Don't Bite the Dog: Autism with a sense of humor

It's REDDDDD!

2012-01-24T15:52:00.000-08:00

So, over the last month or so, Jaymes has developed kind of a weird obsession with traffic lights. He loves toy traffic lights, and nothing pleases him as much as watching the toys go from green to yellow to red. Unfortunately, his love of toy lights does not extend to the real thing.

For example, our day today. I had him this afternoon and evening, as I do every Tuesday. Got him from school and we started driving home. With my usual luck, I hit every single red light the entire way home. Each time we stopped, I'd start hearing little mumbles and moans of displeasure. These gradually escalated to more obvious moans, and finally to ear shattering wailing that should have broken the windshield with its intensity.

"It's reeeeeed."

"It's reeeeed."

"Red! It's RED!"

"It's RED mommy! I need you to go! I need you to go!"

"RED! GO! GO!"

"We do not go on red. We stop on red."

(So obviously he understands that red means stop and green means go. Yellow means go faster. But I digress.)

"Mommy, GO!"

(light changes to green)

"Don't go, mommy! Go mommy! Go left!"

Don't even get me started on how the poor child handles it when the light stays red but the little turn arrow turns green.

He cracks me up with this stuff. It is very obviously super important to him, and he is very serious about it... But I really can't help but laugh a little inside. He's just such a goofy kid.

Jaymes is doing well. He's got ringworm (yuck), but the rings on his neck are gone. He's got a big bald spot on his head, right at the very top, where there was a ring. He's on 6 weeks of medication to kill off the delightful little fungi growing on his skin. Hopefully it kills things off before he gets any balder. Poor boy!

We're still here

2012-01-16T07:19:00.000-08:00

First off, I want to thank you all for the wonderful, kind messages and well wishes- it means a lot to me. I know the blog has not been as active as in the past, but now that my funk is medicated away, it'll be better.

Jaymes is doing wonderfully. He's here part of the week and with his other family ("foster" family, though they re really just like family to Jaymes and the rest of us at this point, very good people) and is so happy. He is now potty trained, only wearing a diaper at night. He has an accident here or there, but that's fine... I am just so happy the idea of using the toilet finally sunk in. I am so ready to never touch another diaper again.

Jaymes is talking, and in greater detail and with more clarity than before. He can understand more difficult concepts, like that when we're sitting in traffic. Being the little backseat driver that he is, Jaymes will bellow "GOOOO" at every green light and stop sign, regardless of whether we can actually go or not. He doesn't much care about the cars in front of us, he knows where we're headed and sitting in traffic is not part of the plan, in his opinion.

Instead of screaming and hitting and yelling, Jaymes is now thrilled to see me and my husband when we come to pick him up. He's polite and well behaved 90% of the time. All aggression has ceased- thank God!!! He's just a sweet, laid back kid. He's been doing so well, in fact, that we plan to wean him down to a lower dose of his Tenex. He's matured and developed a lot more impulse control, and the current dose is just more than needed.

Jaymes cracks me up in sooo many ways. He has this Angry Birds hat that his grandmother gave him, and he won't take it off. It suits him, for sure. We ask him if he is an Angry Bird and he says "Not angry. Happy bird." Hi foster dad and I were talking about teaching him about calling 911 in an emergency, and we both about died laughing when we realized how a 911 call from Jaymes would go.

"Hello, what is your emergency?
"Silver Noctopus"
"What? Excuse me?"
"my silver noctopus!"
"is this a prank?"
"Silver noctopus needs to see the noctopus doctor!"

When the ambulance arrives, of course Jaymes will show them the mangled Silver Noctopus and explain that he requires the services of the Noctopus Doctor. The EMT's will not be amused.

Yeah, maybe we should wait on teaching Jaymes to dial 911.

Here at home, life is returning to normal. I'm out of the whole depressed funk thing, thanks to wonderful doctor, therapist, and medication. School started for me last week, seems like it won't be too terrible this semester. Last semester, I failed all four classes thanks to The Funk. So much for that 4.0. Boo. I'm on academic probation this semester. I made sure to pick all "in person" classes, rather than the online classes I took last semester. It's a lot easier to keep track of things and not procrastinate when there is a teacher in your face saying "this is due NOWWWW". I don't think I will have any trouble getting A's in my classes, they are pretty easy. I took Intro to Spanish, which is easy because of all the Spanish classes I've been through and the fact that I lived in a Spanish speaking country for two years. I accidentally chose the wrong math class, I meant to register for Intermediate Algebra, but I took Introductory instead. Oops. Luckily, the book is the same for both classes and I think a refresher of the easy stuff is a good way to get back into the swing of things. My Music Appreciation class is pretty awful, but it's only once a week, so I will probably survive. The fourth class I chose was a Study Skills class, thinking it would not only be really easy, but also would be useful for me to learn some new ways to study and do my schoolwork. I'm all for new skills.

So, in a nutshell... Jaymes is great. Mommy's Crazy went away. Daddy is much happier. Sierra is getting a bit spoiled. School is good. All is well. I don't feel bad anymore when people find out Jaymes isn't with us all the time. This was the right thing to do, and everyone is getting relief- including Jaymes. Not only that, but Jaymes now has 2 families. Our tiny one, and the enormous family of Mark and Tim. When Jaymes got his tonsils out last week (he never felt any pain, tough kid), Mark had about a dozen people asking how Jaymes was. Jaymes seems very popular among their friends and family. I love that. the more people Jaymes has, the better. The kid is surrounded with love from all sides.

That post about decisions that I've been avoiding posting

2011-12-13T08:05:00.000-08:00

I know it has been awhile, I've had this post written in my head for quite some time, but I've been putting off posting it for two reasons. One, I didn't want to be judged a bad mom or a bad advocate for my son, I didn't want my fellow autism moms to think I'm a failure. Two, I have a lot of friends and family who read this blog from time to time, and until very recently, I was too afraid that some of the more judgmental family members would twist things around and make our situation something it is not.

Like I've said, I've been afraid to post. But it really isn't fair to use this blog to only talk about the good times and the successes. It's not real to leave out the ugly. So I'm going out on a limb and just putting it down for the world to see. I don't care about the judgment anymore, and I can accept that not everyone is going to pat me on the back and tell me I did the right thing. I don't expect that. The decisions we've had to make as a family in the last few months are our own decisions, and for us they are the right ones.

Things with Jaymes had not been going well, as illustrated in my last post here. He was miserable and out of control, and I was exhausted, both mentally and physically. Sierra was unhappy, and Jason and I were fighting non stop. I was very depressed, and I finally hit the limit of what I could handle.

During all the chaos and depression I was going through, Jason and I were trying to decide what to do for Jaymes. He was not happy, and he was getting progressively more difficult to handle. It all kind of hit me in the face one day when I went into his room one morning and found him painting his walls with a cup filled with poop. I don't know why (I've dealt with poop and everything else known to come out of the bodies of small children) but it just clicked in my head and I finally did stop being able to handle it. Jaymes went to the Murdoch Center (I think I posted about that before) for two weeks, during which time I got to work getting myself ok. Unfortunately, things were just as bad when he got home. It wasn't his fault, or ours... It's just the nature of the beast we call autism.

While evaluating our options to help Jaymes and ourselves, our Easter Seals person talked to me about temporary therapeutic foster placement. The word foster is misleading- of course one thinks "foster" and it is assumed that the children were taken away by social services and that the parents gave up custody of the children. That isn't how therapeutic foster works. The child lives with the family (who are trained extensively), but remains in the custody of the parent. The parent makes all decisions, takes the child to appointments, and can visit or even pull the child out of the foster home at any time. I agonized over this. Even knowing all of the above information, the decision was the hardest one I have ever had to make. I thought about it, worried about it, cried about it, and stressed about it for a couple of months.

I got to the lowest point I've ever had in my life, and thankfully I had a wonderful doctor who basically hand-held me through the last few months. He hooked me up with a fantastic therapy program that I went to daily for 6 weeks- and that really helped. The staff there were amazing, and the coping skills taught were priceless.

The doc helped get my meds worked out, and we had a lot of sorting to do. I went on Abilify at first, and it worked wonderfully except that apparently it's got a rare side effect that I was "lucky" enough to deal with- the inability to urinate. I was not pleased when we figure this out, because really, in what world is it fair to have to choose between sanity or being able to pee? I'd really prefer to have both of those things! So, we dumped the Abilify and replaced it with Zyprexa, which works wonderfully. And of course, I can pee. Hooray! you don't realize what a wonderful thing it is until you're not able to anymore.

During the time I was going to the therapy program, I made the decision to do the therapeutic foster care. The application was long and complicated, and it took awhile to get the doctors signatures and everything else we needed done. I'm glad I was still doing the therapy program, because the week or so before and then after Jaymes was placed in the therapeutic foster home was a very hard time for me. I knew it was the best decision for all of us, but that wasn't much consolation. I felt like a terrible mother, a horrible person, and a hypocrite.

Jaymes is with a wonderful couple who love him. He loves them. He's got a big brother who is 11, and they have a little puppy that Jaymes isn't terribly thrilled with. He's got his own room with some fun toys that the family got for him, along with the toys I sent with him. He's doing well at home and at school. He's started using the toilet regularly, and he is writing new words at school.

At first, when I would come to get him to go do something, he would get upset- not wanting to leave Mr. Mark's house. That was hard to see, obviously I wanted him to be eager to come with me. The first few times went that way. But now when I get there to take him out (we do Wednesdays and Sundays right now) he is excited and relatively well behaved. He still has his quirks, and he is definitely still Jaymes- but he isn't aggressive anymore. Thank goodness.

I really believe that this was necessary for our family. When I was at my lowest, I would drive by a telephone pole and picture myself running the car into it. I wasn't in a position to be a mom during that time. Jaymes was unhappy and destructive, and every time he destroyed something, Jason and I would fight about it. Having a break for both ourselves, and Jaymes was necessary. It has given me the time to get my own stuff resolved and to give Jason a break. Sierra gets to live a reasonably normal life for a bit- that has been huge for her. Jaymes gets to be with someone who isn't completely burned out- and he is thriving.

The plan is to have him back home before next school year begins. We're going to slowly add more and more days that I pick him up and take him out to sort of ease everyone back into the swing of things. I'm working with a family therapist to get a plan in place, to change things around so that when Jaymes comes home, things will work out- rather than going right back to where we were.

It has been hell. I've felt that I cannot talk to my friends or family about any of this, because I just didn't have it in me to be judged harshly. It may not seem right to those not living in my home, but this was the right decision to make. It was a hard, heartbreaking decision, but it was not a decision taken lightly or jumped into. He may be in a therapeutic foster situation, but he is not "in" the foster care system. There is no risk of losing custody- I call the shots.

I am posting this because my blog has always been about being real. If I omit every bad thing that we're going through, the blog isn't real anymore. The point of my blogging is to help other parents out, as well as to vent for myself. Maybe one day someone going through the same hell will google "therapeutic foster care" and find this post.

I've learned that it isn't about making decisions that will please others- it's about making the best decisions for the family. If that turns out to bite me in the butt by upsetting family or friends... So be it. I made the right choice and everyone is benefiting from it.

Another article worth a read

2011-11-07T12:11:00.001-08:00

“Are We There Yet?”

Traveling with a Child with Autism

By Pamela Levac

Autism Asperger’s Digest,Nov-Dec 2007 issue (www.autismdigest.com)

Family vacations can be stressful under the best of circumstances. Throw a child or two with autism into the mix, and it can seem overwhelming and perhaps easier to just stay home. But more and more families who have children with autism spectrum disorders are traveling to all kinds of destinations near and far. Though vacationing with a spectrum child requires a good amount of planning, it can be a fun and rewarding experience for the whole family.

Preparation is key when traveling with a child with autism. It is essential to begin planning the vacation long before the actual date of departure. There are many things to consider, from getting the child acclimated to the idea and the destination to choosing appropriate lodging or ensuring your child will have familiar food available.

When making travel and hotel plans, take into account your child's particular sensory issues. Book rooms on the quiet side of the hotel, arrive at less-crowded hours, or bring along a kit filled with ear plugs, familiar toys, video games, snacks, comfortable clothes or whatever else might be needed to ease the transition.

Talk to your child about the upcoming trip and involve him or her in making plans. Have the family explore the destination beforehand: visit internet sites, get library books, travel brochures, and perhaps even request photos of the hotel room you'll be staying in. Some parents create story books that describe the vacation from start to finish, including each day's activities. If you are driving, map out a route for your child to follow, with all the stops (including breaks!) marked along the way. This can ease travel anxieties and make a long trip more palatable to the concrete thinking mind of the spectrum child. Be sure to talk about the vacation frequently to calm worries and rev up excitement, or read your travel story book regularly.

As every parent of a child with ASD knows, routines and predictability are like air and water for a child who doesn’t handle new situations easily. And, travel to unknown destinations can literally starve these kids of the familiarity that is their lifeblood.

Go back to your story book and be sure to emphasize things that will remain the same. We’ll still eat meals together; you’ll have your favorite T-shirt; there will be your beloved cereal for breakfast. If vacation involves a repeat destination year after year, for instance to a family condo, the transition turmoil will get better with time. Peggy, mother of Eric who has autism, says "The first few times you go someplace new, it's hard. He wants to come home so badly. But each year it gets easier."

Danielle, the mother of Pierre and William, both with autism, takes her family on an annual car trip to visit relatives at Christmas time. She offers the following advice: "Keep the events as simple as possible. They like to do the same things every year. Create new traditions."

Airports, planes and trains can be sources of fascination, distress, or both for children with autism. Peggy says, "Eric finds airports and planes to be interesting, but delays, long lines and schedule changes are difficult." Some delays are unavoidable, but traveling off-peak, bringing along books on tape, hand-held video games or puzzles can help. Scan the area for a quiet space to retreat to when you notice signs of overload. If you can talk to airport personnel ahead of time or bring a copy of your child's diagnosis, you may be able to sidestep waiting in long lines. If you must wait, one of you can take the child aside to distract her with stories or a snack.

Choosing to travel as a family alone or with other people is also an important consideration. If you do decide to vacation with others, Peggy recommends traveling with people who "get it." Pair up with friends or relatives who you know can deal with your child's need for space, regularity, simple routines and familiar food. Also make sure you travel with someone who can handle meltdowns without getting upset or offended. Somewhere, sometime, they will occur.

Danielle strongly believes that spectrum children should not be hidden away. "The world is vast and diverse. Because individuals with autism tend to not want to socialize by nature, I believe it is important to impose the reality of having to accept and deal with the fluctuations of daily life." Though it may be challenging at times, it is worth getting out there and seeing the world, both for the child with autism and for everyone he meets.

“Are We There Yet?”

Traveling with a Child with Autism

By Pamela Levac

Autism Asperger’s Digest,Nov-Dec 2007 issue (www.autismdigest.com)

Special Travel Options Arranged Specifically for People

Who Live with Children or Adults with ASD

More and more families are enjoying the comfort and familiarity of travel options arranged specifically for people who live with children or adults with ASD.

One such venue is a cruise run by Autism on the Seas (http://www.alumnicruises.org/Autism/Autism_Home.htm). Director Michael Sobbell decided to offer these cruises as a simple business venture, but he says the overwhelming positive response from parents has been heartwarming.

The cruise ships have an Autism Group Specialist on board and even cater to a child’s special dietary needs. There are opportunities to dine with other families or children with autism. Activities for the whole family, such as bingo, are adapted so everyone can have fun together. Sibling celebrations offer the brothers and sisters of spectrum children a chance to socialize and maybe share some of their highs and lows. There are social gatherings for teens with autism, and even respite time for parents. It’s a supportive environment where families can build new friendships and feel comfortable.

Sometimes it might be necessary to consider traveling without your spectrum child. Peggy has two adopted daughters from China who do not have autism. She would like to travel with them to their birth country unencumbered by the significant adaptations they would need to make for Eric. Peggy fears the long distance, the very unfamiliar sights, sounds and food of China will be too much for Eric to handle. She doesn't want her girls to be stuck in a hotel room watching TV on a once in a lifetime trip. So, even though it is a difficult decision to divide the family, she and her husband will travel to China with their daughters. As for Eric, he’ll spend time with favorite relatives while they are away, and Peggy plans to take him on a special train trip to Vancouver when they return from China.

Finally, if at all possible, don't skimp on those fundamental things that will make or break your vacation. It's worth paying a few extra dollars for a seat in first class or a nicer hotel room with free movies, if this will make your child’s (and therefore your family’s) trip easier and more enjoyable. Anticipating vacations is often half the fun. With spectrum children, a month or two (or three) of anticipation, careful planning and preparation can make all the difference. Bon voyage!

SIDEBAR (good to be boxed or color highlighted)

Travel Tips

create a story book about your trip to read to your child beforehand
choose an appropriate destination (quiet, somewhat familiar)
call ahead to ask about special services, meals and accommodations
consider a vacation rental instead of a hotel, so you can prepare your own meals
if you are driving, map out stops ahead of time, and prepare for delays
carry with you a “sensory pack” containing plenty of familiar food, toys and other essentials
brainstorm possible problems and create a contingency plan
talk to other families who have traveled for real-world ideas and advice
plan structured activities for every day; don’t abandon using visual schedules just because it’s vacation!
make sure to include some activities for everyone, including parents and other siblings
travel at quieter times of the year
bring a copy of your child's diagnosis to show personnel if necessary
be flexible, and try to keep your sense of humor

Helpful Resources

Making Peace with Autism: One family's story of struggle, discovery and unexpected gifts by Susan Senator. Trumpeter Books, December 2006.

"How to Plan a Vacation with Your Autistic Loved One" by About.com’s autism guide, Lisa Jo Rudy. http://autism.about.com/od/copingwithautism/ht/vacationstep.htm

UK Guardian’s website has a helpful travel section: http://travel.guardian.co.uk/article/2005/jan/08/userstraveladvice1

BIO

Pamela Levac lives in Canada where she writes, paints and mothers her children. She is fascinated by the workings of the brain and has a keen interest in Autism Spectrum Disorders. She welcomes email at pamela-246@hotmail.com.

Forward

Quick update and I'm an idiot

2011-11-04T09:31:00.000-07:00

This is a very brief update, hopefully my sanity will allow for more posting soon but not right now.

Jaymes is at a 30 day respite home, to give both him and us a much needed break. He is thrilled, and just loves the people and the home, so I'm happy about that. We're working on our own issues, and letting ourselves have some down time that is spent with Sierra, letting her be a normal kid for once.

I'm an idiot and lost track of my payments on my website domain name, and would you believe that if you let a domain name expire, it costs $160 to get it back? Obviously this was not an option, so the new url is www.cantbitethedog.com. Same site, different address. Sorry about the idiocy, I have no idea how that happened. So much for assuming recurring payments actually kept..um.. recurring. Silly me.

I think I lost that sense of humor.

2011-09-12T11:51:00.001-07:00

As evidenced by a major lack of posting lately, things have not been going so well with Jaymes. When Jaymes isn't happy, no one is happy and when Jaymes stops sleeping, so do the rest of us.

Jaymes doesn't sleep anymore. He talks all night long, and slams his bedroom door all night long. Then when he gets bored, he goes back to destroying his room. His mattress was toast a looong time ago, but now he got the big bolts out of his bed and broke that, and he's broken most of the ceiling fan blades. We removed what was left as a safety thing so that he doesn't hang and have the whole thing come crashing down on him. No clue how he gets that high, nothing in his room is tall enough for him to stand on top and reach.

He's learned how to rip holes in the walls, and seems to greatly enjoy doing so. His carpet is only still there because he chooses for it to be- the tacks are all gone and so is the pad underneath. Every morning I fill up a trash bag worth of ripped, shredded carpet padding.

I had the idea to screw down the air vent covers in the floor, to keep Jaymes from throwing toys down and breaking the AC ducts... Bad idea, I guess. I used a drill and 2 inch long metal screws. He's gotten most up by hand, several of which ended up screwed INTO the electrical outlet. Jason got shocked trying to get the stupid screws out.

I don't know how he survives this stuff. He's the type of kid who would lick the screw after screwing it into the outlet. In all honesty, he should have been dead on his floor that morning. He has someone seriously looking out for him. I'm thinking a very large flock of angels. The kid almost kills himself daily, I don't get it. He's so creative about it too. The newest thing he will tell you is "we do not ever put diaper in the toaster." Because he did. And it melted. And burst into stinky flames. We got a new toaster, and it is hidden when not in use.

