Wednesday, November 25, 2009

The Obligatory Thanksgiving Thankfullness Post

Because every year, we all do it. Even when things suck royally, like they do right now. Every year something bad happens before the holidays, and this year it was Jason losing his job. However, we still have a lot to be thankful for.

I'm thankful for my kids...

Sierra is a little prodigy (in my world, anyway). She has developed this insane vocabulary in the last year, and people really can have full conversations with her. She is so clear, and she understands how to use her grammar pretty darn well, it's just weird! Currently, she likes to make mommy and daddy melt by saying that mommy/daddy/Jaymes/Echo the dog...etc is "my best fwiend." When I leave for classes on Mon and Wed, she runs to the door, waves, and says "have a good day at school mommy!" When I get home, she runs to meet me with a big hug and a loud "Mommy, I miss you!"

Jaymes is Jaymes. I love him regardless of whatever things he may or may not be doing at any given time. Right now I'm super thankful to have found an audiologist who could test Jaymes, and had the patience to outlast his uncooperative-in-the-soundproof-booth issues. I am thankful Medicaid paid for Jaymes to get hearing aids. I'm thankful that he gets to have the fun of choosing what color ear molds he wants.

I'm immensely thankful that Jaymes did realize that the hearing aids help him hear. He loves them now, and if one falls out when he's being just a little too bouncy, he runs to me and asks me to "fixit the ears." He's wearing them all day long now, even in the car. He's wonderful about it, if one gets loose or the over the ear part comes off his little ear, he immediately lets one of us know so we can fix it.

His speech is SO much clearer. And there is SO much more of it. I love listening to him talk. Today, we went to the Children's Museum in Greensboro to play, and Jaymes did so much great talking. He was able to tell me that another child was playing with the train, or that he was reading. His speech therapist has worked really hard with him on learning those "ing" action words, and I was amazed at how many actions he was able to identify as he played.

I'm thankful for my being able to go to school, finally...

It is SO nice to have adult conversation with someone other than my husband. Even math is a pleasure, because I get to be out of the house and in society. For a long time, I was stuck 100% in either the house or the pediatric therapy waiting room at Baptist.

I actually really enjoy the work, particularly the English work. I'd forgotten how good writing essays made me feel. How weird is that? Yeah, I love to write essays. Although the eight to ten page history essay due shortly is another story! I'm making excellent grades, which is a little surprising considering I was a solid C student (except in English) through high school.

Nice too, is the fact that not only do I not pay a cent for school, but I get the extra $1000 the Pell Grants pay out after tuition and books are paid for. That comes in handy for bills when the husband is unemployed.

I'm thankful for my horse...

She may be old, lame, bitchy, and lazy, but she is a cool old mare. She's gorgeous now, fat and sassy, which is SUCH a change from the way she looked when I got her. I was lucky enough to get several amazing trail rides out in Pinnacle before Lucy went lame, we even got to ride in the Yadkin!

Lucy's been on pain meds, stall rest, and having her legs wrapped for support for the last four months, and probably will not be even remotely ready to start back to work until summer. That's a little sad, but she does need hand walking, and I do too. Together, we are rehabbing ourselves back to working condition. I find that she really prefers the being lazy to actual work, surprise surprise.

I'm thankful that I finally did get to see the doctor (although her was a jerk) and got the next six months worth of pain meds (the non-narcotic variety, thank goodness) and meds for my acid reflux, which I have not been able to get my paws on in a long time. I feel much better, and much less tired. It was really exhausting to be in pain all the time and feeling sick all the time. I'm not 100% by any means, but it is SUCH an improvement! Also, all my meds are on the Walmart $4 list.

Have I mentioned how thankful I am for that list?! Walmart may be evil in many, many ways but they really did the uninsured folks like myself a HUGE favor in instituting that $4 list.

Anyway, I'm looking forward to a delicious dinner tomorrow, and trying to coerce Jaymes into eating some turkey. He loves mashed potatoes and cranberry sauce, and what meal would be complete without an added "therapy session" in the mix? I will hopefully return to this blog, triumphant, with some turkey, stuffing, and yams in Jaymes' little belly.

And I do pray that the room isn't smeared with poop in the morning, because that's just not the way to start Thanksgiving day.

Have a good one, everybody! Eat some extra turkey on Jaymes' behalf. I'm not sure I'll be able to talk him into it.

All in all, life could be worse. We don't have much money, but we have family and my sense of humor remains intact. If you can't laugh at all the crap life throws at you, it would be altogether too depressing.

Friday, November 20, 2009

I do not like green eggs and ham (the DVD). I do not like it, Sam I Am.

