Tuesday, December 13, 2011

That post about decisions that I've been avoiding posting

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.

Monday, November 7, 2011

Another article worth a read

“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


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.



Friday, November 4, 2011

Quick update and I'm an idiot

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.

Monday, September 12, 2011

I think I lost that sense of humor.

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.

Monday, August 1, 2011

Time to do some cooking with our kids!

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


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

Tuesday, July 26, 2011

Summertime Crazies and Camp Royall Photos

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.

Sunday, July 10, 2011

Here, have another great article!

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!

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.

Tuesday, July 5, 2011

Book review: Starting Sensory Therapy, by Bonnie Arnwine

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!

Monday, July 4, 2011

Guest post- and definitely a worthy cause!

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!

Saturday, June 18, 2011

Here's one for Fathers Day


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.


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

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