The cherry on top of this sundae of destruction came a couple weeks ago. Jaymes decided to take his beloved "friend" Blue Cup (yes, it's a blue plastic coffee cup) and fill it with poop. He then proceeded to walk around the room painting the walls, his toys, and his bedding. I threw Blue Cup away. Even I have limits on what I will and will not wash poop out of. I hope it taught him something.

School isn't going well, Jaymes is too hyped up and impulsive to accomplish much of anything. At least we got the teacher we love- that's a plus.

Psych saw him last week and we're trying Trazodone every night to make him sleep. So far, he's still mostly up but there have been some moments of silence so maybe... We upped his Risperdal, and left the rest alone. He's too small to keep increasing.

I've hit my limit. I hit it when I saw the screw in the outlet and when I saw a cup full of poop and a mural I had to scrape off the walls. I hit it when he called me a bitch (oh, whoever he got that from, may you rot in hell), and when he tried like crazy to attack me when trying to put him into his room for a time out for kicking his sister.

I am tired of being bitten, kicked, hit, spit and pooped on. I am tired of hearing "shut your mouth mommy" and "you close your mouth. No talking to Jaymes." I'm tired of the fear of all the new ways he could come up with to kill himself, and I'm tired of looking at that nightmare room that only last year was beautifully repainted. Why did I bother? Why on earth did I think that that would last any amount of time?

I've been asking various agencies for help for a month. Easter Seals, our case manager, Centerpoint, Triad First in Families... Centerpoint authorized 5 days of respite, but there wee no staff to do it. The Children's Home weekend respite was full. The best we could do was several different Easter Seals workers coming during the weekend to help. Better then nothing, but I needed (and still do) Jaymes out of the house. The first two weeks I cried non stop. Jason and I discussed putting him into therapeutic foster care or an institutional setting. I cried some more.

I thought we could beat this autism, like we could help Jaymes improve and eventually know that he'll be a happy and safe part of the community. This is not going to happen. For every skill he learns, he learns a new vice. For every good word he learns, he learns another ugly one. I don't want a 15 year old in diapers, beating the crap out of me. I really, really don't. If Jaymes were bigger, I and Sierra would have been seriously injured by now. I shudder thinking about the future.

I love my son, and I'm not giving up on him... But I need a break, and i need for autism to not be part of that break. We have three days approved, he goes to the foster home tonight until Thursday afternoon. Better than nothing. Trying to get him into the Murdoch Center TRACK program, a 45 day program that is essentially emergency respite. They do med management, and school and all that good stuff. 45 days would be a break. Three is barely a nap- but I'm not complaining, it's better than nothing.

I'm sick, have some kind of cold that settled in my chest. I've been battling weird reactions to antibiotics, ended up with a bunch of stitches after a fencing mishap... Oh, and my school semester just started. Overwhelmed? You have NO IDEA.

So if it seems like I'm hiding in a little hole, I am. I'm hiding from life, from family, from blogging, from friends. It's pathetic, but that's where I am at.

I went with a friend to church the other day. I am as far from religious as you can get, but it was nice. The music was good and a lot of what was said during the service felt like it was written right for me. Maybe doing the church thing will be useful- if not for religious reasons, for social reasons.

Anyway, that's where we are, and why there have been no blog posts, no book reviews, and no product reviews. They're coming, once I get out of this funk.

Time to do some cooking with our kids!

2011-08-01T06:41:00.000-07:00

This article has me feeling ambitious, so Jaymes and I are going to cook today. I have not decided what we'll cook, but I think it will involved peanut butter. Wish us luck, safety, and a controlled level of mess!

GFCF Cooking Together: Learning Can be Fun!

AADigest Exclusive

Reprinted with permission from a 2011 column on “GFCF Cooking Together with Kids” offered by the Autism Asperger’s Digest magazine. This selection is featured in the July/August 2011 issue. Find previous GFCF Cooking Together articles at the Article Library page of the AADigest website, www.AutismDigest.com.

The kitchen is a natural learning environment. From organizing ingredients, to creating lists, and teaching basic math concepts, it’s not hard to imagine turning time spent cooking together into an incredibly fun learning experience.

Lay the Foundation

While any time spent cooking together can become a learning opportunity, do not introduce your child to cooking for the sole purpose of teaching. The key word is “fun!” Your child needs to be comfortable being together in the kitchen with you first, so if you haven’t begun the process, take steps to gradually introduce him to food, cooking, and sharing time in the kitchen. (Check out our earlier GFCF Cooking Together articles for some great tips!)

Don’t Forget the Food

It sounds silly to say “don’t forget the food,” but the point is simply this: There is no greater motivation to learn in the kitchen than for the end product to be the reward. This means making sure you choose foods your child loves to eat.

Basic Skills

One of the best things about using cooking to teach skills to our children with autism, is that it’s so easy to tailor the information and level of difficulty to meet their needs.

· Organization and Sequencing. Write each step of the recipe on a separate card, or list them on a dry erase board in simple terms so you and your child have a visual sequence of steps to follow. Make a list of ingredients and utensils you will need, then collect them and organize everything on the counter in the order in which it will be used. The extent of your child’s participation depends entirely on her ability and comfort level in the kitchen. If necessary, begin by asking her to find just one utensil and make it her “assigned” utensil. For example, her utensil could be a spoon and when that step is reached in the recipe, she has responsibility for stirring. Put a star next to the steps that she will complete.

· Sharing Together. This is a great time to implement strategies like turn taking and synchronizing actions together. Examples might be: “I’ll pour this, then you’ll pour that,” “I’ll get the mixing bowl, you get the spoon,” or “I’ll add eggs while you stir.”

· Verbal Communication. Keep a happy, chatty conversation going, even if you’re delivering a monologue. Remember that the idea is for you to model the steps and teach while you’re in the cooking process, whether your child is watching or actively participating. Every now and then ask a simple question and give him sufficient time to respond.

· Descriptive Language. While you’re talking, use as much descriptive language as possible to define colors, textures, tastes, and smell. Pause to let her experience and absorb the similarities and differences in ingredients.

Math in the Kitchen

Could there be a better place to teach essential math than the kitchen? This is the perfect opportunity to give real-world substance to abstract concepts. Depending on your child’s academic level, you can work fractions, measurements, addition, subtraction, multiplication, division, and even weight (if you have a kitchen scale) into any simple recipe.

· Counting. Count the number of times you stir, every time you add an ingredient, the number of steps in the recipe, the number of ingredients, etc. Make it a game by taking turns counting or by pretending you can’t remember the next number so your child can pitch in and help.

· Double the Recipe. Create the opportunity to teach addition or multiplication by doubling the recipe. Your child can count out loud, and physically measure and pour each ingredient twice, which gives you multiples chances to reinforce the concept. Make it more complicated by increasing the recipe by 1 1/2.

· Reduce the Recipe. On the flip side, teach subtraction or division by cutting the recipe in half.

· Fractions. Measure one cup of flour (or other ingredient), then measure again using half cup, third cup, and quarter cup measures. Talk about how they’re different. Demonstrate that you can pour two half-cup measures into one cup to equal the same amount. Another great visual method is to choose a food item that your child likes, whether several carrots or slices of bread, then lay one item out whole, cut another one in half and place it under the whole one, cut another one in thirds and place it directly underneath, etc.

TIP: You’ll need more than one set of measuring cups to show the relationships. You’ll need two half cups, three third cups, and four quarter cups.

Shapes, Sorting and Fine Motor Skills

Scholastic.com had a great lesson plan for teaching shapes and sorting. Complete directions can be found by going to their web site and searching for “fruit-shape kebabs,” but here’s the idea:

· Cut different fruits into shapes. Use any type of fresh or canned fruit and cut each one into a variety of shapes. For optimum sorting, you’ll need enough of the fruit to cut each one into the same shapes. Ultimately, the fruit will be made into kebabs, so plan to have enough pieces cut to make several kebabs.

· Sort by type of fruit. Talk about their different colors, textures, tastes and uses in cooking.

· Sort by shape. This gives you the opportunity to teach different shapes. You can also compare the cut shapes to the original shape of the fruit.

· Separate the fruit into piles. Decide how many kebabs you’re making and create a pile of fruit for each one. Count as you divide the fruit into separate piles.

· Slide each pile of fruit onto a bamboo skewer to make kebabs. Be careful about safety issues if the skewers have sharp points, but if it’s appropriate for your child, placing fruit on the skewer helps fine motor skills.

· Enjoy the snack! Serve with a GFCF yogurt for dipping, sprinkled with some raw sugar on top. De-licious!

Spending time in the kitchen together offers all sorts of opportunities for learning, from academics like math, history (origins of food), or geography (when using ethnic foods), to working on sensory issues or social skills. The key here – and everywhere – is to make learning fun for the child!

Read More Online! Our companion e-article (available only to subscribers during July & August) focuses on converting recipes to GFCF. Plus, look for a delicious, nutritious warm-weather recipe to try out with your child. www.AutismDigest.com

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Summertime Crazies and Camp Royall Photos

2011-07-26T08:18:00.000-07:00

I’ve been spending a lot of time outside, attempting to tire my children out in time for the nap that I would love to one day get to take around 2-3pm on a hot summer day. Unfortunately, my success has been limited- to tiring myself out and energizing the little ones even further!

I’ve gotten Sierra into feeding Rocket, so she goes out every morning and gets hay for him, then goes off to do her own thing. Jaymes has discovered the joy of picking veggies out of the garden- unfortunately, his discovery has not gone as far as understanding that it is preferable to just pull a pepper off the plant rather than picking the entire plant out of the ground, dunking it in water, and cramming it into a plastic bucket filled with muddy slime. I have to give the boy credit though, technically he DID plant it…

Jaymes is missing summer camp still. I feel so bad for him, I imagine it has to be very hard to spend a week at the coolest camp in NC, where he’s a VIP with adoring fans then get stuck coming back home to our less than thrilling life.

It was so funny, when we dropped him off, I was all sad and wanting to linger with him. He turned, looked at me, and said “byeeee!” and tried to shove me out the door. I took the hint. He had zero homesickness during his time at camp- in fact he repeatedly told his counselor that he was staying and mommy needed to stay home. I’m not offended; I wouldn’t want to go home either!

He really had the time of his life at camp. It was totally worth the money and the long drive. He had his own counselor, his own room, and all the fun activities you can think of. Kiddo got to swim THREE times a day, go on the zip line, make s’mores, play in the sand, dress up in funky wigs… He got to go boating, fishing, and they even have the most incredibly cool sensory room with the whole bubble column and fiber optic dangly light deals. VERY nice.

He did art work, which he covered the door of his room with. When we were leaving with his bags packed, I asked him if he wanted to take them and he was very adamant that they stay on the door for future campers to enjoy. Silly boy.

His counselor did detailed (and I mean DETAILED) notes twice a day (I think), and she was really funny. I had a great time reading those notes. There were several “laugh out loud” moments for sure.

Picking him up was not exactly the joyous reunion I’d been hoping for. This was the longest I have ever been away from my little man, and by the time we arrived to get him, I was really eager to snuggle him. He is, after all, my baby. Kids trickled in, most of them running towards their parents, where hugs and kisses were exchanged. One little blonde boy saw his mom, and bolted the opposite direction. In hindsight, this was an omen. Jaymes came in toward the end of the stream of children. The minute he set eyes on me, he started screaming. “Mommy go home! Jaymes stay at camp!” It broke my heart, because I knew ahead of time he would have a hard time coming back home. I felt so bad for being the one to drag him back to boring old life, after s much fun at camp.

He pretty much screamed and squirmed and fussed through the whole talent show portion of things, although he did stop long enough to do his talent, which was making a picture with glue and glitter. It was cute, at least right up until the point it was time for him to be done, and they dragged the little table back. Jaymes took off after the table, grabbed his wet picture and ran back to me. He was upset still about knowing he had to leave, and when he is upset he likes to take things he’s made (usually drawings that he cares about) and shred or otherwise mutilate them, then cry about it like I did it. In this case, he took one hand and smeared the wet glittery glue across the page, then grabbed my arm (which was still looking pretty nasty due to a really gross bacterial infection that I don’t even know how I got) and rubbed glitter into the oozing blisters on my arm. That one did not feel so good, but my blistery, nasty arm looked rather festive. Within about two seconds, I was head to toe glitter, but again, festive. So it was all good.

It took Jaymes a couple days to calm down and accept that he was home. Once he was ok with that, I started noticing how pleasant he was being, and how nicely he was talking. He told me all about camp, and asked when he could go back. I promised him I’d do as much as possible to get him in next year- I sure hope I can make good on that.

Camp Royall is amazing. I have never met a group of people as tolerant, accepting, kind, generous, and enthusiastic as these folks. The camp is beautiful; the facilities are super fun, clean and safe, and if you were to wander upon it, you would not know it was an autism-specific camp. I am so glad that Jaymes got to have this wonderful experience, for the first time in his life he went somewhere that he was just a normal kid, doing normal summer camp things. That is priceless.

I missed him the entire week, the house just felt so empty without Jaymes. I did enjoy sleeping in every day though, rather than being jolted awake by the sound of Jaymes pounding, kicking, and slamming his bedroom door! Jason really needed the break, he finally got to relax and stop freaking out over every little thing.

Sierra had the time of her life. The whole week was all about Sierra. We took her to her very first movie; she chose Green Lantern and really enjoyed it. We bought a big bag of popcorn, and Sierra made it hers. During most of the movie she had the top half of her body buried in the bag until she munched herself into a food coma and passed out on my lap. She was perfect- quiet, still, enjoyed the movie. We made trips to places she loves, like the mall and the make-your-own-sundae frozen yogurt place. We played outside, and went to the playground. She really, really had a fun week. Sometimes we have to get a break from autism- sometimes we all just need to be people, and Sierra is no exception. She really needed her special “vacation” week.

NC folks, if ever you’re looking for a great camp for your kids on the spectrum, Camp Royall is the place to go.

Here, have another great article!

2011-07-10T18:36:00.001-07:00

Sensory Savvy Parenting!
By Britt Collins, M.S., OTR/L

Reprinted with permission from a featured article that appears in the just-released July/August issue of Autism Asperger’s Digest magazine. Learn more, www.AutismDigest.com.

Your first child. What an exciting, wonderful, and anxious time it is! When you found out you were pregnant, you probably read stacks of baby books, and read even more as your baby grew into a toddler. When you discovered your child was on the autism spectrum, you undoubtedly searched out any and every book you could find that would help you understand your child better.

Along the way you may – or may not – have read about sensory processing disorder (SPD) or sensory processing problems in spectrum kids. Recent studies report that approximately 5-10% of all children experience sensory symptoms significant enough to affect their everyday life functions. Within the ASD population that number can be as high as 95%! (Tomchek, 2007) Sensory issues may have resonated with you to some degree; you grasped what sensory sensitivities might feel like to your child. But, noticing them – before your child is in sensory overload – well, perhaps you’re a little lost there. No worries! I’m here to help you become a more sensory savvy parent!Jackie Olson (a mom) and I co-wrote Sensory Parenting: From Newborns to Toddlers(Sensory World, 2010)to reach out to new and pregnant moms with information about our sensory systems and how they work. For many new parents, this is foreign territory!

So, let’s assume you know the basics: there’s not five senses (touch, taste, hearing, smell, sight) but seven (add in vestibular and proprioception) and some experts say there are lots more! Our kids can be hypo (under) sensitive or hyper (over) sensitive in any area. And, that sensitivity level can vary sense to sense and day to day, or even hour to hour depending on the conditions at hand! You understand this is biology at work within your child: it’s not something he can control at will. And, that sensory issues cause very real problems in your child’s life that interfere tremendously with her ability to be calm, focused, attentive, and happy.

But - how do you know when your child is in sensory overload? Are there early warning signs, behaviors to look for that tell you something is amiss? Yes there are, and as a parent you have to play detective to figure out your child’s specific sensory sensitivities and recognize the red flags. Your goal is to help your child avoid sensory overload (it’s no fun!) or offer strategies to calm down afterwards.

I believe almost everyone has some sort of sensory issue. Maybe you buy tag-less t-shirts because the tag drives you crazy, or you prefer a certain type of comfortable clothing (I prefer anything cozy, like a large sweatshirt and warm socks). It’s really irritating when strangers keep bumping into you in a crowded subway, and you never go to loud concerts because they hurt your ears. Rides at Disneyland that go up and down or round and round? Forget it; you’d be nauseous in under a minute! All that is sensory based.

And so is the flip side. You love deep pressure massage; it’s so calming to your system. You go to the gym to release the frustrations of the day. You relax in a warm bath, scented with your favorite aromatherapy products – ah, how good they make you feel! And there’s nothing better than the smooth, creamy texture of good ice cream. That’s all sensory-based, too!

I’ve met scores of parents who start to realize their own sensory issues when they begin to educate themselves about their children’s sensory challenges. When they feel, first hand, what it’s like, they start better understanding what their child may be experiencing on a daily basis when the world is too loud, too bright, too fast – too intense!

Everyday sensory sensitivities become a problem when we are so affected by them we can no longer function as we should. This is what happens with our kids, and they express this through their behavior – the only way they know how to tell us! And yet, many parents attribute behavior problems to “something else” and don’t realize how much of an impact sensory issues have. They put their children in uncomfortable situations every day: the grocery store, the mall, the playground, loud birthday parties, restaurants, and the like – and they expect the kids to “behave.” More often than not these situations are way too overwhelming and a meltdown or shut down results.

As a sensory savvy parent you learn to look for the signs of sensory overload. Every child is different and you’ll need to learn to read your own child’s warning signs. That said,let me give you some things to look for. If your child covers her ears, she is more than likely trying to shut out disturbing auditory sounds. If he blinks a lot, avertshis eyes, or his eyes water frequently, he could be bothered by too-bright lights (to him!) or the sun. If she pushes away certain foods, and you notice a pattern (they’re all soft or all crunchy) it’s probably a tactile issue. As sensory overload approaches, kids can have different reactions. She may begin to get quiet or disengage if before she was talking to you. You may notice he’s starting to verbally stim or fidget or whine, or grind his teeth. All of these things can be signs of sensory stress. Other signs you might notice:
• singing or talking really loudly to drown out other uncomfortable sounds
• crying or screaming because something touching her doesn’t feel right or hurts
• pulling away from you because he’s scared or anxious to go where you want him to. He may remember last time, when someone dropped a jar of pickles on the floor and the smell was so bad.

You may be wondering: is it all sensory related or is some of it just plain “behavior?” Good question! The difference between sensory and behavior is an article in itself, but you can look for cues from your child and the environment to know what’s what. Is he throwing a tantrum because you told him he cannot have ice cream for breakfast? That’s behavior. Or is it because you washed his favorite shirt with a new detergent and now it smells terrible? That’s sensory. Is she shutting down because you’re asking her to write her spelling words (behavior)? Or is it because you’re frying fish for dinner in the kitchen, the smell makes her gag, and she can’t focus on the task (sensory)? If it’s sensory, remember your child can’t control this – so you need to be proactive, stop and think about what’s going on and what might be causing the behavior. If it’s a sensory issue, it’s your job to step in and help your child. That means you change your behavior and adapt the environment to alleviate your child’s sensory issue at hand and help her regain sensory equilibrium.

Sometimes sensory issues are obvious; at other times they’re not. I work with a child who has impaired hearing. When an adult puts his hearing aid in, he gets upset and grinds his teeth. He is not used to hearing so many sounds and all of a sudden the world is probably like a rock concert to him. I work with another child who begins to physically shake when a peer approaches her to talk. She walks up on her toes and begins to grimace. She will eventually engage and we encourage her to interact, but do so with plenty of breaks so it doesn’t becometoo overwhelming. One parent I know couldn’t figure out why her son wouldn’t stay in his bed at night. She eventually discovered their cat had deposited a “gift” right under the middle of his bed while they were away on vacation. Her son’s sensitive smell detected the lingering odor when she could not.