I do not like green eggs and ham. I do not like it here or there, I do not like it anywhere. I do not like it in the rain, or on a train. It pains my brain. I've seen it here, I've seen it there. I think I've seen it everywhere. In the living room, at therapy, on my laptop, you name it. I cannot watch it anymore, it's been watched so much, it is a bore.

However, Jaymes does love green eggs and ham. He does, he loves it, Sam I Am. And he will watch it here or there, he will watch it anywhere. He will watch it in a house, he will watch it with a mouse. He will watch it in a box, and he will watch it with a fox. He will watch it in the car, and he will watch it in a tree, it is so good, so good you see. So he will watch it in the dark, and he will watch it in the rain, and he will watch it on a plane. He will watch it on a boat, he will watch it on a goat. Jaymes sure does love green eggs and ham, and bored, so bored, so bored I am.

Jaymes is obsessed with Green Eggs and Ham. I curse you, Dr. Seuss. Although it is incredibly cute. So I guess it's ok. Ever since he got his hearing aids, watching green eggs and ham has been hilarious for both of us. Jaymes goes along with the words. He actually gets out whole rhyming sentences, it's really neat. He also adjusts his voice for each character. Sam I am has a happy voice, and the other guy (who does not like green eggs and ham) has a loud, angry voice. Jaymes does it perfectly, and he does the part of the angry guy with passion. It's really funny to listen to him. He takes it very seriously.

He has also begun to follow along with the show in his book. I wonder if this would be a good way to start teaching him to read certain words in print, since he knows them and loves them. I guess that might not be genuine "reading" though, if he's got it all memorized. I don't know.

I love the hearing aids. I love how much more Jaymes is talking, I love the clarity of the words, and the volume control. I love that his voice has emotion now, where it has always been fairly monotone. Jaymes loves the hearing aids. He gets upset when they come out at bedtime or bathtime, and he asks for them first thing in the morning. He comes right out of his room, asks for a popsicle like he does every morning (and never gets one!) and then says "Want ears, want ears."

I think this has been a huge success. I'm not sure the school is on board with it, but they will be in time. I have faith in the principal over at cash, she's really good. So is Jaymes teacher. They just have to get used to my way of doing things. I don't think I always ask for things correctly, I can be a little bit blunt sometimes. I have a lot of foot-in-mouth moments.

This is one of those situations where Jaymes makes us all look stupid. Everybody, myself included, was so sure Jaymes would make the whole hearing aid thing a huge fight, and that there was no way he'd keep them in... Well, he sure proved us wrong!

It's that time of year again... And refrigerator boxes and bubblewrap reign supreme.

In the past five years of gift shopping for my son, I cannot count the number of times I've thought that it would be more logical to bypass the expensive, flashy toys in favor of the boxes and wrapping that he enjoys so much more! How many fellow autism parents have developed an eye twitch after spending hundreds of dollars on high tech toys promised to develop skills that these kids are lacking, and seeing them toss the toy across the room then grab the bubble wrap and scream with delight? Fear not, however, I have finally found some toys that can compete with their packaging.

If it's fragile, it's a bad, bad, bad idea! The biggest characteristic of a good toy for kids with autism is durability. If it's not durable, it will not last long. Toys have to withstand throwing, stomping, dropping, moisture, food being mashed into them, and being left out in the rain. As cool as that Nitro Notebook laptop toy is, it's $80 badly spent in this case. Delicate electronics don't stand a chance. Porcelain dolls are dangerous. Stuffed animals often get shredded.

There are certain toys that a child gets attached to, to the point of not being able to handle being away from it. In our case, it was a stuffed horse that came from Wal Mart. By the time it had worn to pieces, Walmart had stopped selling the toy. Get something relatively generic, so it can be replaced with an identical one later down the line. It will save you a lot of heartache, headache, and you won't have to watch the child carry around the shredded, filthy remains of whatever the toy started out as.

I've yet to meet the autistic kid who did not absolutely love music playing, light flashing, noise making toys. A favorite of my son's is Playskool's toddler guitar. It's a noisy, headache inducing toy, but he has been unable to break it, and has not tired of it. Anything with lots of lights and cound will keep an autistic child interested, but after awhile the parents may ban you from giving them!

So called "fidget" items are really useful for kids with autism. Small balls with different textures offer a wide variety of tactile play, a bucket of beans is always a favorite, and small puzzles like the plastic Tangle toy or the Rubix cube are great, depending upon the age of the child. Play Dough is good for certain kids, but not so much for individuals who are sensitive to messy hands.A huge Tupperware box of dry rice and beans can provide a wonderful, affordable toy. It's messy though, so keep it outside. Also, be prepared to see hundreds of tiny bean stalks sprouting from your lawn after it rains.