Being a sensory savvy parent is one part curiosity, one part sleuth skills, and one part perspective. Be open to seeing the world through your child’s senses and at first, adapting the environment to make it more conducive to your child’s needs. Over time, and with the help of a good OT, you can set up a sensory plan that will help your child learn to self-regulate and deal with the sensory issues. And finally, forgive yourself for those moments we all experience. Here’s a common one: you’re getting three kids ready for school in the morning and you’re running late for work. Your child with ASD/SPD begins to melt down because in the rush you put on the socks that have little tiny strings inside that drive him crazy. Now one childis screaming, another is telling you she forgot to do her homework the night before and the teacher will be mad, and the third child is telling you to pick him up from soccer practice after school! You notice your own meltdown meter skyrocketing! It’s okay, you are not alone – it happens to all of us. Stop, take a deep breath, and play detective to find out why your spectrum child is upset. Retrace your steps and once you figure out it’s the socks, go find the seamless ones, switch them out, and then everyone can calm down. Just toss one of those little chocolate Dove bars into your purse for the ride to work… you know, the kind that make you sigh with a sense of pleasure? Now you understand what it means to be a sensory savvy parent!

BIO
Britt Collins is a pediatric occupational therapist who lives in Salem, Oregon. She has an award-winning OT DVD series (otdvds.com) and a newly released book, Sensory Parenting.For more information visit sensoryparenting.com.

Recommended Reading
Growing an In-Sync Child: Simple, Fun Activities to Help Every Child Develop,Learn, and Grow. Carol Kranowitz, MA, and Joye Newman, MA

Parenting a Child with Sensory Processing Disorder: A Family Guide toUnderstanding & Supporting Your Sensory-Sensitive Child.Christopher R. Auer, MA, with Susan Blumberg, PhD

Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Childwith Sensory Integration Issues. Lindsey Biel, OTR/L and Nancy Peske

Sensational Kids: Hope and Help for Children with Sensory Processing Disorder. Lucy Jane Miller, PhD, OTR/L and Doris Fuller

Too Loud, Too Bright, Too Fast, Too Tight: What to do if You are Sensory Defensive in an Overstimulating World. Sharon Heller

Copyright © 2011 Autism Asperger’s Digest. All Rights Reserved.

Book review: Starting Sensory Therapy, by Bonnie Arnwine

2011-07-05T09:57:00.000-07:00

Today I’ve got another book review! This one is a MUST HAVE for everyone who is in some way affected by autism. There are all kinds of books out there that give us ideas on ways to play with our kids, but many of those advocate very expensive toys and therapies. For the first time, I’ve found a book that makes home-based sensory activities easy , affordable, and most of all- FUN.

Starting Sensory Therapy is a fantastic resource. The chapters are organized in a way that makes it super easy to flip right to the activities you need, rather than searching through the book. The book is divided into eight chapters, beginning with a very informational chapter that discusses different types of sensory processing disorders, evaluation and diagnosis, therapeutic options, and even goes into getting services through either insurance or through an IEP with the public school system.

The main chapters in this particular book are all based around the different areas that sensory therapy works on. Included are tactile, gross-motor, visual, auditory, olfactory, oral-motor, and fine motor activities. Each chapter contains many different activities (rather than just a couple), and even include ways to modify each activity to fit kids who do not yet have the skills required to complete the activity as it is written. That activities can be modified, and that the book explains HOW is really wonderful- it’s something I have very rarely seen in these types of books. My frustration a lot of the time is in finding all these great activities that my son can’t do yet. In the past I’ve tried myself to modify the activity and it’s do-able, but I cannot describe my excitement to see that this author already did this for me! The activities are easy to modify to make them easier, or to make them more difficult. There are wonderful suggestions on how to further extend each activity by adding it to a task or skill being worked on.

The coolest activity in the book is one that would never have occurred to me to try- a scent necklace. My son loves to sniff things, and we made him one of these simple, cheap necklaces. He LOVES it. It cost almost nothing to make, was a whole lot of fun, and it makes our lives easier. He wears it to the store, and we are spared spending half an hour letting him sniff candles to avoid a meltdown.

Some other pretty nifty activities include “shaving cream fun” with colored shaving cream and toy dinosaurs, “hair gel bags” made with glitter or sequins inside, “blubber” recipe to make cool rubbery play-dough, and “sticky bracelets” made with interesting objects found outdoors. The book even offers a variety of food related activities, from making simple peanut butter cookies to creating “banana bugs”- and these are things Jaymes just adores doing. He is, after all, an aspiring chef!

This is a book every teacher, therapist, mom, grandma, or friend of someone with on the spectrum or SPD should own. It is without a doubt the jewel of my collection and it is dog-eared, marked up, and has some shaving cream glued to it after referring to it so many times to keep Jaymes entertained and learning!

You can get your own copy of the book here- check it out!

Guest post- and definitely a worthy cause!

2011-07-04T15:37:00.000-07:00

I was contacted by a teacher trying to get her students a real playground. Just watching my own child play on a playground, and seeing the opportunities that play equipment provides for kids like Jaymes to connect socially with their peers is a powerful thing. Our school is incredibly blessed to have several playgrounds and fantastic outdoor play areas- every school deserves to be able to say the same. Please give these great folks your votes in their contest, I know I will be

* Vote once a day, every day, here: http://www.refresheverything.com/muirautismplayproject or via text message 107391 to Pepsi (73774).
.

Muir Autism Play Project from Oona Hanawalt on Vimeo.

At John Muir Elementary School, which serves some of San Francisco's most needy children, students from the general education and autism-specific class currently play on a bare patch of asphalt surrounded by chain-link fence and peeling paint. We desperately need a play inclusive play space. Our proposal has been accepted for the Pepsi Refresh Project, and is posted for public voting between July 1-31. You can vote once a day, every day. If we're in the top 15 vote recipients, the students in this classroom will get an inclusive playground!

* Vote once a day, every day, here: http://www.refresheverything.com/muirautismplayproject or via text message 107391 to Pepsi (73774).

Imagine this: Jack, a sweet, chubby-cheeked pre-schooler in the autism-specific classroom, desperately wants to play with Simon, a general education peer. Simon asks, “Jack, do you want to play with me?” Jack is unable to respond and echoes back, “Jack, do you want to play with me?” His puzzled classmate walks away. As you can see, Jack’s autism hampers his social skills and he is unable to engage in the unstructured play that takes place on the empty playground.

Every day, he walks the perimeter of the playground for the entirety of recess, flapping his hands in front of his eyes while his general education peers run and play meaningfully with each other. Jack’s language and play deficits increase his isolation, exacerbating his environment of deprivation, and shutting out the myriad learning opportunities that his general education peers access. Jack needs a structured play environment.

After engaging in this solitary behavior day in and day out, Jack has lost the equivalent of 7.5 (180 hours) days of social interaction by the end of the school year. This social interaction is invaluable to Jack’s development. Research shows that children engage in play activities to practice valuable life skills such as conflict resolution, negotiation, and taking the perspective of others. For Jack, even the paucity of opportunity to use language is devastating. As Jack continues to pace the playground perimeter, hand-flapping in his own world, the window for neurological development is rapidly shutting, and those lost 7.5 days will never be regained. Without opportunities for engaged play, Jack will lose even more precious time.

A play space is something most schools, parents, and students take for granted, but Jack and his classmates don’t have one. An inclusive play space will drastically change the outcome for students like Jack. It gives them a place to play with their typically-developing peers, practicing social skills and gross motor skills. A play space at John Muir Elementary School would even the playing field for the students, and give them opportunities to engage in joyous play-something every child deserves!

You can follow our quest and read more at our website: www.muirautismplayproject.com. Thank you so much for your support!

Here's one for Fathers Day

2011-06-18T20:46:00.001-07:00

Enjoy!

A Father's Moment
By Patrick Paulitz

Reprinted with permission from a featured article that appeared in the September/October 2005 issue of Autism Asperger’s Digest magazine. Learn more, www.AutismDigest.com.

All of us make daily choices in life. Most of these choices are trivial, like what to have for dinner or what color socks to wear. Other choices are more life-changing, like whom to marry, where to live, or what house to buy. Sometimes, choices are made which at the time seem to be in error, but allow us, if our ears, eyes, and mind are open, to learn about life, our children, ourselves. Sometimes a wrong turn can lead to nothing less than a miracle.

It was a spring Saturday in the Bay Area. There was nothing exceptional about the day, except that it wasn't raining. Not bad for a weekend in the wettest year California had experienced in decades. The sky was blue with white puffy clouds, and it was on the cool side - a great day for a picnic.

April and I decided to spend the day in Sausalito, a trendy upscale town on the waterfront just north of the Golden Gate Bridge. We packed a lunch and ate hot dogs, chips, and sodas with a spectacular view of the San Francisco skyline. The pigeons and sea gulls, we discovered, are only your friends when you're eating. They're not one of God's more loyal creatures, to say the least. Later that afternoon we blew bubbles with Shamus, our four- year-old autistic son, in a local park before starting the drive back to our home on the Peninsula.

On the way home I took a minor detour; I wanted to show April some nice places to have a picnic another time, with a great view of the San Francisco Bay. As luck would have it, despite our best efforts to follow the signs to the freeway we somehow took a wrong turn. Or was it a wrong turn?

We soon found ourselves among green rolling hills that we could see eventually led to the Pacific Ocean. We were debating whether to turn around, or just keep going and enjoy the ride. It was so beautiful, we decided to venture on. By the time we arrived at the ocean, April had no interest in making the short trek to the water. I parked the van and walked to the beach by myself, staying only a few minutes. It was no fun being there without my wife and son. That's just not the way God intended it.

Before maneuvering home, we knew Shamus needed a potty stop. Even though the restroom building was not more than a few hundred feet across the parking lot, we figured the less walking our boy did here, the better. Parked cars are a real distraction for Shamus. Once “business” was done, I turned to Shamus and said, "Shamus, do you want to go to the beach?" He was never a beach-lover before, but I thought I’d give him the option. Surprisingly, he said "yes." Kids, even autistic ones, do change sometimes, I guess…

We watched the waves tumble in, leaving the hissing, white-green foam behind. Shamus seemed to be enjoying it so much - the sound of the ocean, the frothy surf, the big sky overhead.

Now, Shamus is a native Californian and our home is only 10 miles from the ocean. He had been to the beach many times before and had never been too interested in exploring beyond the blanket he was sitting on. But today was different; he wanted to get his feet wet.

San Francisco is not a “beach” town, despite its physical proximity to the ocean. The water is cold, and summer weather along the coast is usually cold and foggy the entire day. Bay Area residents, especially coastal residents, don't wear shorts and don't keep beach towels in their car. Extra blankets and jackets are a far more practical item to have on hand.

But here was my son wanting – for the first time - to get his feet wet. So, we rolled up his pants, took off his socks and shoes, and I did the same. Shamus got his feet wet. He was ecstatic. As for me, the water felt like ice, my feet were frozen, my rolled-up pant legs soon unraveled, and in no time, both our pants were soaked - and we had no dry clothes. And yet, I wouldn't have traded that moment for anything in the world. It was our moment - father and son - playing in the surf. Nothing else in the world mattered to either of us. For most four-year-olds, such a moment would be routine. With our dear Shamus, however, I take nothing for granted.

April is such a “Mom.” Even today my own mother, who is 82 years old, often tells me to put on a sweater when she is cold. A mother's nurturing nature transcends generations and crosses cultural lines. As April motioned for us to come out of the water, even trying to bribe Shamus with a bag of potato chips, I shook my head. I laughed and laughed and shook my head. “No way,” I was thinking to myself. This is our special moment in time. I knew what she was thinking. We were cold and wet - more specifically, Shamus was cold and wet. Dad can take care of himself. And I knew that I would allow nothing - not even a loving Mom waving a bag of potato chips - to spoil this moment. Potato chips and a warm minivan could wait.

After we came out of the water, April drove home as I sat in the passenger seat, stripped down to my T-shirt and underwear. Shamus wore only a shirt and a towel – and a big smile on his face. As we drove south across the Golden Gate Bridge, I thought about what a miracle God had given me that day - and all because of a wrong turn.

BIO

Patrick Paulitz, a freelance writer, lives with his wife April and son Shamus in San Mateo, California.

Last day of school is tomorrow... Wow.

2011-06-13T15:50:00.001-07:00

I have been in my happy little hermit-hole here at the house. When I get stressed out, as illustrated by the last not-so-enthusiastic blog post, I tend to avoid everyone and just do my own thing. Not sure why I’m that way. I guess I am not really much of a people person to begin with, and when I’m feeling sad or stressed I hate trying to be fun and interesting and happy around other people. I’ve barely talked to any friends, and not much better as far as family goes.

I have been busy with all those summer things I seem to start as a hobby, but which turn into a LOT of work. The garden is going great, the plants are enormous and everything is starting to grow wonderfully. I planted 15 or so tomato plants, everything from yellow cherry tomatoes to grape tomatoes, to Roma tomatoes, the beefmaster tomatoes… And so on and so forth. I love tomatoes, could eat them every day. Not a great thing for someone with pretty bad GERD to be addicted to, but it’s totally worth the pain! I put in four broccoli plants, but I have never grown the stuff before so I am not all that sure anything will come of those. I don’t really know when or how to harvest. I did a ton of cucumbers, and they have grown all the way up the big metal clothesline poles in our back yard. The cucumber vines and flowers look beautiful- kind of transforms those ugly poles into something less offensive! We did five different types of bell pepper- green, yellow, red, orange, and purple. Yes, purple. I hope they turn out really purple, that would be too cool. I also have potatoes planted, those are growing like mad. The tomatoes have gotten taller than me (admittedly, that’s not a whole lot… I’m only 5’1) and I have been struggling with stakes, cages, and bailing twine in an effort to keep the darn things from falling over.

We did meat chickens this year as well, the last of them were processed and frozen about a month ago. I am planning to do a lot more of that this fall, and next spring. Very cheap to buy the chicks and raise them, and it only takes 5-7 weeks to get a 6-8 pound bird. We’ll never be able to eat Walmart chicken with much enjoyment again- my birds taste a thousand times better! It’s also nice to know that the bird we are eating lived in clean conditions, got to enjoy the grass, bugs, and sunshine, and even got handfuls of popcorn or strawberries as treats. No antibiotics, no sick birds, no horrible living conditions. My birds live wonderful lives, and are processed humanely without any extra stress. I am considering getting enough chicks this fall to sell chicken to friends. I’ve had a few people ask, seems like a good idea.

Our laying chickens are getting big. I’ve got two hens laying right now. One is a beautiful white Silkie, and the other is my beloved frizzled Silkie. Both hens have had some issues, one prolapsed after laying an egg, so she is being kept in a milk crate with a blanket in the living room right now until I know she’s recovered. I ended up selling two of our Easter Eggers, chickens that lay blue, green, or pink eggs. I also sold the two Black Sexlinks. I decided I would rather just have my couple of Easter Eggers and my herd of fluffy little Sikies. I don’t need a whole lot of big eggs, the little Silkie eggs will be sufficient for me!

It’s been too hot to ride Rocket, and too much money anyway. Gas prices are so high I just cannot afford to pay gas to have Rocket hauled to our hunter paces. He doesn’t seem to depressed about his vacation from work! He’s fat and shiny, and living the life.

Jaymes has been doing really well. He has gotten to where he will tell me about his day, and he can sort of have a conversation. He especially enjoys going over what his stuffed animals eat and drink. In case you did not know, Silver Noctopus eats fishies. Silver and orange fishies. He drinks water. Jellyfish eats snails, and drinks root beer. Jaymes likes to boss his friends around too, telling them things like “no biting, Silver Noctopus.” It’s really funny when he lectures the offending stuffed animal.

Jaymes had his med management appointment last Thursday, and the psych was really amazed at how much he has changed. She was really impressed when I told him to stop doing something, and he listened. We decided not to mess with a good thing, and keep the meds right where they are. We’re coming up on a year from when Jaymes was in crisis, and spent that ten days at the inpatient psych unit at Baptist. Never want to repeat that again.

Jaymes goes to summer camp on Sunday. He is all enrolled and paid up with Camp Royall, one of the camps run by the Autism Society of NC. He will spend an entire week at sleepover camp, swimming and playing and having the time of his life. He is especially excited to do art projects. He tells everyone “I going to camp. Going to do art with the glitter.” I think he will just love it. It makes me happy that at least he gets to do one thing the “normal” kids get to do. Every kid should get to experience camp at some point. It will be really weird not having him home though, I’ve never been away from him for a week solid. We plan to make it a special week for Sierra. Jason took off the whole week for his vacation time, and we’re going to take Sisi to the zoo, to her first movie, and lots of other fun things. She deserves her own special time with mommy and daddy- I know how hard it must be to have a Jaymes as a brother. She puts up with a lot, and she is really mature for an almost five year old.

I found out that Jaymes will be getting a new school principal and vice principal- something that gets my nerves going again. I actually really liked Mrs. Cannon, our current principal. I think that after two years of dealing with me, we’ve come to understand how to work together and make things work best for everyone. It makes me want to scream to think I’m going to have to spend another year or more with someone who does not know Jaymes at all, trying to advocate for him. It’s very frustrating. I don’t like change, I guess. I get used to people. I really like Mrs. Cannon, and I also really like Mr. Moss, the vice principal. He’s a very mellow guy, very easy to work with on issues, just a very good guy all around. It will be hard to get used to two new people who do have a big impact on how the school year will go for Jaymes.

We have been so lucky, this last few months, to have Jaymes back with his teacher from last year, Mrs. Colditz. She is a fantastic teacher. She cares about Jaymes, and she and I really get along wonderfully. Nothing like the nightmare that was the original teacher Jaymes had this school year. That was a total waste of half the school year. Thankfully, he made up for some of that wasted time once he was placed back with Mrs. Colditz. I am praying he will have her again next year. She is one of only two teachers I trust completely with my little guy.

We were truly lucky to have an exceptional Kindergarten teacher this year too. He’s had teachers who tolerate his time in their room for circle time and stuff… But Mrs. Walter went above and beyond to make Jaymes part of her class, rather than “that autistic kid who comes in for a few subjects a day with an EC assistant.” She included him in EVERYTHING, and she did it happily- not grudgingly. I have never met a regular education teacher willing to go the extra mile like that for Jaymes. He got to go on all their field trips (and did wonderfully, by the way!), to the assemblies with her class, and he even got included in a school play. While that was a horrendous failure, the fact that he was included was incedible. I wish every teacher could be so openminded, willing to learn, and tolerant as Mrs. Walter. I kind of wish she’d teach first grade next year!

Mrs. Walter said some things at the last IEP meeting that really made both myself and my husband think. To us, we’re used to Jaymes as he is, so it can be hard to see which behaviors might be off putting to the “normal” kids. One thing that Mrs. Walter mentioned was the diaper thing. I never thought about it, but she’s right- what kid wouldn’t be a bit grossed out by a diaper? Especially if he is going toward someone to sit on their laps. He is nowhere near being potty trained, though we are still trying. He peed in the potty once for me, and never again. Jason and I have been trying to think of ways to cover up the diaper, so that kids won’t realize he is wearing one. I thought maybe putting on slightly large boys underwear over it might help. It’s worth a try at least.

The other thing touched on at the meeting was the fact that the spit wiping habit Jaymes has… Well, it’s just icky. Not only to kids, but to everyone. This one, I have been painfully aware of since it began. He cannot control it, the spit and wipe thing is an OCD type deal. It has all kind of lovely side effects- from red, painfully chafed skin on his face to a raccoon like appearance caused by the spit being wiped onto a dirty face, with dirty hands. Add to that the smell of a face constantly wiped with saliva, and you have a dirty faced, sore, slimy child who smells like rotten fruit all the time. Nothing we have tried has helped this, and I really think it is just going to have to run its course. It is what it is, it isn’t going to stop until it wants to stop.

We accept Jaymes for who he is, and we’re so desensitized to the ick and the smells and the diapers and the behavior. Sometimes we forget that not everyone deals with these things on a daily basis- and it’s ok for kids to be grossed out. We can’t force understanding and tolerance, but it Is wonderful to realize that in any situation, there are at least one or two or three kids who can look past the icky things and like Jaymes for who he is. The rest.. Well, they’re human and I can’t blame them for how they feel. Especially kindergarten kids.

I’m scared to death about next year. Jaymes will be a first grader, with new school administrators. New classmates, new regular ed teacher who may love him, or may be totally bugged by his presence. He may develop more bad habits, he may hit and kick and bite more next year than last year. Or, he may get put in with a kickass EC teacher and a kickass first grade teacher, and have a fantastic year. Only time will tell. For now, we’re ready to have a great summer, and get Jaymes working as best he can.

it's a lot like a good smack in the face with a frozen salmon

2011-05-24T19:03:00.000-07:00

I know I have not been blogging much at all, despite school being done for the summer (mine, not Jaymes's) and everything settling down somewhat. There has been a lot of craziness going on, and both myself and my husband are really coming to realize that no matter how hard we push Jaymes to get out there with the other kids, or how hard we push the school to accept him, Jaymes is autistic, and we don't have a happy ending at the end of the line somewhere.