Talk to the child's parents and find out what he or she is doing in therapy. Perhaps a therapy swing from Flaghouse could be a welcome addition to the home. Flaghouse also carries a variety of balls, toys, weighted blankets and vests, ball pools, climbing toys, and even bubble columns. These are all things that parents of autistic kids will get a ton of use from, and which will retain their value should the child outgrow or develop beyond the use of the item, enabling them to resell it later on to get something else. it's the gift that keeps on giving.

One product we own and love is the My Busy Kit. Not only is this collection of activities a blast for both kids and parents, but by buying one, you're supporting a small business that is giving back to the community in a big way! The kits come in a variety of types, including a My Airport Kit, My Toddler kit, and kits specifically designed for either boys or girls. The kits come with mini puzzles, stickers, word games, tactile toys, safety scissors, sewing cards... Basically a treasure trove of autism-safe fun in a very nice, reusable zipper bag.

Another product I'm a big fan of is Goosie Cards. I believe they are now selling the gift certificates for card sets at Toys R Us. Basically, you pay for whatever size card set you want, then you go online to their website and upload your own photos. Next, add your text to create a one of a kind set of flashcards geared especially toward your child's learning goals. We made a "Places to Go" set that included carda featuring the Children's Museum, school, grocery store, and a small set that showed the steps to getting there (i.e. getting into the car, fastening the seat belt). The cards are huge, sturdy, and waterproof. They are also just about indestructible. Kids think it's cool to see their picture on the cards too!

Or, you could always go old school style and just buy a huge roll of bubble wrap from the packaging store. I guarantee that will be the best loved gift at any party, autistic kids or normally developing!

Wednesday, November 18, 2009

A Repost. Survival tips for parents of special needs kids. Or any kids, for that matter.

I came across this on my own website (oh wonder of wonders) and was not sure if I'd ever blogged this one. It amused me, so here's to amusing somebody else with the same thing.

And yes, I did make two posts in one day. Where's my award?!

Tip #1: Some things never change

Remember when your son or daughter was a sweet little newborn? All that advice you got from friends and family, particularly concerning sleep, remains useful years later. Sleep when they sleep. If you're dead tired, taking a nap will recharge you and will also replenish your supply of patience. If Jaymes passes out on the couch, so do I. He's recharging for some more havoc, why shouldn't I?

Tip #2: Target agrees, different foods should not touch!

Target sells the cutest little plates that are just perfect for kids who do not like their food to touch. They are the type with little sections, and come in all kinds of cute shapes, sizes, and colors. Jaymes has a dinosaur one, a fishy, and a barn. Sierra has an owl and a heart. No fits because the mashed potatoes touched the green beans.

Tip #3: Toys that they don't see often will save you, everytime!

We have a secret stash of toys that the kids see once in a blue moon. At an appointment, a funeral, someplace they need to be quiet. It works like a charm, but be warned: You MUST keep the toys hidden and only brought out occasionally, because as soon as your child realizes it's sticking around, the toy loses it's appeal.

Tip #4: Don't hold it in...

What's your outlet? Mine is writing. When I'm at my wits end with Jaymes and want nothing more than to jump off a cliff screaming "I HATE AUTISM" I write my feelings down. I acknowledge that dark side of living with autism and I accept that I cannot and should not be positive and sunshiney about it 24/7. It's not healthy! We all have to blow off steam sometimes, holding it in will just make us go insane. So go ahead and scream into your pillow, write a grumpy rant, hop in the car and sing to your loudest music. Let it all out, and you'll soon feel that positivity returning.

Tip #5: Because I said so...

We as parents should never feel that we have to be apologetic or feel silly about things that matter for our kids. If you as a parent think your child needs to be on a GFCF diet, enforce it! don't let anyone make you feel stupid, correct them when they tell you one little bite of cookie won't hurt. It doesn't matter who is right, you're the parent and it's your call. Stand up for that.

This goes for behavior too. When I have Jaymes at Walmart, and he is doing something we do not allow (for example throwing his leg over the side of the shopping cart and dangling), I often feel self conscious about redirecting him because people hear him shriek and give me the stink eye. As hard as it is, we need to be able to look past that and just do what needs to be done. Letting Jaymes get away with thast behavior isn't going to help him any, and if he falls it'll be quite painful for him. Better to endure some nasty looks than to let a negative behavior become one that your child thinks is ok.

If you feel your child should not be vaccinated, or should be on a customized schedule rather than getting everything at once like the doctor usually does, speak up. I personally prefer to vaccinate, but for Sierra I do the staggered vacc schedule because she has in the past had a reaction (not autism causing, a physical reaction that put her in the hospital for 4 days). I have been fortunate to have only experienced pediatricians who are respectful and willing to work with parents, but from what I hear, this is not the norm.

Speak up! Tell the doctor your reasoning, and what you would like to do. Don't tell them "The vaccine mafia is trying to kill my child!", they will dismiss you as a wingnut. Be calm and rational, and stick to your guns. Don't back down. Anything can be won if you just keep to it.

Right or wrong, we are the parents, and what we say goes.

Crises of the week

Ah, it's that time again. Every now and then, you just really need a good whine. Feel free to skip over this one, though. I wouldn't blame ya. Except, there will be some positives at the end, as always. Consider that my attempt to look at the glass as half full, instead of half empty. Or broken in jagged pieces on the floor in a puddle of milk that I will inevitably step into, cut my foot, slip in the milk, and break a leg. Oh wait, we were talking positivity, weren't we?

School first. I love school, I really do. It's really nice to get human interaction. Even math is pleasant because the teacher is really a cool guy with a sense of humor on par with my own (twisted? Nah. Well...). I only actually have two classes that I "go" to. The others are online. I go to English and math on Mon and Wed. I love English, for obvious reasons. I love to write, I enjoy getting good grades in it, and I find many uses for the papers I'm writing there. Also, that teacher is pretty cool as well. Again, somewhat twisted sense of humor. Very unique math teaching lessons- priceless, in fact.

I was supposed to be whining, sorry about that. I run off on a tangent more often than not, although you all should know that by now. Read at your own risk. Uh... Talking about school. I'm getting kind of overwhelmed. All the work is piling up at a time when I have no time to myself to DO the work. I have a math test on Monday (my birthday, incidentally. Woohoo, big 24.), a 10 page history paper in a few weeks, a literary analysis paper due soon, a Powerpoint presentation (and no Powerpoint on my computer..ack...), 2 Psychology quizzes and a discussion board due today(-eyetwitch-)... ACK. Panic. Hard to concentrate on anything (hence this post being oddly rambling and disjointed) with Jason home all the time, Sierra making noise, the dogs being annoying, the cat attacking Sierra's milk, Jason yelling at the cat, Sierra yelling at the cat...

Point being, I need to get some work done. Also, my perfectionism kills me. I got several papers back today in English. One was 100, which is great, although I'm not sure that paper deserved 100. Another got a 93, and another a 92 (I think.) I really prefer 100's. Or 99's. It pains me to get anything lower, because if I'd have tried harder and proofread a little more and researched the use of the goddamned SEMICOLONS, I would have gotten the grade I wanted. I hate when I do sloppy work. I need to do better.

I emailed the school today to ask for another IEP meeting (I know, it's only been 2 weeks since the last one.. blech...) to discuss Jaymes' hearing loss, his hearing aids, and ways the school can make it easier for him to participate abd learn. They will be overjoyed, I am sure. I wish I could just be nice and pleasant and happy all the time, but the school is not taking Jaymes hearing aids seriously. Although, neither is anyone else. I seem to be the only person who thinks he needs them, and who sees a benefit. Also, I am the only person who remembers to turn them on when he wears them, and off when he takes them off. Meh. I feel like I'm always riding that poor teacher, and I feel awful about it. But given the choice between the teacher's feelings or my kid's education.. Well, what choice do I have?

I miss Jaymes. Wednesdays, I don't even see him. My meds knock me out from 10pm-9am, so Jason puts him on the bus. Then I leave at 2 and don't get home from class until after bedtime. Makes me sad not to see my little snugglepuff.

Jaymes is having a really hard time right now with separation anxiety. When I leave the house for any period of time, for any reason, Jaymes goes hysterical. He screams and cries and thrashes and is in a state of pure panic for however long it takes for me to come back. Literally, he can cry for hours. It breaks my heart to see him cry like that when I have to leave. Poor little booger, I don't know what's going on with him right now.

Sierra is being a muffinhead lately. She is being very pushy and defiant, hitting me or daddy or the dogs and spitting, biting, etc. It's really not like her. I'm hoping it's just a phase and she'll cut it out soon, she's too cute and sweet to be rotten!

Jason continues to sit at home and stress me out. He plays his games and yells at the TV. Or obsessively cleans things. Or complains about his ex-job. He needs to go back to work before I go insane.