We never grieved when he was first diagnosed. I think I dove into my researching in order to hide from the realization that there is no cure for autism, and that our lives would never truly be normal. I chose blissful ignorance, and my husband went with denial. It's worked well for us, up until now.

There isn't a lot left for me to research. I still look into legal stuff, as far as school goes, because no matter how much I learn, I need whatever I can get for these damned IEP meetings. But beyond that, all I really have left is reading stories of other families and their challenges with autism. Lately, for some reason, even the heartwarming stories make me want to cry. Not in a good way either. I don't know why. It just seems like for the both of us, the reality of autism has become so big and obvious that we can't avoid it anymore.

Jaymes will be eight in December. He'll be in first grade, after two years of Kindergarten. He will never catch up to the typically developing kids, and no amount of mainstreaming him is going to magically transform him. The school won't hold him back every year, because at some point he HAS to go on whether he has caught up or not. He'll never bring home sports trophies, he'll never win a spelling bee. Our lives will never be "normal." I do not hate the things about Jaymes that make him Jaymes- the funny sounds are ok. The need to hold my hand is ok. The carrying around of some sea critter with tentacles is fine. I don't care if he's twenty years old and carries his Jellyfish. I really don't. The thing that gets me down is that there are so many situations he will never feel safe in, so many activities he won't be able to do for various reasons. There are so many friends he won't make, and so many special events he won't be able to participate in.

I am ok with my husband and I never living a normal life. It's hard, but it's the reality. What kills me is knowing that JAYMES won't be able to live a normal life. What happens to him if something happens to me? What happens when he is an adult and I can't take care of him? What happens if he is still in diapers, twenty years from now?

The thing that really brought this whole thing to the level it is tonight, would be the school play I was so excited about. When I got the note home about it, I was both shocked that he was being included, and elated because I would get to see him in his play. I never thought I would get to go to a school play, sit down, take photos, and clap for my kid like everyone else. That he was even involved blew my mind. That was thanks to his truly wonderful regular-ed kindergarten teacher, Mrs. Walter. Prior to this teacher, Jaymes had not been included in much of anything. I was just so excited to see Jaymes so excited about something that was so "normal" and such a routine part of life for his non-disabled peers. He'd been doing the play practices, and had been doing great. He came home telling me about the play. He was so excited.

We wondered what he would do in the play. We wondered what songs he would sing. We wondered whether he would actually sing. We wondered if he had any lines to say. We wondered if he would wear a costume.

We should have wondered about more practical things. Would it be too loud? Would the many, many kindergarten kids make too big of a crowd? Would Jaymes be ok with the music? Would the crowd of parents frighten him? Would he be able to sit still? Should we have turned off his hearing aids? How would they keep his attention on the task, and keep him from wandering off?

It wasn't Jaymes's fault. I should have thought of these things. I'm his mom, it's my job to make sure he isn't put in a situation that is too much. I totally failed him on that. He tried to handle it, he sat with the other kids for the first ten minutes or so. He spotted me, four or five rows of seats back, despite my hiding behind a large bald gentleman. He made a break for it as his class filed in, then again a few minutes later. I brought him back, and told him to sit. He went, he sat, he popped up, ran to the microphone, and talked into it for a second until teachers put him back down. Then he got back up, and ran to me. This time he was starting to cry. I sent him back again, this time with promises of ice cream. He went back, he sat. As the first bunch of singing began, he RAN for me. I picked him up, and he was crying and shaking. He was covering his ears, and he desperately wanted out of the gym. We walked out into the lobby, and he sat there and shook and cried. Then I cried. And we looked like we were both insane. The vice principal tried to make me feel better, pointing out how well he had done at the practices. The sweet music teacher who teaches the EC classes music came over, and tried to make me feel better. She told me all about how hard these things are, even for normal kids. She was right, but I had to have my self pity moment.

I felt so horrible; both for putting Jaymes in an unfairly complicated situation, for Jaymes having "failed" in front of everyone, and for myself not getting to see him in his play. I know that Jaymes did the best he could, and he certainly did not fail anyone. It just felt like I spent so much time in the last few years pushing the school to accept Jaymes, and trying to show them that he could handle himself if he were included. It felt like I set him up to fail.

I didn't even know he was in this play until last week. I got a note home about it and I was so excited and so proud of Jaymes. I felt like it was a miracle, that I would get to have a special moment (one that many parents take for granted) I never thought I'd see. I know it's totally selfish to think this way... But I'm human and not above a little selfishness and self pity.

We walked around the school, which was empty and very quiet. Jaymes loved this. He stopped crying, and he stopped shaking. We came back up to the gym doors, and he started shaking and clinging again. Obviously we were not going back in there. Outside the one set of doors, there are a couple squishy couches with pillows. Jaymes laid down on one, and covered his head with a pillow. After a few minutes, he calmed down and emerged from his pillow cocoon and played with my iPhone. The boy loves his apps and he knows how to use the thing a lot better than I do. I was proud of him for being able to sit out there, where there was still a lot of singing and music from the play and clapping and everything else. He managed to sit there for the rest of the play, and then went back to the classroom with his group. By then he was happy, and calm. I was far from happy or calm, but I was glad the kiddo had managed to stay calm. When the gym emptied out; except for a handful of parents, kids, and staff, Jaymes and I went back in. He didn't want to at first, but once he realized it was quiet and empty, he was ok. We walked around and he looked at the three piggie's houses up on the stage.

When we got to the car, Jaymes hopped into his seat and said "can we go to Walmart? Jaymes want Chicken-In-A-Cup." So off we went, to Walmart.

I'm torn on this, feelings-wise. We handled the issue, Jaymes still listened to the play and sat still. Jaymes went back into the gym. It wasn't the disaster it could have been- he could have decked the kid next to him, or pulled down his pants or something. He could have started screeching on the stage. He responded very appropriately, considering how overwhelmed he was. I'm proud of him for knowing he had to get out and seeking me out.

On the other hand, it breaks my heart that this was so hard on him. I wish I'd gotten to see him enjoy his play, or even sit there without singing. I really wanted to feel like a normal, ordinary old mom. I wanted to brag about how well Jaymes did. I wanted people to see that he could do it. I know most of this isn't logical, nor is it fair to expect these things from Jaymes. I am far from upset with him, and I am proud of how he handled his fear. I'm just sad. It feels like a slap in the face, like he was just doing too well and maybe God felt the need to give me a very clear reminder than Jaymes is autistic, in case I'd forgotten.

I guess they're aware now...

2011-04-21T18:41:00.000-07:00

First of all, may I just say, happy autism awareness month! Though life has kept me far from the computer, Jaymes and I have been making our own unique brand of awareness. I will share that here, and once the massive mountain that is my school work due in the next couple weeks has gone down some, I will share the long version of the many, many things that have happened over the last couple months. I will quickly mention that Jaymes was finally moved out of the class with the teacher from hell, and he is doing VERY well now that he’s in class with a teacher who knows him, can teach him, and cares about him.

He’s far from perfect, but he’s doing so much better than in the other class. Of course the down side to that is the fact that this school year has pretty much been a waste of what little precious time Jaymes has to catch up. I’m thrilled to have the issues solved, but there’s what... Another month and a half of school left? And then what? I’ll get into that personal rant once the aforementioned mountain of school work is finished.

Jaymes is having some major issues with touch- he cannot deal with other kids touching him. Even so much as a tap on the shoulder and Jaymes is convinced that he has been viciously attacked- and he attacks back. We are working hard on this. He bit a little girl in the regular ed kindergarten class, quite badly, and I’m very unhappy with that. He’s lucky he did it at school, because if he’d done it at home, the gates of hell would have opened. We do NOT bite. But, that’s another rant for another time.

Back to our awareness efforts. Check out this fantastic article, featuring my cute little man, in our local paper for autism awareness month. It totally made my day. I love being able to reach out to my local community. With this blog, it’s mostly NOT local folks reading. I am thrilled to help anyone, but it’s especially neat to share resources locally too. Anyway, I had to cut the article apart and scan it in three pieces, so I hope it’s reasonably readable. Enjoy, and soon my rantings will be back, along with some new book reviews and maybe even a few book give aways!

Alive... Does that count for something?

2011-04-10T17:56:00.000-07:00

(Last photo is my mom and Boo at the Cultural Center in Port Charlotte, FL)

I hate that I have been away from the blogging for so long. Seems like everything has gone to hell in the last month. We found out my mom is very sick, and she recently was released from the hospital after an 8 hour surgery. I have not been able to see her in the last 3 weeks, because I had pneumonia from hell, and now currently am having dizzy spells and nausea. So I've not been online much. I'm about a month behind on my school work, and am probably failing two of my classes, but am having trouble getting up the desire to do much about it yet.

I had to make the decision to put my old dog Boo down on Friday. Technically she was my mom's dog, because she stayed with her when I moved out after high school... But this dog was my best and only friend as a messed up teen.

They sedated her first, at my request. Then I put a huge pile of dog cookies in front of her, and she scarfed them down as the needle went in. She died in mid-chew. I guess dying while eating the dog treats you couldn't normally have(dietary restrictions), is a good way to go. I made an ass of myself crying, but I knew that would happen.

I can't believe she is gone. Boo was part of my life from when we got her when I was 11. She was my only friend, and the only reason I survived my awful teen years. she brought joy to hundreds of people as a therapy dog, and she was my best friend.

We had a rough night on Friday, but my Lab, Echo seemed to know it (ironic, because while she is a wonderful dog, she is about as intelligent as a dandelion) and was super cuddly and snuggly. I relented and let her sleep in the bed with me, and she was really a comfort. I hate this part of having animals- the losing them. and in the last 3 losses I have had, every one of them went sort of the same way. I'd keep it together until the needle was in, and at the moment the vet was about to push the syringe in, I would think to myself "take in (insert animal name here) still breathing.. Because it's going to be gone in a second." That split second between life and death really sticks in my mind- it's something you just don't forget. I hate the feeling of feeling your pet go totally limp and just sink down while you're petting... I always want to keep petting because it makes it a little less real.

One thing I always did for Boo, from the time she was a puppy... You know that little tiny flap part of the dog's ear toward the back, it's super soft and just big enough to get one finger between the folds... I would get both my hands going with fingers in that little fold and scratch- she loved it. I did that all the way to the vet's yesterday (with the non-driving hand), and all through everything. I just kept thinking to myself "you'll never get to do it again." I hate the finality of it all.

Boo was the once in a lifetime dog. She was awesome in every way. I did everything with her. We did doggie drill team, obedience trials, agility, some breed showing. We swam, and walked, and did everything together for years. She was my closest friend, I loved her more than anyone. We walked from our house, to the place I boarded my horse one night after a fight with my mom... The walk took me a good five hours. It was normally a 30-45 min drive, down the highway. Somehow I did not get us killed. We walked through a construction zone in the country in pitch black, and somehow I didn't break a leg walking into ditches and holes, because I just followed Boo.

We won a cool pet trick competition once, at a fun show. You had 30 seconds to show off your trick. I taught Boo to do a series of three tricks, fast in a row. She'd shake hands, then do a high five, then jump up on her hind legs and give me a double high five. It was awesome.

I dressed her up, I put glitter on her, I painted her toenails. She had jackets and sweaters, and a billion leashes and collars.

We shared ice cream cones. I took her to the mall and stores and everywhere (she was a certified therapy dog, and back then no one questioned it, she just got to go with me wherever.) and she got me over my terror of going to public places alone. Having her there made me feel confident and not afraid.

One time I got on a photography and photoshop kick, and I took all the lamps in the house outside at night to photograph Boo with the digital camera. I got her to hold a whole stalk of broccoli in her mouth, who knows why. I wrapped her in Xmas lights for Xmas cards. I put bunny ears on her, and one time I made her into a fisherman dog by sewing stuffed fish all over a dog sweater. she was covered. I got 2 sets of baby booties, the pumpkin kind for halloween, and a pumpkin top headband. She looked SO cute in her booties. Black and orange go well together.

As a young teen, 13-14 I would think about what I would do if she died. I would think to myself that life would be empty without her. Looking back, I had underestimated how much it would hurt to let her go. The only thing that makes it better for me is knowing, without any doubt at all, that she was suffering. Boo not being able to chase squirrels, leap into the air after tennis balls, and swim like a duck on crack... Well, that wasn't Boo. Lying around being half dead was not something I ever wanted for Boo, and I do feel some solace in knowing that I did what had to be done.

I'm glad I was there, but I'm sick over it. Losing Boo was worse than losing my dog Chancie, or my mare, Lucy... Because Boo was a part of my life from 11 years old. I'm 25 now. That's how long we had her. It's like one of the most important pieces of my life is gone, and every time I think about our exploits in the past, I feel like I'm dying inside.

I feel terrible about everything. For pushing my mom to let me put Boo to sleep, while my mom was recovering from major surgery. For being so sad, when she has not been my dog for so long... And I feel like I'm almost afraid to talk to my mom because it just opens up that wound again and the grief just comes back.

So, I'm totally out of the swing of life right now. I can't keep up with my school mess, I'm a pitiful mess about the dog, and I'm sick all the time. My husband is losing patience with me needing to lie around all weekend... But I prefer his being annoyed at me over puking in a public place!

I will get back to blogging soon, I promise. But for now, I'm trying to reorganize and move on with everything I have dropped.

Quick update

2011-03-23T06:42:00.001-07:00

We have a lot of "stuff" going on, and it's really eaten up a lot of my spare time to write. I am coming back to write a real post though!

Jaymes is doing well at home, apparently not so much at school. Lots of behavior issues. They finally gave in and put him in the classroom I wanted him in- with a wonderful, very competent teacher who I have a lot of confidence in.

I found out one of my close family members has cancer, so that's very sad and stressful as well, and school is continuing to kick my butt. I am eagerly awaiting my break over the summer.

Anyway, bear with me, I will return to regular posting ASAP.

What I Learned from a Series of Crappy IEP Meetings: Part Two

2011-02-27T19:10:00.001-08:00

Put that OCD to work!

The topic of this next post is one that is currently serving me very, very well. You always hear (when asking advice about meetings or anything else school related) that documentation is vital. If you’re anything like me, ‘documenting’ means you try to keep track of at least half the pages of the most recent IEP, though you may not necessarily have any clue what order those pages actually go in. It might mean that you keep a mental record of the last few phone conversations you had with your child’s teacher. Sometimes at my house, it means that I can kinda-sorta remember what was said at the last IEP meeting. All the paperwork, and all the information can be really overwhelming. As a result, for a long time I would come home from meetings and chuck the folder of papers into the nearest drawer, then not look at them again until the day before the next meeting.

As things have gotten crazier and more difficult with Jaymes’ school, I finally got my butt in gear and got into the spirit of documentation. Until I got started, I never knew how addictive it is! Documentation has got to be the perfect job for someone with OCD… Or someone like me, who gets really into something once I finally get around to it. I might be a closet OCD sufferer. If so, I’m good with that, because I am reaping the reward of being insanely anal about documenting EVERYTHING.

I bought a blue binder with some folders and colored dividers. It was a total of maybe $10 at Walmart. While purchasing these materials, I also got the excitement of seeing a very large African-American gentleman dressed in a lovely red dress and fishnets. I consider the amusement factor worth spending that $10. I was tempted to suggest that he shave before wearing said fishnets, however, because the huge tufts of man-leg-hair sticking out between the holes of the fishnets kind of took away from the overall picture. I opted to keep my mouth shut, though, and paid for my materials.

I divided up my blue binder into sections. Each section got its own divider and folder, along with a nifty orange sticky note to scribble notes onto. The sections my personal book has are as follow, but bear in mind you can add to or take away some of the sections. Whatever worksbest for your organizational purposes. Back to the point… Here are my sections:

-Current issues: This section is the very first folder, where I stick papers of relevance to the most recent problems. Sometimes it is emails, or Jaymes school work samples. Sometimes it’s specific pages of his IEP, with changes written in some funky color that kept me from becoming bored at the time. Sometimes it is just a paper with a list of stuff to talk to the school principal about, along with doodles of purple ponies and horrendous writing that even I have some trouble deciphering. Basically, whatever relates to the current battle, lives in this section. When the problem is solved, those papers are re-categorized and the folder emptied in anticipation of the next crisis. And there always is one.

-Current IEP: This one is self explanatory. I actually changed the way I do it, now I keep the three most recent IEP’s, with most recent on top for easy access.

-Communication with the school: In this folder (which is frequently stuffed to the point of near explosion) I keep copies of every note I send to school. Also, copies of every email to and from the school. Everything organized chronologically, newest on top. When I first got into this documentation obsession, I had to go through my email account (I actually have an email account created solely for email communication with Jaymes school) and print off the last bunch of emails. Now in an effort to avoid that long and painful process, I print every email immediately after sending it. When I get replies, I print those and add them in. The biggest thing with this section of the book is to keep different issues together- that takes precedence over the chronological organization. I use paper clips to keep together a series of pages printed from a long email exchange. Those emails are organized again, newest on top, then paper clipped together and put into the mega-pile to be further organized.

-Behavior charts: This one is specific to Jaymes, and may or may not be a section anyone else on Earth would have a need for in their personal notebook. Jaymes comes home daily with a behavior sheet that actually breaks up his day into 30 minute to an hour chunks. Each teacher or assistant working with Jaymes for that time block scores his behavior according to a bunch of different categories, then adds their own note and finally initials it. I’ll go more into that in another blog post, because this chart the teachers came up with is pretty darn cool. The bigger issues Jaymes was having at school before his schedule change came out pretty much exclusively in behavior charts, which were at the time “sticker” reward type charts. When the time came for the IEP meeting I requested to solve the issue, I showed up with a small handful of the bad ones (because those were all I had thought to copy) and his teacher showed up with a handful of the good ones. We kind of canceled each other out! It made me seriously regret not copying every single sheet. My point would have been a whole lot easier to make, if I had. So now, EVERY behavior sheet gets copied and filed in the Behavior Charts section of the notebook- yes, chronologically. Have I mentioned yet that my purchase a few months ago of a printer that also makes copies and is a scanner was an awesome investment? I go through a log of ink, but it’s well worth it.

-Audio tapes: This section is actually a couple of those pencil bags that clip into the three ring binder. Each pencil bag holds 2-3 cassette tapes. Yes, I still use cassettes. I don’t like the MP3 type recorders, the good old fashioned ones at Walmart that only cost $24 are a lot easier to use. Before last year, I’d never taped anything. The thought of doing so freaked me out. But after an IEP meeting last year where things were promised (but never written into the actual IEP) and never delivered… I taped one meeting. That was it until a couple months ago, when this huge fuss over Jaymes teacher came up. I realized that a big part of why I was not accomplishing much was because I couldn’t remember what had been said. I get so anxious and so flustered that I immediately forget everything. So I started recording EVERY meeting. The first couple with the principal, then the actual IEP meeting. Just a warning- few teachers and school principals will do the happy dance and smile big when you walk into a meeting holding a tape recorder. It can make things decidedly tense. While they can’t tell you that recording is not allowed, they can (and will) send someone to locate a tape recorder and tape to record for themselves. This is a good thing. Everyone has their own re-playable version of each meeting. When I get home from a meeting or conference, I sit on the couch and listen to the tape. This is the time when my mind is calm enough to take notes and really hear what everyone is saying. Sometimes what I hear tells me that I’ve been a little too bitchy. Or, that I backed down way too easily. I almost always hear things that I had not heard the first time. The other thing good about the tapes is that they make it so people who wanted to be at the meeting, but could not make it, can at least hear what went on. My husband appreciates this, and you can also send copies of the tape to advocates, lawyers, or whoever you need to send to. Big thing with these: Make sure you know how to use the darn recorder BEFORE the meeting. And don’t test it by recording yourself saying something stupid, or singing badly… Chances are you will accidentally play it for the whole room when you try to set the recording up at your meeting. Ask me how I know… Actually, don’t. I’m trying to forget that one!

-The last section in my book is for progress reports. I organize them first by year (four in the school year, I believe), then newest on top. This one is pretty self explanatory, and pretty standard, from what others have told me.

Though I have not started on a couple new sections of my book, you can come up with a multitude of others- based on your personal level of OCD. Everything from lunch menus to medical forms, permission slips to attendance award certificates. Personalize it in whatever way makes most sense to you. If it doesn’t make sense to you, you will not be able to keep track of keeping everything organized and up to date because it just gets too frustrating. I recommend being better than me, also. I have an annoying habit of making copies then cramming them underneath a random section to file in later. When later finally comes, I spend forever trying to make sense of the rubble and I curse my lazy, procrastinating personality.

Once you’ve gotten organized, documented, and are sitting in your living room the day before a meeting… I can guarantee you will look into your notebook, breathe a sigh of relief, and pat yourself on the back for your diligence.

What I Learned from a Series of Crappy IEP Meetings: Part one

2011-02-24T16:35:00.000-08:00

Team means team…

The single most important thing I have learned though all these meetings has nothing to do with tactics, with laws, or with evaluations. It isn’t something that had to be deciphered out of a bunch of legal mumbo jumbo, and it wasn’t even anything all that complex. But as simple as the concept is, it had not dawned on me- even after a couple years worth of meetings!

I didn’t realize I was a part of the IEP team. I thought I invited as a courtesy, and that the group of big talking, well dressed school staff were the IEP team. I didn’t know that as part of the IEP team, I was an equal. I didn’t know that I could disagree, that I could push for things, or that I could have any input on the goals and specifics put into the IEP. I also did not realize I could bring backup to the meetings.

As the parent (or parents), we have a unique perspective and intimate knowledge of our children. We know what makes them happy, what ticks them off, what they care about… We know why they do some of the things they do. We can tell when they aren’t feeling quite right, even if only because they flap their hands a little more slowly than usual. We know when they are afraid, by the twitching of their lips and the snarfling sound coming out of their nose. We can tell when they are going to lose their cool, just by how they are holding our hand. We live with these kids. We know what makes them tick. And because we have that huge advantage on our side, it is our responsibility to speak up for them when school staff may or may not be able to glean anything from those minute little changes that to us, are as obvious as a flaming chicken in a tree house in the middle of August.

On top of that, most of us spend a lot of time taking our kids to therapies. So when the school can’t figure out how to make little Jaymes sit still in his seat, I can think back to that last OT session, and remember that the OT was able to get Jaymes to sit and complete a puzzle by plopping him in a beanbag chair with a weighted lap blanket. From my experience, few teachers immediately think “oh, he won’t sit still. Where’s that beanbag chair?” But, again from my experience, many teachers will be perfectly happy to try that out if the parent suggests it. We cannot expect teachers to immediately jump to creative, “outside the box” ideas every time there is an issue. And since we know what has been working for our kids, and we’ve had awesome therapists who have explained the how and why of it all to us… Well, again, it is our responsibility to share that information. Unfortunately, we all run into teachers who know it all and will not bother with trying- but if we know something works… Well, the squeaky wheel gets the grease. Eventually, they will be sick to death of hearing about that beanbag chair and weighted blanket and will try it out if only to shut us up. And it might do the trick and solve the problem. Or not. If not, we move on to the next idea. And the next. And the next.

We know our kids. I think it can safely be said that if the parent thinks a particular IEP goal is ridiculous, then that parent is well within their rights to try to nix it. That could be because the goal in question is too difficult or too easy. The goal could also be too stupid. An example of this would the one on my son’s current IEP as a social skills goal that says “Jaymes will learn his classmates first and last names.” Memorizing names is not a social skills goal. It’s a pointless memorization taking up room where a real social skills goal could be. Play skills, conversational skills, even just basic “how to behave in the regular kindergarten classroom” skills.

I have found that given a good enough explanation of why the goal is inappropriate, and offered a more suitable goal instead, the IEP team will usually not fight it too much. And if they do, holding out and arguing long enough can be useful. Just remember that parents aren’t always right either… If another member of the team can explain why the goal is appropriate, you aren’t losing anything by agreeing. Only if you actually agree, of course. Nothing wrong with asking for detailed explanation and the appropriate definitions if needed, either- even if you can actually see the teacher’s hair going grey as she breaks it all down into whatever size chunks it needs to be broken down into.

Finally, remember that (beyond what the state requires in the way of school staff) the IEP team can include whoever knows that child, or can offer support or a different perspective. That means other family members, outside therapists, advocates, parent educators, friends. Anyone who knows the child and can contribute positively. By positively, I mean that I would never in a million years bring my mother-in-law to an IEP meeting. I may be a pain in the rear, but even I know that one would be crossing a line.

It’s nice to warn the school ahead of time if you’re planning to bring in slew of people (or just if you’re bringing an advocate- that announcement tends to have a less than cuddly reception, but is infinitely worse when you just show up with one- ask me how I know…) as a courtesy, and so that there will be enough room for everyone! You may well still end up in a tiny, windowless, airless office with fifteen people crammed elbow to elbow… But at least the odds of a less snuggly environment improve with notice.

IEP meetings are not about the school, not about the parent, and not about “us” versus “them.” IEP meetings are our kid’s meetings. As the parents, we have the right to take the reins and help direct that meeting without feeling intimidated or unimportant. Without the parent, no IEP team could be complete.

It is so hard to go into those meetings feeling like you’re on the same level as the “professionals.” It’s something I am still working on. But until I accomplish that whole self confidence thing, I do a damn good job of faking it. As our wonderful ECAC parent educator says, I’m building that spine- vertebra by vertebra.

Introduction to "What I Learned from a Series of Crappy IEP Meetings"

2011-02-23T13:58:00.000-08:00

I have learned a lot about IEP meetings since Jaymes started going to public school four years ago. A lot of what I’ve learned, I learned by totally screwing up. Some of those mistakes were no big deal, some of them were huge. All of them taught me something.

I remember the first IEP meeting I ever attended. Jaymes was three and just starting in Pre-K, and I had no idea what the meeting was for, or what it would be like. I was very nervous, as sitting in a room full of people with college degrees and years of teaching experience was incredibly daunting. I was so nervous, in fact, that I did not say a word. I listened, I nodded, and I spoke only when directly asked a question. I assumed that they knew best, and that I was only there as a sort of representative for my son. I had no idea I was actually part of the team, and that I had just as much right to speak up as anyone in the room.

Throughout Jaymes first year of school, I continued to not have the slightest clue what an IEP meant. I doubt I even read the actual document. At one point, Jaymes was having a lot of weird unexplained fevers. Though he saw the doctor constantly and we had a note saying that he could stay at school unless the fever went above a certain reading, the school called me regularly to come pick him up. At the time, I assumed that an IEP meeting would be the appropriate place to bring up this issue. Thinking I was being super smart in figuring this out, I asked for the meeting. And I got it. Boy was that embarrassing.

When we moved to North Carolina, I still didn’t really understand much about the process, the meeting, or the document itself. We had a couple meetings where I nodded yes and signed the appropriate places, and that was that. But then when Jaymes was in his second year of Pre-K at his current school, one of the school staff handed me a flyer for a parent workshop done by the Exceptional Children’s Assistance Center. I am so, so very glad I got that flyer.

I went to the workshop, where I learned a whole lot about my rights and responsibilities as a parent in an IEP meeting, and in the school setting in general. I learned that no, all IEP’s are not cookie cutter documents, and that YES, parents have just as much say as anyone else does in the meeting.

The funny thing was that the week prior to the workshop, Jaymes had had his Kindergarten transition IEP meeting, where the team decided that Jaymes would be put in one of the self contained AU (I forget the new, more PC name for the AU rooms) classroom with no interaction with his nondisabled peers. After the workshop ended, it dawned on me that I had seriously screwed up. I started talking to the presenter, Judi Archer, about how I’d totally messed up the meeting and I had no idea he could get time in the regular education classes or that he could get such-and-such services. I was really frantic about it, in my head, I’d ruined the school year for my little guy without it even having begun yet.

Judi was amazing. She gave me a long list of things to discuss with the school. She explained what was reasonable to ask for, and what was not. She filled my head, and my notebook, with a wealth of information. It was really incredible.

That was a turning point for me. I requested another meeting. As I recall, it didn’t go well… I looked through the blog archives trying to find it, but I got impatient about fifteen minutes in and gave up. If you want to read it that badly, it should be in April, May, or June of 2008 or 2009. I honestly cannot remember.

Anyway, the point of this post is to take a look back over the last few years, and to really think about how far I have come as a mom, with all the wonderful people who have helped me- in particular Judi and Doreen at ECAC. Thanks to these great ladies, I understand (mostly) the meetings. I can read the actual IEP and make sense of most of it. I’m not afraid to speak up anymore, because I know what is and is not reasonable. I know the whole “knowledge is power” thing has seriously been overdone- but in this case, it is SO true.

While I have a long way to go and a ton more to learn about the whole IEP process, meetings, paperwork, and dealing with the school in general; I’ve decided that I’d like to do a series of blog posts offering some of the basic things I have learned, that have helped me get Jaymes the best education possible with the least amount of hassle. So consider this an introduction. The “What I learned from a series of crappy IEP meetings” series should be fun for me to write, and may be helpful to someone else out there just starting out on the crazy journey of negotiating (arguing?) with their local public school system.

That school update I should have written two weeks ago

2011-02-12T15:15:00.000-08:00

You may have noticed this blog has remained pretty much untouched for the last couple of weeks. First, I managed to sprain my elbow, resulting in a really ridiculous looking sling and quite a bit of pin. Then, almost exactly one week later, I sprained my wrist. This resulted in my getting the pleasure of wearing a wrist brace for the next few weeks, in hopes that things will fix themselves and I don't have to spend more money on doctors visits. Not surprisingly, not having the use of either arm kind of made for trouble typing. And writing. And eating. And driving. But now that I ditched the sling, I have decent use of my left hand, and the brace can come off for brief periods so I can type/eat/etc. I'm horrendously behind on school work... So what am I doing? Writing a blog post. You see where my priorities are. Shame.

We had an IEP meeting a couple of weeks ago, to discuss the new schedule for Jaymes for school and to try and work out some of the issues I have had with his teacher. Prior to the IEP meeting, I had a couple meetings with the principal, but as much as I like her, it's her job to defend teachers- and she does it well. Even when they are wrong.

I wanted Jaymes out of his current classroom for a lot of reasons... The biggest of which is the fact that the teacher was punishing him for every little thing, taking away "stickers" or "smiley faces" and he would come home horribly stressed and unhappy and scratch his face bloody. I did actually try to work this out with the teacher before I brought the principal into it, but this particular teacher is one who clearly knows it all, and refuses to acknowledge that maybe someone else might have some valid ideas and thoughts on a situation. She seems very set in her ways, unlike last year's teacher who was fantastic and creative. Mrs. C worked like crazy with the school OT to make things work for Jaymes- and he did well with that. This year's teacher... Yeah. Not half the teacher Mrs. C is. I finally gave up trying to deal with the woman, the constant condescension and nasty back and forth both in person and in notes to school was just too much. We'd get notes home saying that Jaymes lost stickers because "he made too many messes," "he talked at lunch time," and equally ridiculous rule infractions. When I explained to her that Jaymes gets so upset over the stupid stickers that he hurts himself, she told me that "he has to follow the rules like everyone else." Fair enough, he DOES need to follow the rules. But, when he is so distraught over a stupid sticker or a smiley face that he shreds his face bloody over it... A change needs to be made. A little compassion would have been nice, at the very least. All I got was that he has to follow the rules, then a few times denials that he even does it. Despite having had therapists outside school see it, the school bus driver see it, the teachers and staff at school see it... I mean really, what parent would make something like that up?!

Anyway, the straw that broke the camels back... One day he came home with a note that just said something like "Jaymes had a bad day." So I wrote a note back, asking what it was specifically that made it a bad day, so we could work on the issues at home. Instead of acting like a normal human being, and writing back "Jaymes had some trouble sitting still, and he ripped a book," I get a TWO page letter, literally listing all the things Jaymes does wrong. One part of the letter was written by the teacher, and it's no coincidence that this part of that letter was written in such a way that no one could take offense to any part of it... The other, longer part was written by the male teacher's aide, who said things like "Jaymes is frequently found wandering the room" "ripping things" etc... The letter ended by telling us that without the parents reinforcing things at home, the school cannot accomplish anything... Not the best thing to tell me. This happened on a Thursday, and luckily for the innocent principal, she was away until Monday. Had she been in while I was that upset, the entire school (and half of the city of Kernersville) would have heard me bellowing. I have NEVER been upset enough with any school to raise my voice. As many of you know, I'm actually pretty chicken, and have a lot of trouble speaking up. But I was ready to blast someone.

By that Friday night, I was doing my normal "oh, what if I'm overreacting, what if it's all in my head" thing, and was afraid I'd end up backing down. We decided it would be nice to take the kids to McDonalds for dinner, and I am SO glad we did. Sitting at the table next to us was the mother of another little boy in Jaymes' class. I don't know any of the other parents, so I didn't recognize her- but she recognized Jaymes and we got to talking. I didn't want to bring up my issue with this teacher in case she was a huge fan of her (that would be awkward!), so imagine my surprise when she started ranting about the teacher- FOR THE SAME REASONS! That someone else had a child coming home distraught, and hurting himself over being nitpicked the same way Jaymes was being nitpicked... well that was a turning point for me. In the past, whenever I have had a big issue with the school, I've felt guilty advocating for Jaymes. I don't like to be a witch, and I don't like to make waves. Thanks to this whole mess, I don't feel guilty anymore. I feel empowered. I am SO happy we went to McDonalds that day, or I would never have known and might have dropped the whole thing.

At this point, I pulled Jaymes out of school. He stayed home for two weeks. I met with the principal and tried to make my case... But her opinion is that this teacher is just "blunt, she says it like it is." Fair enough, she is entitled to her option. But in the real world, there is a five letter word that describes the teacher perfectly- and it is not "blunt."

Jaymes didn't end up with two weeks of unexcused absences, the timing was convenient that he got a severe ear infection right around that time and the ENT doc asked me to keep him home.

In the end, my request for him to change classrooms was denied. Not thrilled about that. I don't understand why the school stands behind teachers like this. There is a reason this particular school has a horrible reputation (in the autism community, l0cally) as one of the worst schools in the county for kids with special needs. They're one of the best for regular education- the school is beautiful, the staff are fantastic. Their scores are through the roof. You would think that they would want to work to rebuild a decent reputation in the weaker section-the EC classes. What I have seen is that unless a parent pushes, the school wants to warehouse these kids in self contained classrooms that do not even go to eat lunch in the cafeteria. They stay in those classes until middle school, where they usually end up at Lowrance Middle- a school that is (I believe) 100% EC (special ed). I have a friend with a son who started there last year, and one day his son came home with bruises from elbow to shoulder. No way in hell is Jaymes ever going there. Which is why I push so hard for him to be included in the regular ed classes too- he needs every chance he can possibly get. That school is where summer school is done, and last summer I had one of the summer staff tell me that Jaymes will never have to go to Lowrance. He's capable of more, with the proper support.

The thing is, with last year's teacher, we learned how to work together, and it ended up really, really good for Jaymes. While I doubt a lot of the other kids are getting the best education, I knew Jaymes was. This year... Not so much. Seems like he has lost more skills than he has gained, and that he's gained lots of negative behaviors as a result of being in the class with kids much lower functioning than he is. The lack of supervision is the big issue there too- if he had adequate supervision, the issues would be minimal. But even the teacher's aide who wrote me that letter confirmed what I already knew, in saying that Jaymes is often "found" wandering the room. Found? Really? That's like me saying I "found" Jaymes on the roof. I already knew this though, because all school year he has come home with his backpack stuffed with school property. Books, toys, pencil grips, etc. Things he should not have had, things they didn't even know he had put into his backpack. Now, this is a classroom with three staff and seven kids. It's not a big room, and for Jaymes to fill his backpack with stuff he would have had to walk across the room, get his backpack of of his cubby, walk back across the room, fill it up, then again cross the room to put the backpack up. How was he getting away with this? He's sneaky, and he's fast- but he's not The Flash.

In the IEP meeting this issue came up, and it sparked the beginning of a nasty back and forth between the teacher and myself. When I mentioned the lack of supervision, evidenced by Jaymes stealing, the teacher's response was to turn it back on me by saying "Well I haven't seen YOU return anything yet."

For one thing, I've tried. dozens of times. On top of the stolen stuff, I get other kids soiled underwear (Jaymes is in diapers, he doesn't wear underwear) and other clothing sent home. Sometimes I get other kids IEPs (can we say "confidential document?"). Sometimes I get other kids lunches. I try to send things back with notes, and they come right on back to me because they don't look in the backpack. Just this week, we got home some kids dirty underpants in a baggie. I stuck a post-it note on them that said "not ours" and sent them back. Guess what was still in the backpack the next afternoon? You guessed it. They're sitting in the backpack now, awaiting another attempted return. At some point, it got ridiculous to try to send home all the stuff he came home with. And being treated like crap by the teacher makes me a WHOLE lot less likely to do so. I'm sure not going to drive the giant pile of stuff over there and hand it to her myself- why do the extra courtesy, when I'm treated like that?

Secondly, why their stuff has not been returned is not the answer to the question I asked. It's a less than clever way to turn the heat off of her, and onto me. Except that I don't really care, and it made her look ridiculous. If they want their stuff back, after all the times I've tried to send it back in, they can drive on out and pick it up themselves. I didn't let him steal it to begin with- if he'd been watched, the stuff would still be in the classroom, where it belongs. Jaymes is punished every time he steals, so the lesson is still being learned.

Anyway, the IEP was a joke, and I was really disappointed that the principal didn't see a reason to put a stop to the back and forth nastiness. The teacher seems to need to have the last word on everything- right down to tiny stuff. At one point the principal and I were talking about limiting Jaymes' sugary food intake... I said that I try to keep sugary treats to a minimum because they make him nutty- which they do. Teacher pipes up with "Well I just read a study that said sugar doesn't make kids hyper." Uh, ok. Congrats on that. How about I spend a weekend stuffing Jaymes with candy, then see how his day the next Monday goes? Really, who argues about a parent wanting to limit their kids candy consumption? It's just petty.

I did end up speaking to the head of the EC department for the school district, because Jaymes was being punished for things that are directly related to his disability- and there are laws against that. He put me into contact with the zone EC supervisor... She called and left me a message, saying that she'd spoken to the school, and was told we had a great IEP meeting and that everything was solved. That if I had concerns, to go ahead and call her. I'm not great on the phone, so I emailed her. I felt like it needed to be said that the issue was not totally solved, and if we had a great meeting, I must have been at a different one. I have never been so furious or frustrated at an IEP meeting. The only thing that meeting accomplished was giving me some definitions I needed. Prior to the meeting, I'd cooled down in regards to how upset I was at the teacher... by the end of the meeting, I had a strong desire to wallop her across the head with a Mackerel. Which apparently is not legal. But the imagery made me feel immensely better. As we walked out, I made it clear to the principal that I want nothing at all to do with this teacher. I don't feel she has a thing to offer Jaymes (or any other child, for that matter), and I'm over the nastiness. She and I will not accomplish anything by meeting, so I'm just going to deal with the good teacher, Mrs. C.

Which brings me to the positive part of the whole mess. The principal did decide we needed to change something. She had the current teacher and Mrs. C work out a schedule together, and I actually really like it. Obviously, I don't want Jaymes anywhere near the one teacher, but this is the next best solution. Basically, every 30-45 minutes he switches between the current teacher's room, Mrs. C's room, and the regular ed kindergarten. He spends the majority of time with Mrs. C and Mr. H- and much much less with his original teacher. Thank God for small miracles.

Jaymes has come home every day, with a huge grin on his face. He tells me "Jaymes went to Mrs. C's class!" or "Jaymes love Mr. H!" He doesn't hurt himself. He doesn't scream and cry. He doesn't beg not to go to school anymore. He is a different child. I think that speaks for itself- the issue was the teacher. I have heard she is retiring, hopefully that is true. If she is, I'll leave things as they are this year, knowing he won't be dealing with her next year. If she will be here, there will be an almighty explosion if the school thinks Jaymes will spend ANY time near the woman next year.

The thing I hate about all this is that Jaymes was retained for a reason. I wanted him to get extra time to catch up and get ready to go out to the regular ed first grade next year. Half the year was wasted trying to work with a teacher who should have retired years ago. THAT frustrates me beyond belief.