I guess we're talking about going to Florida for Xmas. My mom offered to help with gas, so if I can find a dogsitter and a horsesitter, we may as well go. It's a good time, with Jason being home. I hate FL and do not want to go, but Jason really does and it would be nice to see my grandma and my aunt and all my FL friends. But I hate the drive, and I hate the weather. We'd be home before Jaymes' birthday, which is a big deal to me. Probably have another birthday party nobody comes to except Kristi, who is the best loyal buddy I could ask for.

My weight is bothering me a lot. I feel like a cow, I hate how I look, but I hurt too much from my horse accident to exercise much and I'm hungry all the time. And tired. I guess there isn't much point to dieting this time of year, I may as well do it after the holidays. I just hate looking at the scale and seeing that I'm 30 pounds more than I used to be. I was happy when I was 120. That was ok. I lose weight, then I gain it right back, frustrating!

Worried about the holidays and how we're going to get the kids gifts and make their Christmas good... Traditions matter a lot to me, I want my kids to have wonderful memories of really special holidays, not years when we can't pay rent, no less buy a Christmas tree.

And at this point, having accidentally hit the "post" button, I'm going to give up. My positivity for the day?

My kids are awesome. My kids are smart, and adorable, and wonderful. My dogs are friendly, but stupid. My horse is a grumpy old wench, and she and I are a great fit. We have a turkey in the freezer. It could be worse.

Tuesday, November 17, 2009

Thar be cows!

Sierra has a unique phobia (click on that link at your own risk, it's so stupid you may actually lose brain cells). We'll call it Mooaphobia. Or Bovineaphobia? She has a fear of cows. Big cows, little cows, pretend Chick-Fil-A cows. We can blame the Chick-Fil-A cow at Hanes Mall for this one.

It all started with a trip to the mall. It was a busy Sunday and the Chick-Fil-A in the food court had an employee in costume, as the much loved CFA Cow. Beloved mascot, cuddly pal. Jaymes thought he was awesome. He hugged the cow, high fived the cow, and poked the cow in the eye. Sierra came unglued.

Ever since, her fear of cows has been ridiculously ridiculous. At the fair, we went into the cow barn (that look nothing like the CFA cow, mind you), and poor Si-Si just about had a panic attack. She cried, shook, and begged me to "get me outta here! I'm 'fraid!"

So we avoid cows. We don't eat at Chick-Fil-A. But sometimes, the cow comes to us, as was the case last weekend. We went to the mall to walk around and share a pretzel, sat down in the food court, and who do you think was wandering around the tables? Yeah, the damned cow. Sierra went ridgid in her daddy's arms, started shaking, and her eyes got flying saucer huge. Poor Sierra. She couldn't eat or relax. We ended up having to leave.

And ever since that day, Sierra thinks there are cows hiding in the dark places in the house. Cows under the bed. Cows in her room. Cows in the closet. And only mommy or daddy taking a pillow to beat the cows out of the room will convince her to come into one of those "cow zones."

My kid is weird. Jaymes still loves the cow. Go figure.

In other news, Jaymes is doing great with his hearing aids. He keeps them in, has not broken them any more, and is talking up a storm. His words are clearer and he talks and talks in babble talk all the time. It's really cool.

In crappy news, hubby got laid off, so we're not very excited about the holidays. It was bad timing. Oh, and my birthday is Monday, so I'll be another year older, but sadly no wiser! I have a math test on my birthday, hooray. At least the teacher is cool. He's great conversation.

In even more news, we had another IEP meeting (the 4 hour variety, of course). Some good stuff happened, some incredibly insulting BS happened, but in general it could have been worse. Jaymes is doing well in class, so that's something.

My skinny old horse is skinny no longer! She's finally officially "rehabbed" and plump and happy. She's recovering from a tendon injury though, so no riding until maybe next summer. We'll see.

Sorry for the unexciting post, my next one will be better. Really. I swear. Yeah.

Tuesday, November 10, 2009

Defining "advocate"

So I had to write a definition essay for my English class... And it occurred to me that this would make an excellent blog post. Because, you know, I never ever use my papers as cop-out posts, now do I? Bwahahahaha. Anyway, enjoy. Don't tell me it sucks, because that will bruise my fragile ego and you'll reduce me to a sniffling, Pixie Stick devouring fool.

When the Definition Just Doesn’t Cut It

If you look up the noun “advocate” in an online dictionary, the first definition to pop up on your screen is “one that pleads the cause of another.” While it is a succinct, accurate definition, it fails to convey the emotion and dedication that lives in the heart of any parent who advocates for their special needs child. A true advocate does so much more than plead the cause. The cause is the air we breathe, the life we lead, and the ambition that fuels our devotion to our children.

One is not born an advocate. It is something that develops over time, a slow and laborious process. It begins with the obvious: the cause. In this case, a special needs child. As new parents, we look at our children with wonder and joy, never thinking about the hurdles they might encounter later in life. They’re perfect, and we’re hopeless. We’ve never done the parenting thing before, and we’re scared and inexperienced. We make mistakes, we learn from them, and we begin to build a foundation of knowledge. Sooner or later the day comes when we are presented with our challenge, be it a diagnosis of Down syndrome, autism, blindness, deafness, ADHD, cerebral palsy. We’re unprepared, even if we think we have it all figured out. We travel down the long road of medical visits, psychological evaluations, IEP meetings, therapy sessions. Again and again, we meet resistance that stands between our children and their best interests, and sometimes we compromise where we should have stood firm. Sometimes we stand firm where we should have compromised. Sometimes we pick really stupid things to make a fuss over, like whether they should be allowed to chew straws at school. Then we step back, re-evaluate, and try again and again until we get it right. We never really get it perfectly, but we keep trying anyway.

As advocates, we fight our own personality flaws. We step outside of our minds for a time, and overcome the things that would hold us back. When we walk into the school for an IEP meeting, we are confident and assertive, even when in our heads we’re terrified and uncomfortable beyond belief. We try not to show weakness, because if we do, then we run the risk of not being taken seriously by that room full of professionals with years of experience and walls covered in diplomas. So often, we’re “just parents” and we have to fight to be treated as equals in a society that doles out respect based on the letters that appear after one’s last name.

Advocates don’t give up. We accept that we won’t always get what we feel our kids need, and we compromise where we have to, but we never stop striving for the best. We don’t wallow in self pity or humiliation after a sound verbal trouncing during a meeting with a school district bigwig, instead we reflect on what could have been said to avoid that situation and learn from it. We develop thick skin and accept that there will always be people who disagree or who flat out do not care, and we realize that there is no place for hurt feelings and bruised egos if we are to help our kids achieve their goals.

An advocate never stops learning. We research everything from diets to alternative treatments. We learn about our children’s schools, their teachers, their therapists. We strive to stay informed and in regular communication with every professional in our children’s lives. We write emails, scribble notes on ripped pieces of notebook paper, leave messages with the endlessly patient front office secretary. We spend hours poring over IEPs, progress reports, therapy notes, and assessments. We learn crazy terms like “proprioception” (the awareness of movement, an important factor where autistic kids are concerned) and write out the word “otolaryngology” so many times that we no longer need spell check to get it right.

We are not infallible. We’re human. Sometimes we put our feet firmly into our mouths, sometimes we act like idiots. Sometimes we have no clue what we’re talking about. Sometimes we’re cold and demanding, or we’re meek and lacking in any kind of confidence. Sometimes we feel terribly guilty for making waves, or for getting school staff into trouble, even though we’re only asking for what the law promises our little ones. Sometimes we get mad, and wish we could strangle somebody. Some of us have been known to go so far as to cuss out a tactless physician or teacher. Sometimes we go to a meeting totally unprepared, and sometimes we’re too nervous to read the list of things we want to discuss at that meeting. Sometimes we really wish we could just sit back and be happy and nice to everyone, and hope that things will just fall into place and that everything will work itself out.

So yes, an advocate is someone that pleads the cause of another. But more than that, an advocate is someone who is devoted to their cause, who lives it and breathes it and never stops trying. You just can’t put all those things into one little definition

And for the record, this "we" I used is not me. I'm a piss poor advocate right now. I'm in those learning stages, I'll get better. But I suck right now. That's why I lean on the wonderful folks of the ECAC for advice, support, and ideas. The "we" in that essay are the parents I'm fortunate to be friends with and the professionals who make advocating for kids with disabilities their life's work, those who generously share their knowledge and experience with me.

Saturday, November 7, 2009

We have EARS

Jaymes got his hearing aids on Friday, right before yet another stress filled IEP meeting. He chose green ear molds and a blue "thingy that goes behind his ear" or whatever you're supposed to call it. He also wanted star stickers on the blue things, so that was done. I meant to mark them so I could remember which one went to which ear, because I have an awful memory, but I didn't do it and have been remembering that the one with the red dot on it is for the right ear, because it's legal to do a right on red when you're driving. And also, there is no blue light in driving, so the blue one must go on the left. Hmm, now that I've typed it, I hope that's right. Why on earth couldn't they forget the colored dots and put an L and R on each one?!