So it's been one big, ugly mess and one hell of a headache. The teacher hasn't learned a thing from this, and the school has done nothing to show her that she needs to learn a little tolerance and compassion- or find a more suitable career. Perhaps as a high school teacher or a parole officer.

But in the end, Jaymes is better off than he was, and I am grateful to the staff who worked this new schedule out, and to the principal for meeting with me time and time again to discuss it. And really, I'm actually grateful to the teacher too. Without her tremendous failure at teaching Jaymes, I'd still have trouble speaking up at IEP meetings. I don't feel guilty anymore, and I don't hold anything back. That's a gift, especially to someone who has been "building a spine, vertebra(e?) by vertebra(e?)."

Another day this week I'll scan the now famous two page letter that set off the explosion and post it up here. I'm curious whether others who do not have a stake in the situation will get out of it the offensiveness that I did.

How cool is this?!

2011-01-26T09:39:00.001-08:00

Check out this article! Yes, I know some is cut off, blame my evil scanner.

Jaymes visits Bumper Jumpers, mommy gets burned

2011-01-25T14:49:00.000-08:00

As a belated birthday gift from his grandmother, Jaymes was treated to a fun day of bouncing at Bumper Jumpers, in Greensboro. I thought that because the gift was belated, it would not be too horrible for the post talking about it to be belated as well.

We’ve been to Bumper Jumpers three times now, I think. The cool thing about it is that parents get to play too- unlike those stupid, incredibly fun inflatables at the fair that grownups don’t get to do because we exceed their silly weight limits. The place is a LOT of fun, although their air conditioning is very minimal and the staff are less than autism-friendly. This was the first time in the last year (I think) that we’d been, and there were a couple new bouncy houses. The coolest one (and naturally, the one Jaymes insisted doing repeatedly) was an obstacle course, styled along the lines of Nascar.

Sadly, these bounce houses are really styled for kids, or at least incredibly bendy skinny people who are in pretty good shape. Did this stop me? Of course not. It probably should have though!

The kids bolted right into the Nascar bouncy, squirming between the pit of little inflate-y squares that constituted the beginning of the obstacle course. I figured I could walk through, by keeping my legs squeezed between the very narrow path between said square things. This was not to be. The space was really too small for adult feet, and served only to bind my legs together and take away what little natural balance I ever had. The result was my best impression of a turtle, on my back surrounded by little inflated squares. No amount of flailing did me any good, so I got the bright idea to squirm snake-style through the rest. At this point, the kids were long gone and there was very little hope of catching up.

Once I extracted myself from part one of the ordeal, I came face to face with a tunnel that would have been plenty tall and plenty wide- had it not been lined with mesh of some sort that made it one heck of a tight fit. Slithering, again, proved to be my only option. Upon reaching daylight at the other end, I could not help but think that this was probably how babies felt as they come into the world. My first view was of Jaymes, paralyzed with laughter at my predicament. That is, until he realized I was not actually stuck. Then he bolted with an evil giggle.

The tunnel opened out to an open area that thankfully was tall enough for me to stand up, and wide enough for me to move. The only issue was the eight to ten foot inflatable climbing wall that loomed above me. Of course my kids (and some very tiny little toddlers that had clambered past my flailing turtle impression earlier) had no issue climbing up there. I think that little children are like mountain goats. Me, not so much.

It was with great effort (and much labored breathing) that I dragged my out of shape, arthritic body up the ladder. Being short of breath after my exertion, I sat at the top a minute to breathe. Neither kid was in sight, they’d long ago gotten bored with my pitiful attempt at keeping up. I wasn’t even exciting enough to laugh at anymore! I decided I needed to hurry up and find Jaymes before he bit a hole in something or assaulted a tiny child (or grabbing some random man to see if he might be wearing a belt) and hopped over the edge to slide down. I kind of expected to have a nice, fun slide down. It was to be the one peaceful, non-exhausting part of the bouncy house. Except apparently, those slides give some nasty rubber burns. Down I went with a WOOOOSH. My arms made friends with the surface of the slide, and I ended up with some very impressive bouncy house slide burns!

Really though, the day was a lot of fun. The kids had a ball, and I got a good workout. I will say that Bumper Jumpers is not exactly arthritic mommy friendly!

that belated birthday post

2011-01-16T17:19:00.000-08:00

I meant to do this post a long time ago. Like actually around Jaymes' birthday. Obviously, that did not happen. Meant to write it last week. Didn't happen. Meant to do it a few days ago... Again, didn't happen. My official excuse is a lack of time, and it's actually a good excuse given the insanity that has been my experience with Jaymes' teacher this year. I'll wait to post anything about this one until I have some idea of how things are going to end up, but let's just say the whole school situation has blown up into one hell of an unpleasant mess. Anyway, back to the point.

Jaymes turned seven back on December 30th. It was a day of mixed emotions, for sure. Lots of good, and some sad too. Also, a little bit of misbehavior. His birthday this year fell on a Thursday, meaning a regular old day. We decided not to have a party, and instead use the money that would have gone to a party for getting Jaymes a slightly-too-expensive handheld game system. We originally were going to go with the Leapster thing, but looking at it I wasn't sure Jaymes would be able to figure it out. We ended up going with the Fisher Price IXL, which was about three times more expensive, but really cool. Jaymes always enjoyed playing the demo IXL that Target has, so I knew he'd be able to figure it out. Until we got it and started setting it up, I had no idea how cool it is! Each game is actually a couple of games, a coloring program similar to MS Paint on the computer, and a story with options for reading alone, or being read to. The games aren't cartridges that are stuck into the player- rather, they are computer CDs that you install then attach the game system via USB cable and transfer the games over. This means that games can constantly be rotated through so Jaymes doesn't get sick of them.

Not only does the IXL play games... It's also an MP3 player and you can also upload photos. I uploaded a bunch of Jaymes' favorite Raffi songs onto it, along with some photos of him at Halloween. He has the Monkey game that the system came with, a Spongebob one, and a Handy Manny game as well. He loves to play his music (specifically an incredibly annoying song, "Down by the Bay") while doing the drawing. He loves the story modes, and will actually spend hours giggling and playing the various games. I hope the thing is built tough though, an attached stylus is used and he pounds the living heck out of the screen.

Obviously, Jaymes thought his gifts were pretty cool. He also got a portable DVD player and a couple movies for when we're at appointments that take forever. Have not gotten a chance to use that yet.

I used my Christmas gift, the cake pan that makes perfect 3D trains, to make his birthday cake. Not only was it lactose free, but it was awesome. I made a "rainbow cake," something I looove making because it's so eay and so pretty. Basically, you divide the batter into six or seven small bowls and make each bowl a different color using food coloring. Then you slop spoonfuls of each color in together, creating what cooks into an edible rainbow. I then iced it up, and decorated each train with gel colors and candy. It turned out REALLY cool, and it was a lot of fun. Jaymes about had heart failure when he saw it. I shoved candles into each car, and that really made it cool too.

At some point, I think Jaymes thought we were not going to sing to him. So he stood up on a chair, and sang Happy Birthday to himself. It was really cute. We sang it a second time, which he enjoyed just as much as the first. He blew out his candles, and probably splashed the entire thing with mouth bacteria. He enjoyed that a LOT. The candles, not the bacteria.

The realization that my baby is SEVEN is a little crazy to me. Seven is kid-age, he's a boy and not my little baby. When they say time flies, they're not kidding. I started thinking about that, and got kind of depressed. It's really hard for me to see Jaymes as a seven year old, because he's really functioning at a lower level than my four year old. It's hard to see him as a big kid, when he's only 38 pounds. It's hard to see him growing up, when he is still in diapers, and still wants to be carried. I guess the hard thing for me is that I thought we'd be so much further by now. All these docs and therapists have skirted my questions about where on the spectrum Jaymes is... Which in a way made me feel like maybe in a few years he would grow out of it. Obviously that is neither realistic, or the case here. I don't even know that I'd want it to be. I don't know. But watching the seven year old down the road as he rides his little dirt bike and plays sports and has real kid conversations and friendships... How different Jaymes is really becomes painfully obvious. So I spent a bit of the day bummed out.

Then I started thinking about Jaymes gains, and how far he really has come. At two years old, he did nothing but scream and cry all day every day. At three, he screamed and cried and destroyed things. At four, he started talking. Slowly, first with just "cheese" and "popsicle." I remember video taping his barely intelligible pronunciation of "cheese" and being beyond excited. At five, he was giving us single words. At six, phrases. And now at seven... Full sentences a lot of the time. No, they don't all make sense. Yes, some of them are just echolalic. Some are nasty "shut your mouth, mommy." But then he sings Happy Birthday to himself. He walks up to me and asks "can I have more chips?" He runs by yelling "Jellyfish starts with J!" He knows most of his prepositions. He knows how to count to thirty (with a little stumbling around the teens) and how to spell his name. He knows how to ride a bike, and how to dress himself. He knows how to take a shower, and how to change his own diaper. He knows how to close the gate. He can draw a jellyfish with rainbow legs and a smiley mouth. He can help me cook. He can sing.

If I had been asked a few years ago if I thought Jaymes would ever do any of these things, I'd have laughed. I have long been guilty of underestimating what my son can do. But I've started to realize that if I assume that he can't, won't, do something- I'm not doing either of us any favors.

No, Jaymes isn't like the little blonde boy down the road, but that's ok. He has accomplished so much and come so far to become who he is now. His future holds a lot of struggle, but it also holds a lot of promise. I'm not ready to sit down and mourn the boy he could have been- I'm ready to fight twice as hard to get him every support and advantage he possibly can, to help him amaze me in a few more years.

Book Review: Behavior Solutions for the Inclusive Classroom

2011-01-08T12:08:00.000-08:00

This newest book that I recently finished is a little bit different than the usual ones. Not only is it not autism specific, it’s the type of book that you don’t necessarily have to read all the way through. It’s more of a handbook that one can refer to when needed.

The book is called Behavior Solutions for the Inclusive Classroom, and is written by Beth Aune, Beth Burt, and Peter Gennaro. Interestingly, this particular book has a LOT of your basic OT related advice- because one of the authors happens to be an OT! I think it is really fantastic to get that perspective in. The book gives valuable information to those who may not have access to OT services.

The OT point of view is so important, particularly in figuring out solutions to behavioral issues. As we moms of kids with autism know, behaviors can often stem from unmet sensory needs. Sometimes solving a behavior problem is as simple as providing a weighted blanket or handing a child a straw to chew on. Rather than focusing on consequences and rigid adherence to rules, the book really explains why certain behaviors occur and how meeting those unmet needs changes those things. In addition, ideas are put forth that offer a way to meet a child’s sensory need without drawing the attention of others and making the child seem different and thus less likely to end up being teased.

The book can be used by parents, teachers, therapists… Basically anyone who is working with a child exhibiting the behaviors discussed. And there are a LOT of behaviors. Most books seem like they focus on a small handful of things, leaving a whole lot out. The issues and their solutions can be applied to kids with autism, ADD/ADHD, mental health diagnoses, emotionally disturbed children, and those with various developmental disabilities. Some can even be applied to “normal” kids like my daughter.

This is definitely not the type of book you would read all the way through, then set back on the shelf. No, this one is meant to be frequently looked through. As it says on the cover “See a behavior, look it up!” I think that every inclusive classroom (or EC/special needs classroom) should have a copy. I’d offer my copy to my son’s school if I thought they might read and apply some of what they read. The way the book is laid out makes it super easy to flip around, find the info needed, and move on to the next thing. Suggestions for solutions are written very succinctly, taking a couple minutes at most to read- rather than taking up too much time in the midst of a situation.

Behaviors discussed include out of seat behaviors, fidgeting, hand flapping, covering ears, running away, putting head down, trouble with homework, losing things, missing assignments, poor handwriting, trouble following directions, saying rude things, clothing issues, talking too much, decision making, lack of eye contact, outbursts… The list goes on and on.

Not only is the book chock full of helpful information that can be applied to many different diagnoses, it is also fantastic because the tips range from very young or very severely impaired children, right on up to teenagers and higher functioning kiddos. There is great information for any child, any age, and any disability.

This book will definitely find itself opened time and time again, as I check out new behaviors and get ideas for how to deal with those. I see myself sharing it with friends too. The writing style is friendly and not overly professional, making it an easy read. I am really impressed with this one.

Product Review: Chore Chart/Picture Schedule

2010-12-29T17:06:00.000-08:00

In the last few months, I have been trying various methods to get Jaymes to calmly do the assorted daily living tasks that Sierra does on her own. Tried the PECS, and it was just too hard to keep up with because Jaymes has a habit of squirreling away the cards.Tried a written schedule on a white board, but Jaymes didn't have interest- aside from erasing the schedule and scribbling on the white board...

Anyway, I have finally had success! I found this fantastic Reward Chore Chart at My Precious Kid. It's actually meant to be for reminding kids of chores like cleaning their rooms, taking a bath, etc... Not really meant to be a picture schedule type deal, I guess. But, it actually functions as both!

The kit comes with a heavy duty cardboard back with an easel-style stand. Three hooks are labeled for morning, noon, and night. An extra hook is below those for "extra" chores. It also comes with a hook to hang it, but I used that as another hook to hang completed task cards on. The cards come with stickers that are pre-printed with typical daily chores, and there is also an entire page of blank stickers that you can either draw/write on or put in the printer to make fancier stickers. Finally, a plastic box sticks to the bottom right of the chart to place completed cards into.

Tokens are included, along with some suggestions of rewards to offer your child to "buy" with the tokens they have earned. There are a LOT of tokens, and in two different colors to denote different values.

Quality-wise, everything is really nice and heavy duty. Nicer than you would expect for the really reasonable price, actually. The board is a very heavy cardboard, with plastic stick-on hooks and the plastic card box. Cute animals on it makes it fun, and there is a large space at the top to write your child's name. The cards are heavy plastic, very durable and they handle the grabbing/yanking/pulling/occasional drooling on them very well.

The cards themselves are color coded for organization purposes, but as I was too excited to start working on it to actually read the instructions first, organization went out the window for us! The idea is that there are different colors for each part of the day (morning/noon/night) and then another color for the "extra" chores. Assuming you don't start slapping stickers onto cards all willy-nilly like me, you will LOVE how easy the system makes organizing your child's chores!

I took the pre-printed stickers/cards with tasks that actually apply to Jaymes (self care tasks, basic picking up, etc) and set aside the more advanced tasks (take out the trash, wash dishes) for future use. I drew and labeled a bunch of the extra blank stickers, and made cards for the things Jaymes needs to do daily but that were not included. A typical set of tasks for the day looks about like this:

(* means I made the card for that task)

Morning:

-Diaper change*
-Take meds (this card actually says "take my vitamin" but it's close enough and Jaymes recognizes the picture as "time for meds.")
-Get dressed*
-Shoes on*
-Sit at table*
-Breakfast*
-Drink soy milk* (this one is the best thing ever- I have struggled with getting him to drink his soy milk, he needs the calcium and since he cannot have "real" milk...)
-Clean my plate up from the table
-Brush teeth
-Brush hair
-Potty*

(Insert typical play time/going out to the grocery store..etc here)

Noon:

-Clean up my toys
-Read my book (this one says "read my book for 15 minutes" but I just use it as a reminder for a book in general)
-Potty*
-Sit at table*
-Eat lunch*
-Clean my plate from the table
-Nap time*

(Insert typical play time/going out to the grocery store..etc here)

Evening:

-Clean up my toys
-Sit at table*
-Eat dinner*
-Take my meds
-Take my bath
-Brush my teeth
-Brush my hair
-Get ready for bed
-Say something nice to my sister (is that not the coolest addition?)
-Go to bed

When we first started this, I kind of had a feeling that it would not work. Very few systems like this have actually accomplished much at home, and I was not sure that he would be able to understand the token system. As usual, I had really underestimated Jaymes!

Jaymes has done SO well with the system. He understands what each card means, and he understands that if he does it, he gets a token. He understands that he can "buy" candy or special items (like time on his game system) with his tokens. And unlike when I ask him to do something, he has respect for the cards and gets that if the card says to do it, he better do it. Not to say he has been 100% cooperative with it, of course... He's not perfect. But I have seen a HUGE difference. Before, I could not get him to drink his soy milk. He hated it, and would not even think about drinking it. I could not get him to put on his shoes. He will still scream at me (or the card), and fuss about the shoes... But he eventually gives in and puts them on. The "sit at the table" card has him actually sitting at the table to eat- instead of running around the house, pausing to grab a bite to eat before bolting off again.

He understands the routine, and it's building great habits. Jaymes thrives on structure, so he LOVES that he can look at his cards and know what he should be doing now, and what he'll be needing to do next. That is rewarding in itself to him, but then there are also the tokens to further reinforce good behavior. I started with giving him a token for each task, and letting him exchange the tokens for skittles every 2-3 cards. Once he understood that, I started letting him rack up tokens (showing him each time he earned one) and cash them in later. Once he got the idea that his saved up tokens could be used to get candy, I have now started giving him a token for every few cards (3-4 cards).

Originally, he was getting a skittle for cooperating with the chart, and that meant every few minutes. I'm not wild about stuffing the boy with candy, so that is why I started to cut back. I've taken it to the point of attaching higher prices to certain candies. Rewards go as follows (I need to make a printout showing pics of each reward, with circles representing tokens alongside):

-Skittle = 1 token
-Rainbow Twizzlers= 2 tokens
-Rainbow candy belts = 3 tokens
-Time playing with IXL game system = 5 tokens
-Cookie = 5 tokens

This will be something he'll have to learn slowly, I know that the concept is a little above where he is, cognitively... however, he understands that he asks for an item and I tell him how many tokens he needs to "pay." So it's a start, and I think it's a good math skill builder.

This token/card/chore chart system has made life SO much easier. Jaymes knows to look at his cards and to move completed cards himself. He always knows what is expected of him, and he understands that if he does not comply, he will not get a token. He is motivated because I keep a good variety of rewards that are VERY valuable to him, and the structure helps his little mind keep on track. This has helped SO much, since Jaymes is on winter break from school. Normally, school breaks are torture for all of us- Jaymes included. Jaymes likes his routine, he does not like to be in an unstructured environment. It's been a struggle for me to try and keep things as structured as they can be in our crazy home. The cards make it so much easier. I prepare the cards in advance- at night, I set up the morning's cards. In the morning, I set up the noon time cards. At noon, I set up the night time cards. sometimes I can set up a whole day's worth!

One especially cool thing that this product offers is a card labeled "say something nice to my brother/sister." You don't see that in many chore charts, behavior charts, or picture schedules. I know that I've never even thought about adding that as a task... But what a great idea! While on one hand, it's a little sad that being nice to Sierra has to be a task for Jaymes, it is what it is... Having that card motivates Jaymes to actually talk to, and give good night hugs to his sister- things he generally avoids at all costs. It's already become habit for him, before he goes to bed, he gives Sierra a hug and says good night.

I really love this item, and am super grateful to Kay at My Precious Kid for allowing me to test it out. This is a keeper, and I see it being an incredible tool for helping Jaymes get through his day with as little frustration as possible.

Check out Kay's store. My Precious Kid has an awesome inventory of items you cannot find just anywhere. We're talking Medical alert/ID bracelets, shoe ID tags, home and car safety items... Even child locator systems! Really cool stuff. I have never seen this many hard to find items that are perfect for our kids with autism and other developmental disabilities. Her prices are really reasonable too- something that online "specialty" type stores rarely manage!

A Timeless Christmas Tradition... DBTD Style. Hilarity and headless gingerbread men included.

2010-12-21T19:12:00.000-08:00

Update before the post... I finally made a Don't Bite the Dog Facebook page. Please "like" the page and share with your FB friends! Click Here.