Jaymes got a ton of Stuff. He got a gift bag with an elephant puppet that Sierra immediately made her own, and a book about an elephant (coincidence? I think not!) who gets hearing aids. Jaymes likes the book. He also got the worlds most hideous carrying bag for all his hearing aid stuff. It's like 6 different vomit-like muted colors, with random buttoning flaps that serve no apparent purpose. It amuses me. It's hideous enough to stand out, so it won't get lost- which is awesome.

Anyway, the audiologists over at Forsyth Hospital/Whittaker Rehab spent forever explaining things to me that I got home and promptly forgot. Luckily, they sent me home with paperwork that repeated it all. Lots of care instructions, testing, putting in the deadly toxic batteries that I need to keep hidden from children who might devour them in a fit of suicidal curiosity...etc.

The first issue encountered was that the left earmold wasn't quite right. It's really hard to get in right, and is seems loose. The right one doesn't bother Jaymes at all, and if he takes one off it's the left- I assume because it's not quite right. We'll have a new one in 2 weeks.

The second issue is that Jaymes quickly discovered that if he tilts his head sideways and presses his ear to his shoulder, the hearing aid makes a shrill screeching sound. Jaymes likes this sound a lot. He calls it his music. I call it stimming with the hearing aid. Bad Jaymes! He doesn't do it too much at least.

He immediately took the aids out in the car. Put them back in (which is harder than it looked when the audio person did it) and he was good until the next car ride. Today was better, he only took them off twice today, both times in the car. I'm wondering if the sound of the car, the sound of Sierra talking VERY loudly next to him (incessantly, save me someone) is just too much for him and thats why he pulls them off? He never does it at home. We went to the mall today, and he was perfect and didn't touch them.

He watched Green Eggs and Ham for the billionth time today, and the difference was amazing. He actually talked along with the movie the entire time, with new words he has never said before. Full sentences. True, he was only echoing, but he must be hearing better, because he never did that before and we've watched that video so many times it's ingrained into my brain.

He doesn't mind the aids being put in, doesn't seem to be bothered by them at all. He's adjusting really well. I'm very proud of him, he has put everyone's gloomy predictions of failure (including mine, shame on me for being a pessimist) to shame. I'm very proud of him. He asked me for his "ears" this afternoon after nap time. Very cool. He's such a good little guy.

The aids survived their first real test- the playground at the mall. Running, jumping, falling, climbing, rolling around- and they stayed put. They also survived Jaymes helping me feed Lucy The Previously Emaciated But Now Obese Horse. He was easier to keep close outside, I did not have to bellow at him and make my neighbors shake their heads and dial the child abuse hotlines, he actually responded to his name from a distance. Good Jaymes. Good Jaymes' Ears.

We like the Ears. Jaymes tolerates the Ears. All in all, it's going well.

Now that I've said that, he'll probably flush them down the toilet in the morning. We shall see.

Monday, November 2, 2009

A Cop Out Post

I have a post I started writing the other day, about therapies and who should choose when it's time for discharge from therapy, however it's not done, and I had to write a paper for my English class, so here ya go. It's Jaymes and autism related, so it's not such a bad cop out I guess. Did I do good? What grade would you give me? I have all 100's on my papers in that class except for one, it's a 97 and that pains me... Pains me I tell you. Anyway, without further ado:

Our son was diagnosed with autism on November 11th, 2005. He was two months shy of his third birthday, but he had still not said his first word. Instead, he screamed and grunted or zoned out entirely and ignored the world around him. His idea of a good time was to lie on the carpet in his bedroom and stare at the ceiling fan. We went into the Early Steps office already somewhat educated about autism. I had started researching his odd behaviors, and had quickly realized that he showed nearly all the signs. He was a textbook case; it wasn't a hard diagnosis to make.

My husband and I reacted very differently to the diagnosis. I had been expecting it, and being more practical than emotional, threw myself into researching treatment options and information. I started scheduling therapy sessions with the local physical, occupational, and speech therapy centers. My husband, on the other hand, was firmly in denial. The very first time I had mentioned the possibility of autism he had laughed at me and said of course Jaymes didn't have that. He was fine. His opinion didn't really change, even with a formal diagnosis. He decided that the doctor was a quack, just looking to make more money off a late bloomer of a child and his gullible mother. In time, Jason did come to terms with the diagnosis, but that created its own set of issues.

I've read somewhere that statistics show a large percent of marriages fail due to having a special needs child, and I can understand why. Jaymes' autism did have a huge effect on our marriage. My husband and I disagreed (and still often do) on the best course of treatment, on how he should be disciplined, and about money. We fought endlessly over how Jason was supposed to keep a job if I had to take Jaymes to all these appointments. He was not even sure there was any point to the therapies, and at some times wanted me to stop them all and let Jaymes be whoever he was going to be. We fought because I could not work. No daycare center would take Jaymes, and he had 6 therapy sessions per week. Every job I had, I lost due to my excessive number of absences and sick days. Autism started the whole unravelling of our marriage.

My life began to revolve around Jaymes. I couldn't work, and he had not started school yet, so we spent all our time together. My husband worked more and more, so I barely saw him. It was at that point I really began to live and breathe autism. I read about it online every chance I got, I went to therapy sessions and autism playgroups and even the autism parents support groups. I realized that I really wasn't like most of those parents, because they all talked about autism as if it were a curse and a horrible thing, that their children were flawed and ruined as a result. Life with my son was hard on us, but I guess in my opinion Jaymes was who he was. I chose to go with that, and try and develop his skills rather than obsess over the child I never had. Being sad didn't do anything for Jaymes, so I didn't see a point to it. There were times, though, that I got too into the reading. I kind of lost sight of the child, in my eagerness to learn more about the diagnosis. It was a hard realization but one that helped me see that I needed to get off the internet and spend more of my time and energy on my kid.

When Jaymes was three, I got pregnant with my daughter, Sierra. If you think going through a pregnancy with a typical three year old to take care of is difficult, you cannot imagine going through a pregnancy with an autistic three year old. Around 25 weeks pregnant, I slipped and fell while chasing Jaymes, and broke my tailbone. The impact also apparently set off preterm labor. I was put on bed rest, with instructions not to get off the couch for anything but the bathroom. Of course with Jaymes, this was impossible and I had to be active. I went into labor again at 28 weeks. This time they had a lot of trouble stopping it, so they transferred me to a hospital an hour away that had a NICU. They needed me in bed and monitored, with an IV that ran drugs to keep labor at bay as long as possible. Obviously Jaymes couldn't stay with me at the hospital, so my husband had to take a leave of absence from his job until I was discharged. They sent me home at 30 weeks, and a few days later I again went into labor. This time they couldn't stop it and Sierra was born, weighing just around four pounds. Surprisingly she did not have any issues other than her size. I can't help but wonder, though, if my pregnancy would have gone smoothly if Jaymes had not been around.

As he got older, Jaymes developed little quirks and habits that slowly changed the way the entire family did things. We no longer used umbrellas, because he was obsessed with them and would go into tantrums that lasted hours if you took one from him. We panicked at the thought of sitting in a doctor's waiting room on a rainy day, because we knew there would be umbrellas galore. Another change involved where we went to eat out. We learned over time that Jaymes has a very hard time with small, crowded spaces. So KFC was out, because the combination of a tiny restaurant and lots of noisy customers was overwhelming for him. Instead, we went to places like CiCi's pizza. CiCi's pizza is perfect because it has a huge, open dining area and there aren't usually a ton of people there.

I think the biggest effect Jaymes' diagnosis has had on us is in how we think and react. When I see a kid in a store screaming, I no longer immediately think "wow, that kid is a little snot. Look at him having a fit." Instead, I wonder to myself if the child is special needs. Autism is one of the more difficult disorders, because it's invisible. Unless you know what you're looking for, an autistic child just seems like a horrible little brat, when in reality they are highly sensitive kids who are trying their best to function in what is often an overwhelming environment.

Jaymes taught us to stop caring what other people thought of us. I used to be so afraid that when he had a meltdown, people would look at me funny. Now I just shrug it off and keep walking, or I explain why Jaymes is doing what he's doing. He doesn't embarrass me, and I don't keep him hidden away at home. We're out every day; he is part of the family doing the same things any regular kid would have to do. He goes to the grocery store, the video store, the mall. He comes with me to the Social Security office, or to the doctor, or wherever else he needs to go. He's taught me that there is only way to really secure a place in society for people like him, and that is to involve him in every possible way.

All in all, Jaymes' autism made our family a better one. It's because of the trials and tribulations we have faced that we have grown so much stronger. I know that I've grown tremendously as a person. Doing what I needed to do for him helped me go from being an incredibly shy person who could not even make phone calls or walk into a store alone, to a mom who can sit at an IEP meeting and assertively make the decisions and push the limits to get Jaymes what he needs and what he deserves. I thank God every day for bringing the little guy into my life, and I can't imagine life without him.