A few days ago, I decided to impose a family activity on my unsuspecting family. My mother in law had brought us a gingerbread house kit at Thanksgiving, and amazingly it was all lactose free. Actually, that leads me to wonder how cheap the company that makes these must be. You know it’s all chemicals and water, dressed up to closely mimic the delightful flavor of icing. For once, I was ok with this.
Anyway, I assembled the troops around the kitchen island, with the kids on chairs to reach. Jaymes didn’t quite “get” what the plan was, but when he saw the Box the kit came in, he was all ears. Jason and I opened up the kit and started laying out all the cookie pieces of the house. We were not thrilled to see that both roof sections were cracked in two, presumably a result of having the box thrown into the trunk of the rental car then buried in other stuff. I decided that our wonderful Kodak moment was NOT going to be foiled by broken cookies, and attempted to glue the pieces together with icing. Initially, this worked perfectly.
Neither I, nor Jason, are all that impressive as far as building things goes. As I type this, visions of putting together a swingset, a “simple set pool” (there is nothing simple about it!), and a picnic table float through my mind… And this undertaking was no less… unique. We stood there looking at the box, and looking at the little plastic tray thing that the house is supposed to be built into, and wondering what on earth we were supposed to do. At some point, Jason figured out that it was upside down… To which I replied (as always) “I meant to do that. I was just testing you.”
Got the basic framework of the house up, and let it set for the required 15 minutes. At the end of that 15 minutes, I was thrilled to see the roof pieces seemed to be sticking together, and was convinced that I had triumphed over the forces of evil (uh… the makers of cheaply manufactured gingerbread houses.)
Jason took the task of squirting the icing out onto the various areas on the gingerbread house, and I played referee between the kids frenzied grabs at the various types of candies intended to decorate the house. I made them take turns putting on their candies. Jaymes took his decorating duties VERY seriously, while Sierra was more concerned with devouring three pieces of candy for every one that made it onto the house.
About five minutes into decorating, I started to notice that the roof seemed to be drooping slightly. I kind of hoped it was all in my mind, and ignored it. Another five minutes, and it was pretty obvious the roof was leaning inward in what looked like a very hazardous situation for any little gingerbread people living inside. I told the kids to decorate faster, and manned the camera. Sierra did great decorating carefully, but Jaymes wanted to put candies on with as much force as possible- the last thing this poor gingerbread house needed.
By the time most of the candies had been put on the house, the roof was barely attached, and leaning in at a crazy angle. Jason and I were laughing hysterically as we desperately attempted to finish the project before the inevitable, catastrophic cave-in occurred. We haven’t had fun and laughed like morons in awhile, it was actually a blast.
Once the photos were taken, and proof of our insane gingerbread-house-gone-wrong documented, I gave the kids the go-ahead to start the feeding frenzy. And like starving vultures, they descended upon the gingerbread house with purposeful brutality. It took about… ten minutes for most of the house to be devoured, the discarded ruins of the sad little house lying in delicious rubble on the little plastic tray. Next to a collapsed wall lay a tiny gingerbread man cookie without a head- courtesy of Sierra.
Ah, the joy of a timeless Christmas tradition, made hilarious and horrific by our quirky household. Enjoy the pictures of the carnage- I certainly do!

"Decorate and Celebrate"

2010-12-17T15:18:00.000-08:00

I am in the middle of the insanity of preparing for the holidays, dealing with the insurance company and body shop after my husband mutilated my poor little Kia, and finishing up all of this semester's final exams.... So, until I have some actual time to write, enjoy this fantastic article with ideas for holiday fun!

Decorate and Celebrate Together

Make a special day more memorable, or build a lasting family tradition, by creating a decoration or gift together with your child. Even if you’re craft-challenged, don’t give up - we found an inspiring web site filled with ideas – www.familyfun.go.com! We’ve included a few of our fav offerings below from that site, and added some other great sites, all with projects easy to enjoy with children of different abilities.

FamilyFun is chock full of inspiration! You’ll find craft projects for every season and even back-to-school ideas. Planning a birthday celebration? Check out their “Birthday Parties by Theme”, where unusual ideas abound. Would your child adore a birthday party with a music theme? How about bugs, a cooking party, or a complete guide to creating a birthday carnival? You’ll find it there, and so much more!

Time Capsule Ornament

http://familyfun.go.com/christmas/christmas-gifts-cards-decorations/christmas-decorations/christmas-ornaments/time-capsule-ornaments-796110/

A clear plastic ornament (the type that comes in two halves) filled with memories from the year. Write accomplishments on thin, colorful strips of paper, include photos, small mementos or charms and … voilà … you have an ornament your child can open every year. This is not just a holiday idea; consider using it at other times during the year too, to capture memories or accomplishments associated with events like the end of the school year, birthdays, or summer vacation. How about using the ornament to enclosure different positive thoughts about your child, what makes him special, her remarkable talents? Attach the ornaments to a tree branch you discover together, making a mobile that can hang in a child’s room?

Beaded Ornaments

http://familyfun.go.com/christmas/christmas-gifts-cards-decorations/christmas-decorations/christmas-ornaments/beaded-ornaments-662808/

Simple, colorful, and delightful! Let your child’s creativity blossom! These beaded ornaments are perfect for decorating your holiday tree, but equally wonderful as handmade gifts for teachers, family and friends. The idea is straightforward: string beads on pipe cleaners, then twist or connect into fun shapes, resulting in one-of-a-kind ornaments. For young children this provides fine-finger and eye-hand coordination exercises. For the child who is a little older, it’s a way to practice perspective taking while expressing creativity. “What colors does Aunt Marge like the best?” “What animal does your brother love? Let’s shape the ornament to look like that!”

Count Down

http://familyfun.go.com/christmas/christmas-decorations/festive-christmas-displays/a-stocking-countdown-calendar-671333/

Intended to count down the days until Christmas, this clever idea can be used to keep track of time for any approaching special occasion. Create a garland of colorful kids socks and put one small goodie (candy, game, note, gift) inside each sock. Depending on your child’s ability to track time, you could add a number or day of week on each sock with an erasable marker. Each day the child removes a sock, counting down each day with a little gift. You can accomplish the same concept by placing small gift bags on the mantel, or attaching small brown paper pages to a wide ribbon that can hand on the wall. It’s a great visual tool for kids with autism – as they take down a bag or sock they “see” the days remaining until Christmas or the special event.

Gift Box – Perfect for Mom and Dad

http://familyfun.go.com/crafts/holiday-seasonal-crafts/mothers-day-cards-gifts/mothers-day-gifts/mothers-day-box-661242/

This idea was developed for Mother’s Day, but it’s perfect for any other celebration, from Father’s Day to birthdays or Christmas. Decorate a shoe box, fill it with a variety of small, inexpensive, wrapped gifts, write a fun schedule for the day that includes when or where a gift can be opened. Simple yet appealing on so many levels. The entire day becomes special! It’s an easy-to-do gift that most children can manage and creates special memories from the child to mom, dad, family and friends.

IlluStory

http://www.creationsbyyou.com/kit/IlluStory.asp

What could be more fun than turning your child’s art and creativity into a real book? This kit comes with everything you need to do just that, including “Story Web” that helps children plan their story. (Great for honing executive functioning skills!) Once your work is done, submit it online or in the mail and they’ll turn it into a professionally typeset, hardbound book with a title, dedication and “About the Author” page. Use it just for fun, to motivate creativity, improve your child’s verbal and written expression, to preserve memories, or to make a unique gift for family and friends.

Creations by You

http://www.creationsbyyou.com/products.asp

The same company that delivers IlluStory has a variety of kits for making treasured keepsakes using your family photographs and children’s art, including clocks, mugs, calendars and watches.

Hand Wreath

http://www.michaels.com/Hands-On-Fall-Wreath/kn0567,default,pd.html?start=11&cgid=projects-kidsteachers-seasons-fallautumn

They call it a “fall” wreath made of hand prints you fashion from foam, but if you take this concept and change the colors to reflect the holiday or season, you’ll end up with a wonderful craft that makes a great gift for parents and grandparents. Add embellishments for sparkle and fun.

Paint Chip Photo Frame

http://www.bhg.com/crafts/home/accessories/easy-crafts-with-photos/?page=16

So easy and so colorful…just pick up paint chips in your favorite colors and use them to create mats for photos. Use the matting that came with a frame as your base, or cut your own cardboard base to create an entire frame.

Snow Globes

http://www.snowdomes.com/mm5/merchant.mvc

http://www.nationalartcraft.com/subcategory.asp?gid=6&cid=37&scid=54

They’re a favorite for the holidays, but are perfect for other occasions too! One creative teacher made snow globes for each student as an “end of school year” gift, using digital photos taken during the year of the student and one of their friends together. What a great way to preserve memories! We’ve included links to two web sites that offer ready-made kits.

This article is taken with permission from www.autismdigest.com, where readers can go online and, by signing in, can access free copies of the magazine’s eGuide, which is packed full of more information on holidays and gift giving for children on the spectrum.

Why you don't drive when your wife asks you not to

2010-12-16T18:10:00.001-08:00

We live in NC, and every time we get a tiny bit of snow everyone panics. And by snow, I mean less than an inch. School was canceled, and the weatherman made it clear that while we were not going to get much snow at all, it would be freezing rain all day. Every inch of the great outdoors is covered with a thick layer of ice. Rocket's pasture is so slippery I can't even walk through it without falling. Rocket has to stay in the stall, because he would break a leg if I let him out.

Anyway, I asked my husband not to drive to work this morning. He didn't NEED to go, he wanted to get some paperwork done. But he went, early. Apparently driving the usual speed on I40 (right before it closed and cops kept people from driving on it), he did not believe that there was ice. Until the cars ahead hit their brakes. He tried to hit his, but thanks to the ice, he rammed into the back of another vehicle. Big pickup truck. Thankfully neither of them were hurt, and the truck didn't get a scratch. MY precious blue, shiny, new Kia (my first NEW car) is not ok. The whole front end is smashed in. The hood will have to be cut apart to even look under it, and the passenger door no longer opens at all. Lots of bad noises and burning smells coming from it. On the plus side, we only have to pay our $500 deductible, I think it will be well over $500 and State Farm covers that... but my poor little car!!!

Moral of the story: When the weatherman, the school district, the radio, and your wife say it's going to be VERY icy and you should not drive early in the morning unless absolutely necessary, you don't drive and wreck your wife's beloved car!

A flurry of tentacles

2010-12-14T10:51:00.000-08:00

I don’t know that I have ever actually discussed Jaymes’ jellyfish obsession on the blog. I’m sure I’ve mentioned it when he’s lost one, or something like that, but it’s about time I shared his love of the Jellyfish.
It all started about a year ago. Jaymes’ loved toy of choice had been his pink blanket, Pinky. Poor Pinky now sits, soiled and alone, in the corner of his room. I had a Goochy the Jellyfish Beanie Baby I got at a yard sale. I thought it was cool looking, mostly because I like things with tentacles, and the jellyfish are also all made from this cool tye dye soft material. They’re all unique because of the nature of the tye dye, and I just love them. My jellyfish used to sit up at Jaymes’ eye level on a knickknack shelf. He never had so much as looked at it, but one day he snatched it off the shelf and told me (very seriously) “this is Jaymes’ jellyfish. He name Jelly.” Ok then…
So Jelly took over the role of beloved blanket, Pinky. Unfortunately, Beanie Babies are not built tough enough for kids like Jaymes. The first issue I noticed was that the light colored tye dye very quickly turns a dingy grey color. Not a huge deal, Jaymes isn’t bothered by that. The trouble is that after a few months, the tentacles lose their ability to tolerate the constant yanking, twisting, and pulling that Jaymes puts that poor jellyfish through. So, I started to scour Ebay for more Jellies. I keep at least one, usually a couple, on hand and hidden around the house.
Every time Jaymes is offered a new Jelly, his little face lights up and he runs toward it with glee, often ramming into whatever might be in his way. His eagerness to get ahold of that shiny new Jelly makes him completely oblivious to anything that he plows into. For the next day or so, he’ll run up to anyone who so much as breathes his direction. He will hold the new Jelly up about an inch from their face and loudly announce “this is Jaymeses jellyfish!”
Recently he’s started being a little TOO rough with his Jellies. Yanking off tentacles on purpose, just to scream and cry “Jellyfish hurted the tentacle, Jelly need to see doctor. Take to the hospital” I’m not sure why he does it, probably for the same reason he begs for a candy cane, then drops it and shrieks when it shatters into a thousand sticky pieces. Who knows. I started keeping an old, filthy Jelly aside and when he rips one, he gets a nasty old one instead of a shiny new one. Seems to have worked for the most part. My car, however, looks like the site of a brutal jellyfish torture and execution. Tentacles everywhere. Seriously! The other day I went digging for something in my back seat and found 8, yes, 8 tentacles. It was as gruesome as a Jellyfish massacre can be! I’m not sure why I have not thrown away all those tentacles. Actually, yes I am. I have a truly sick sense of humor. Every time I get into my car and brush a Jelly tentacle off the seat or the dashboard, I crack up laughing. It’s kind of like that hilarious class picture I have from Jaymes autistic pre-K class back in Florida. A picture no one else wanted because all the kids were flailing, screaming, or doing both. Jaymes was sideways, screaming as a teacher’s aide clung to him to keep him in the chair. The other teachers aide was holding a classmate in his chair, and the teacher looked ready to either jump off a cliff or go totally insane. I love that photo, it makes me laugh like a lunatic every time I see it. So I suppose the Jellyfish thing is just another one of the things I love about Jaymes. Nobody makes me laugh like he does.
Last week Jaymes had an appointment with the neurologist, and of course Jelly tagged along. Jaymes ignored the student doc who was in there first asking questions and looking Jaymes over. But when the big important Neurologist walked into the exam room, Jaymes darted over to her, sidled up close, and thrust Jelly into her face. He looked very solemn, and told the doctor (in a very purposeful voice) “Jelly broken the tennacle. Jelly need brain doctor to fix tennacle. You fix Jelly.”
I have to give the doctor serious applause, because in my experience, Neurologists don’t tend to have a great bedside manner. She looked the Jelly over, used her stethoscope on him, and then sadly shook her head and told Jaymes that Jelly had to have his tentacle amputated, but that he would be fine. I’m a little shocked Jaymes actually believed her, but who am I to judge? It satisfied him.
I’ve got to put in a plug for the wonderful Jellyfish vendor I get all of Jaymes’ replacement Jellies from. His user name on Ebay is Henry’s Hobbies, and he sells a ton of Beanies of all types. He has been SO wonderful to work with and is really friendly. You don’t get that often anymore in Ebay sellers, what with most being huge stores that can afford to brush off customers. As long as they have Jellies for sale, I’ll never buy another from anyone else. They ship super fast, they leave feedback, and they are a pleasure to deal with. If you want to buy some beanies or other collectible stuff, click here for his list of items for sale. I cannot recommend him highly enough!
So, in a (very long, very rambling) nutshell, that’s the history of the Jelly.

Ps. Here’s to hoping the person I’ve been talking to on Ebay is actually “Henry” of Henry’s Hobbies. Otherwise I might be calling a she, a he or vice versa. LOL

Enjoy the video!

Sweet holiday treat: the bane of my existence!

2010-12-11T07:21:00.000-08:00

Christmas is nearly upon us, and the insanity of the holidays at our house has certainly set in! I have been kept very busy between protecting the Christmas tree from Jaymes, removing candy canes from his hair, and wiping red and green paint off his (fairly) new shoes. Thankfully most of our Christmas shopping is done, the hardest part was the kids and short of buying a couple new items, they’re good to go.
I really wanted to get a new (fake) tree, and we were set to get one at Target that was on a fantastic sale… But turned out they sold out, and the red shirted gentleman refused to sell the floor model. Oh well. I was kind of bummed out about it, but we put up our sad little crooked 4 ft tree and it looks really pretty all lit up with rainbow lights and our ornaments. We use the glass ornaments that my grandma gave us (RIP grandma) a couple years ago, some unbreakable plastic balls, and our collection of “special” ornaments we get each year. Our family tradition is to go out and buy one ornament each that goes into the special collection. Every year it grows, and the pretty ornaments really bring back memories. This year I got a red glittery Moravian star, Jason got a sparkly silver reindeer, Jaymes got a purple hippo on skis, and Sierra got a Christmas Dora the Explorer ornament. Our collection, grown over the 6 years Jason and I have been married includes a horse, a dinosaur, a princess tiara, a cat wearing a santa hat, a bright silver metal reindeer with blue gems in its antlers… And the list goes on. Also included are the ornaments Jaymes makes each year at school- ornaments that look lame to others but totally fill me with pride. There’s a snowman made of dried glue and markers, a pilgrim (I don’t know why, not very Christmassy!), a reindeer, and something I’m not sure what it is.
I’ve always liked putting candy canes on the tree too, my mom always did that and it really does look pretty. But with Jaymes, I really wish we never had a single candy cane in the house. Candy canes are the bane of my existence. And of course he comes home from EVERYWHERE with the cursed things! School gives them out, therapies give them out, neighbors give them out, family gives them out. Even the lady at Walmart gives them away, and I accept them lest she think I’m a cruel, heartless parent who denies her children any sugary enjoyment.
Candy canes are tasty, I love them. As a kid I’d suck on the end until it became a point sharp enough to murder someone with. All my friends did this too, so I’m assuming it’s normal kid candy cane behavior and not some sign that I will one day go insane and start a gruesome candy cane massacre.
Jaymes does several aggravating things with these festive treats. His favorite candy cane activity is to beg one from me, then drop it on the floor from whatever height he can manage. When it hits the ground and splits into a billion and one pieces, Jaymes commences weeping and begging for another. If given another, he repeats the process. So I only give them to him outside, if at all. I’ve long lost pity for him, I mean, how bad can you feel for someone who asks for something then throws it on purpose?!
Another thing he does with his candy canes is to slurp on one until it is a little twig of stick red mess, then go into his spit swiping habit. As he wipes the saliva across his face, he is also wiping sugary, sticky, minty candiness across his face. We have 2 dogs, one is a yellow lab and the other is a long haired black mutt. No matter how well I clean, dog hair is always present. It’s in the corners, it’s on our clothes, and it hangs in the air like a yellow and black fog. And what does hair do, in the presence of a slimy, wet, sticky face? You guessed it- it sticks. So not only are Jaymes hands and face slimy and sticky from the combination of spit and candy, they’re also dog hair covered. Every time he eats a candy cane, I go from being the parent of a little boy to being the parent of a slobbering, mint scented werewolf. But I still give them to him at least a few times each year. Maybe I’m a masochist.

Black Friday Madness Recap

2010-12-06T19:38:00.001-08:00

Black Friday is a tradition my husband got me into. Actually, prior to marrying him, I’d never even heard of it. In general, the idea of waking up in the middle of the night to stand in line out in the cold with a bunch of cranky, sleepy people intent on pummeling everyone else in an effort to grab that $5 DVD really doesn’t sound that enticing. Add to that the fact that all those people have recently eaten a very large Thanksgiving meal, and thus are experiencing nausea, flatulence, diarrhea or any combination of those- Yuck. But once Jason got me into it, it became an addiction.
This year, my mother in law was visiting us. While that made for somewhat stressful holiday, it was also a blessing in that we could leave the kids at home. They actually really like going in their jammies and their baggies of cereal, but as Jaymes gets older, I can’t see him handling it too well.
Anyway, this year Walmart decided to do three time periods for different Black Friday sale items, rather than the customary 5-6am sale. The first sale began at 12:01am, then the others I’m not sure on since I only cared about the 12:01 items. We decided that it would be stupid to go to sleep, it would be more painful to sleep a few hours and get all warm and comfy then have to get up. Plus, we didn’t know whether people would grab everything beforehand like they usually do. So we headed off to Wallyworld at 9:30.
Good thing we did. They had pallets stacked all over the store of the special door buster items. They were plastic wrapped, but only around the sides. You could reach in and grab whatever you wanted. There were signs that said “these items will not ring up at the register until 12:01.” We asked a nearby employee if we could grab what we wanted and hang around till midnight. He looked at us like we were nutty, but said “sure, have at it.” There were a few people already walking around with their carts full of those items. We went around and grabbed the stuff for the kids (and my $10 belgian waffle maker) and wandered around. As the night wore on, Walmart employees were sent to guard the pallets of stuff, even though the earlier guy had said they didn’t care if people grabbed things. There were a couple of older ladies who were downright vicious about protecting the discount Tupperware they were stationed in front of!
Having already collected the things we wanted, we kind of hung around the DVD area. They’d set up big cardboard DVD shelves for the $5 DVD and BluRays, wrapped up in black plastic wrap. People lurking amongst the shelves started to pull the plastic just enough to stretch it down and see what was inside, then they got bold enough to punch holes in it with their fingers right in front of the employee guarding them. Now, he didn’t much care either. He told us that he had told someone to stop ripping open the boxes, and they actually got very threatening. He told us that he didn’t care- it wasn’t worth getting hurt over, or losing his job. I agree. I’m not sure what gets into people that they can get violent over shopping.
Right around 11pm, fellow shoppers started whispering about cops in the store. We ignored it until all of a sudden, in the aisle next to us; we heard the cop’s voice. He ordered whoever was in that aisle to put back all the stuff they had gotten from the pallets and to leave the premises and not come back. At that point, people all around us started walking as fast as they could toward different areas of the store. We found ourselves hidden back in the liquor section of the store, hidden because that area is actually a smaller closed off area from the rest of the store. Obviously, right or wrong, I was NOT going to lose out on my kids Xmas gifts. Especially after waiting as long as we had been. We held our breath everytime we heard the cop’s voice or heard an employee with jingly keys coming our direction.
Thankfully, we were able to hide out until midnight, then bought our stuff and headed out without much fuss. When we got home, we couldn’t decide what to do as far as sleep. Was there much point to getting 2 hours of sleep, or should we just go get in line at Target right away? I wanted several things for Jaymes, and for myself. I wanted to get Jaymes a portable DVD player for at appointments, and of course the electronics are the harder to get items. So off we went, to Target. I had changed into pajama pants for comfort, and wore my coat. Jason, being insane, went in his trademark t shirt and shorts. It was COLD. And we sat in line from 1am to 4am. We got a good spot in line, but still were way back from the entrance of the store. Glad we went when we did, however. The people who showed up at the last minute were at least a 10 minute walk away. We couldn’t even see the end of the line. I was freezing from the beginning and was wishing for a blanket. Jason said he was fine, but he was curling up into a ball, not unlike a threatened armadillo. At about 3am, with an hour to go, it started raining. On the plus side, the people in front and behind us had huge umbrellas. Good for me, being very short. Not so good for Jason. I was covered for the most part, he just kept getting whacked in the forehead or in the back of the head.
The store eventually send employees down the line to tell us to be safe, not trample anyone, and that there would be a police car at the entrance so no one would cut in front of the line in the melee. As they opened the store, it was like a buffalo stampede. Jason and I parted ways to get what we wanted. I felt a bit like I was being pulled along in the river of bargain hunters. It was a little unnerving. I did, however, emerge triumphant, clutching Jaymes’ DVD player. I also found a bunch of board games for $3 each, which will hopefully get the kids playing cooperatively. Got my fluffy red and white blanket too. And my pink and purple Sherpa hoodies. Those were $10 each, but it turned out that I got one for $1 due to a cashier error. Hooray! I saw the same hoodies at Tractor Supply for $49 each! I loooooove them.
By the time we stumbled into the house, I was only conscious enough to stagger to the couch and cover myself with a blanket. Didn’t even take off my shoes. Jason stayed up, because it was time for him to wake his mom and her boyfriend up to go do their bargain shopping. He did not end up sleeping at all. Poor guy. Apparently he got to witness the not so lovely sight of his mother going psycho on the poor staff of several stores. Glad I wasn’t there, I don’t tolerate treating people in retail like crap. Been there, done that. It doesn’t pay enough to be worth being screamed at for something you can’t even fix, and didn’t cause.
I got about three hours of sleep. Technically I should have only gotten two hours, because at that point both kids woke up and did their thing around me. I was tired enough to ignore Jaymes’ obsessive throat clearing and Sierra’s cries of “wake up, mommy!” I was not, however, tired enough to withstand the horrific smell of Jaymes in the morning for very long. The boy tends to have very potent smells coming from his diaper first thing in the morning, and it was a relief to get up and change said diaper before the fumes killed us all.
It was an exhausting, cold, stressful night… But hey, I got everything we needed for the kids, and as I type this, I’ve got a belly full of Belgian waffles and a cozy new blanket around my shoulders. I came, I shopped, I conquered!

Book review: How to Teach Life Skills to Kids with Autism or Asperger's

2010-12-06T14:22:00.000-08:00

I have a ton of posts I want to write, and will be working on slowly. There was so much blog fodder during the Thanksgiving holiday. Everything from Black Friday shopping to hiding in the liquor section at Walmart, to watching a fruit fight (yes, you read that correctly) in the produce section of Walmart the other night. So many things to write about! But first, a new book review. I just finished How to Teach Life Skills to Kids with Autism or Asperger’s, written by Jennifer McIlwee Myers, with a foreword by Temple Grandin.

I will admit I was not entirely sure I’d enjoy this book, because I normally steer clear of “How To” type books. Also, I know very little about Asperger’s, since I have a Jaymes. I’ve never read anything like this except books about the more “classical autism.”

As soon as I started reading, I was hooked. Jennifer writes in such a way that it feels like you’re sitting in a room having a conversation with her over coffee. Her down to earth style of writing makes for a really relaxing and enjoyable read. I will also admit that I understood just about every little side “geek note” included!

The book is, for the most part, common sense. What makes it special is the fact that she is relating the information from a perspective that many of us don’t get- that of an adult diagnosed with Asperger’s. Things I already thought I understood ended up looking a lot different when seen through Jennifer’s “eyes.” Reading through the many little stories and personal anecdotes, I found myself getting excited because I was rethinking things I’ve learned over the last few years; and I felt really motivated to try out some of the ideas put forth in the book.

I most enjoyed the personal stories about the author’s parents and the various ways they taught their children life skills that other kids seem to just pick up on their own. The most important one (in my opinion, obviously) was the story about Jennifer’s mother and her method of teaching her younger son to function in a shopping setting. The process at first seemed really excessive and repetitive, like it would be SO much simpler for the mother to just save herself the work and buy her son’s boots herself. But the lesson the author was trying to share is that while it may be easier/faster/cleaner/less aggravating to just do things for our loved ones with an ASD, it is so important to let them do it, lest they become adults who are unable to do anything for themselves. I admit that this is something I have been guilty of many times, and reading it the way it was set before me in the book inspired me to drop the rushing, frustrated attitude I’ve been known to have. It can be really hard for me to sit and watch Jaymes struggle to do something that I could do for him in a tenth of the time he takes, but I get that it’s important. It’s not just about Jaymes getting his shoes on. It’s about Jaymes being set up to succeed and to have at least the basic self care skills to help him as he grows up.

The second half of the book takes many specific questions and gives information and advice on how to teach those particular skills. Included are questions from “ how on earth do I get my child to exercise?” to topics like getting your child to sleep, wake up on time, study skills, and accepting that mistakes are going to happen, and that they are necessary. Also included is a section called “Understanding Cognitive Behavioral Therapy Concepts, which interested me greatly because my husband uses these concepts daily in his job.

I enjoyed this book immensely. Not only was it NOT at all dull or “preachy,” but it gave me a new outlook on many topics I’d long stopped thinking about. Between the humor, the information, and the personable writing style, it’s definitely a keeper. I really recommend it to anyone who wants to learn more about ASDs. Even those who don’t know anyone with autism or Asperger’s. In fact, I wish books like this were required reading in high school or college courses. It would dish out a dose of information that would boost society’s acceptance, tolerance, and understanding of children and adults on the spectrum.

The obligatory Thanksgiving post

2010-11-24T19:20:00.000-08:00

Every year I like to force myself to look past all the stupid little stresses in my life and think about the things that I am grateful for. Sometimes that's hard to do, especially when being licked by an almost seven year old, while running back and forth from the bathroom puking as a result of last night's birthday chicken wings. But, I will now overlook the extreme nausea and licking to stop being an ungrateful cretin.

I am so grateful for Jaymes and Sierra. Jaymes has taught me so much, sparked so much interesting conversation, driven me to grow a spine (slowly, vertebra by vertebra), found me some awesome friends, and kept me on my toes. In the nearly seven years he's been around, Jaymes has totally changed who I am and how I function in life. For years, I struggled horribly with being shy and spineless. There was a point in time when I could not go into stores alone, I could not talk on the phone, I could not cross a street by myself if cars were stopped and I thought they were looking at me. While I still battle my chicken-like quirks, I have learned to suck up and do things because I have to. I've learned to fight like a monkey on steroids (chasing an alligator with a mouthful of bananas) for what Jaymes needs.

Sierra has been my little buddy, my little helper, and the source of some much needed "normalcy." It is so cool to have a real conversation with a four year old. When Jaymes was four, he didn't even babble. She amazes me every day with the things she learns. She picks up things in minutes that we've struggled to teach Jaymes over years. She helps me around the house, and she tolerates my unique personality. She is willing to play zombies with me, staggering around croaking out "braiiiiiiinnsssss!"

I am grateful for my friends, most of whom I met through my awesome riding buddy, Dianne. Thanks to Dianne, I have the most amazing bunch of horsie friends and I've gotten to take part in lots of hunter paces at Yadkin Valley Hounds. I have had a LOT of fun in the last year or two, finally getting to really ride and really get away from the boring roadways I'm stuck with since I do not have a trailer to go places.

All my friends are awesome. They're all here for me. I can call and rant, or whine, or made bizarre jokes and I know I won't be judged. I can dress my pony up in a Santa hat, Xmas lights, jinglebells, and a red bow in his tail and whike I will certainly be laughed at, everybody accepts it because they know it makes me happy.

I am grateful for my precious pony, Rocket, who has given me back my confidence and gives me regular "therapy" in the form of hugs, cookie theft, trail rides, and blue ribbons. I love that he is rock solid, that he will not do stupid stuff on the trail or on the roads. He watches out for me, and he is so careful. I can trust him, even if something scares me (like steep, muddy downhill treks), because I know he is keeping me safe.

I'm grateful for my family, even though some of them have some crazy drama going on in their lives, like my poor sister.

I am grateful for the opportunities that I've gotten through this blog, all the people I've "met" and all the great books and products I have gotten to check out and review.

And last, but definitely not least, I am grateful to all of you readers. It's really cool to know that at least a few people actually care what I have to say, and all your comments and emails really brighten up each day!

I hope you all have a fantastic, delicious, non-vomiting Thanksgiving. Ok, mostly the non-vomiting part was for me, but the rest of it still stands!

Time for the happy dance!

2010-11-18T08:25:00.000-08:00

Jaymes is doing really, really well in general. I love it. Yesterday we spent our afternoon making Jello Jigglers until it was time to get Sierra from pre-school. Jaymes poured the water into the bowl, pushed the microwave buttons, and when the water was hot enough, he opened all the Jello packets and poured them in himself. Then he stirred. He did most of it by himself. I poured it into the dish to go in the fridge and solidify, and Jaymes held the fridge door open for me. He did a great job, and the Jigglers are really tasty.

Jaymes has been talking, more and more each day. Not just talking, but using long strings of words. Last night he really impressed me at dinner. He'd scarfed down his entire dinner, and upon seeing there was no more food, turned around and asked me "may have some chips please?"

I was floored. He is so smart. I did not think he could ask so politely for something- especially without being prompted.

Jaymes is in the Christmas spirit, for sure. Yesterday he took his rainbow lights out to his little play house in the back yard, grabbed an extension cord, and strung the lights along his roof like any home owner would. He did a good job.

He is loving his personal assistant worker, when the guy pulls up Jaymes goes flying out of the house with a loud cry of "MR. JAYYYYY! HIIIII!" good to know they get along so well!

Anyway, I'm pressed for time today, but wanted to share how positive I'm feeling about Jaymes lately.

Christmas time is here...

2010-11-11T08:20:00.000-08:00

In Jaymes' mind, anyway. The stores, namely Jaymes' beloved Target, put out their Christmas stuff the day after Halloween. On one hand, I'm glad the Halloween stuff is gone, because Jaymes was obsessed with that section to the point of it being a nightmare to take him there. He'd desperately try to bolt toward the section with the lights. They had pumpkin lights, spiders, skulls, and eyes. I think maybe bats too. I took pity on Jaymes, not once, but twice and stupidly bought him a set of spider lights, then a set of the pumpkin ones. The spiders lasted about a week before they stopped working. He still has them strung up in the back yard, doesn't care that they no longer work. The pumpkins lasted a few days. Like, maybe three. Then one day I found them, all the pumpkins yanked off and the light bulbs yanked and put into one of the empty plastic pumpkin shells. Apparently he likes to take things apart. No more lights.

Christmas presents a similar problem. The stores have large sections devoted entirely to Christmas trees and decorations. It's like taking a dieter to a bakery. He loves Christmas so much. The lights make him happy, the music makes him happy, he adores Santa, and he knows he'll get presents.

Our last trip to Target was an interesting one. Jaymes was fine until he saw the Christmas section. Then he bolted, and I chased after him, grabbing first one, then another delicate ornament and praying we didn't break anything. Finally got him calmed down enough to look around, with minimal grabbing and lots of great talking, so we looked at the lit up reindeer and the trees. Jaymes likes the tallest trees, with rainbow lights. He has made this incredibly clear. And just in case I forget, he's always happy to remind me.

Soon I guess we'll put up the rainbow lights out on our fence. Seeing those lights really makes Jaymes' day. As a result, we kept them up last year well into March. I always feel guilty taking them down.

Jaymes has actually been doing really well. He is not hitting or pinching any more, the worst he'll do is "sting" someone really hard with his jellyfish. I much prefer this! While his behavior and speech have been really improving, he seems like he's developing more and more of those little autistic quirks. Some of them are a little aggravating, but tolerable, like the weird noises. He sounds like a pug with a head cold, it's this combination of throat clearing and snuffling through his nose. The random public squeals and squeaks continue, not a big fan of those, and people stare at us like we're pushing a komodo dragon around in the grocery cart, though I've never been too bugged by that.

The troublesome stuff, however, is definitely a problem. Spit related trouble. Yuck. He's always done the spit wiping (spit on hand, wipe it across face) to some degree, and that portion of it has not been bad at all in a long time. But now there are new things, and they are definitely not socially acceptable. He'll collect up saliva in his mouth, then when someone (like the speech therapist) asks something of him, he'll spit it out into an enormous puddle on the table, floor, or book being read to him. He also tries to lick random people. I'm not squeamish at all, but even I don't really like having giant, hot Jaymes tongue slurping my arm. Yuck! I know the therapists and random people in public do not want to be slurped, so this one we're dealing with pretty strictly. Trying to make him understand that spit stays in his mouth, and not on the floor. We've been making him wipe it up, as suggested by a couple different therapists, but he does not seem to mind that at all, so maybe I need to think up a better consequence for spitting. I'm thinking it might work to use Jelly the jellyfish for this. Just like Jaymes stopped hitting and started using Jelly to "sting" (it doesn't hurt! Hooray!), I wonder if I can talk him into not licking people, but letting Jelly lick them. I know that is kind of adding another behavior, and that people are not going to want to have his Jelly rubbed on them, but it's at least better than being licked, right?

Not much planned for the week... Next Thursday we'll be taking Rocket up to the school for Science Night, should be fun. I've always wanted to volunteer, but can't in the classroom and have always felt really uncomfortable thinking about helping out in the office or something, because I feel like I'm always complaining to the school folks about things, and you all know about our IEP meetings... I don't want to go in and help if it's going to be awkward. I'm probably seriously over thinking this one, the office gals are really friendly to me, and they're very good conversation! But, I'm comfortable volunteering this way, and it'll be neat to let kids who have never seen a real horse in person get some petting and treat feeding in. I firmly believe that everyone can benefit from horse time! It's better than therapy.

My birthday is on the 23rd, and I'll be celebrating it by taking Jaymes to Duke for his genetics appt (yay, joy, woo), driving 2 hours each way, and then my mother in law will be coming that evening. Will be an interesting birthday. I'm starting to think I should just stop acknowledging bithdays, and stay 25 for the rest of my life. Anyway, it'll be fun having Jason's mom visit. While she drives me nuts some of the time, she's actually pretty cool. So we'll do our Thanksgiving thing, then do the Black Friday shopping for gifts (she lets Jason and I just pick out our Xmas gifts) for the kiddos for Christmas. They're only staying a couple days, I guess. We're planning to get that IXL game system thing for Jaymes for Christmas, he plays with the demo one at Target all the time and loves it, so it should be a hit.

Bullying

2010-11-01T19:36:00.000-07:00

I'm sure most of you have already seen the article and video about the "crazy bus dad," but I wanted to share my feelings on the situation. If you don't have a clue what I'm talking about, click here for the article and video and then return to my post.

This kind of situation is one we can all relate to, especially those of us with special needs children. We've all gone through bad situations where bullies at school (or out in the world) target our kiddos because they're different, and because they are easy targets. I doubt many of us have stormed a school bus and blasted kids and bus driver the way this gentleman did... But I know that at least I have certainly wanted to.

There is nothing so heart wrenching, frustrating, and infuriating as knowing your child is being bullied because he is different, and knowing that school staff are aware of the issue and yet nothing is done to stop it. We have been lucky thus far, that due to Jaymes' age the bullying comes in the form of "haha, you wear diapers," or "what's wrong with you? Why don't you talk to me? Why is your blanket pink?" Younger kid bullying isn't as overtly cruel as with middle and high school bullying... But it still makes me see red. Jaymes is lucky, in a way, that he doesn't really comprehend (and even if he did, he wouldn't pay attention long enough to get the message!) the things people around him say. He just wanders off, happy as always. It breaks my heart though, and I really worry about school and bus time- times with limited adult attention because the kids greatly outnumber the adults and it's simply impossible for staff to catch every little comment. At least the child in question in the article (a middle school girl with CP) was able to tell her dad about the bullying. Jaymes can't tell me if something is happening to him, if he's being bullied or teased, or even (God forbid) an adult touched him inappropriately or something.

So in my own way, I really sympathize. I'm not sure that people without a special needs kiddo can fully appreciate why the dad's reaction was the way it was. I understand it, and the things he's said are things I've said silently in my head a couple of times. I don't approve of his actions, but I get it and I can't blame him.

I hope he scared the piss out of those evil little bullies, I really do. I don't expect that it taught them a damn thing, and I'm sure they will continue to prey on those kids who are easiest to target. It would be great if this whole situation will alert the parents to the fact that they need to re-think their parenting and teach the little bastards some decency. Again, I wouldn't count on it, but maybe.

I think those bullies deserved exactly what they got (and more, IMO), and wonder how it felt to them to be bullied and made to feel helpless, and if they'll learn a thing. The thing that I hate about this is that in the end, the bullies come out looking like victims. Unfortunately, dad screwed himself by storming onto the bus and screaming obscenities in front of minors, not only the bullies but innocent kids who were just riding the bus on home.

Again, I understand why he did what he did. I feel terrible for him and for his daughter. It's really terrible. But regardless of why, it is never ever ok for an adult to get on a school bus full of children, curse at them, and threaten them with physical violence. It is just not ok. There are alternatives. He could have raised an almighty fuss at the school. He could have spent a few days going up and chain of command, until he got to someone who would seriously fix the problem. He could have pulled the child out of the school and either waited for things to settle and resolve or find another school. He could even have contacted the media to make the community aware that at such-and-such school, staff and bus drivers are allowing bullying of a disabled child. There are legal, effective ways to fight back. All he accomplished in doing what he did (as much as the bullies deserved to get their asses handed to them) is making the bullies look like the bullied, and scaring the daylights out of a bunch of innocent kiddos sitting on their school bus. As soon as we as parents of disabled kids begin responding to things like this with anger, threats, and fury, we lose the battle.

I do hope the transportation department for the school district immediately began looking through their tapes, to see whether the bullying (and you know it was) was actually happening. The bus driver should have done something, but anyone who has been reading my blog long knows, I'm no stranger to bus driver stupidity. Remember the time the driver almost left Jaymes alone in the bus, door open, on a major road at a high school? Or the time they forgot to bring him home? Or the time the driver failed to notice (sitting directly behind her, so that she could see him in the rearview in case he caused a problem) a serious, gushing nosebleed that left puddles on him and on the bus seats, and probably the kids next to him?

I hope this father does not get jail time. His daughter needs him, and he isn't a criminal. He acted wrongly, out of rage and frustration, but all he was trying to do was protect his little girl.

I do not look forward to when Jaymes is in middle school. Not at all. I don't want to even think about the tormenting that bullies will do. I was "normal" in high school, but I was tormented mercilessly. The end of middle school and all of high school were awful for me. I remember coming home so distraught I just wanted to die. I don't ever want Jaymes (or Sierra) to feel that way.

Schools need to get with the program and stop allowing this kind of thing to happen.

(Insert tangent here, where's my soap box?"

So many of these schools (ask me how I know...) love to slap a label on our kids and stick them in a self contained classroom away from the regular education population. In separating the "normal" from the "special" children, the schools are sending a message to their students. What they need to be doing is exposing their students to kids of all abilities, and teach tolerance.

The world can be a very ugly place sometimes. My thoughts are with "crazy bus dad" and his family. I'm on their side.