Monday, April 10, 2006

Warning: long post ahead, not related to knitting at all

April is Autism Awareness Month. I've been wondering what to do on my blog for it (almost typed "to celebrate it", but that sounded totally wrong). I could give you the statistics - 1 in 166 kids is autistic, blah blah blah - but then I came across Cathy's blog and decided to copy her. Her son is autistic and she shared her story, so I'm going to do the same. I know all of my regular readers know Hayden and know he's autistic and know how cute he is, but I don't think I've ever shared our background. Here goes nothing:

Hayden was a typically developing little boy. He laughed, played, crawled and walked when other kids do. I had been working as a full-time staff accountant, but I became a stay at home mom shortly after he turned one and had dreams of doing all the fun things stay at home moms do - have playdates, go to the park at 10am on Wednesday, put him in Mother's Day Out program twice a week so he could have friends and I could ride my bike in the middle of the day. However, I started noticing around 18 months that he wasn't adding any new words to his vocabulary - in fact, some of his words had disappeared. I called the doctor and voiced my concerns, but he just said, "Oh, don't worry. Boys are late talkers." This conversation between he and I happened 3 times until his 2-year checkup. After that, the doctor said that maybe we should check into it. Our first step was going to the Vanderbilt Bill Wilkerson Center to have his hearing tested - normal. Then we had an evaluation done by the Tennessee Early Intervention Services to see if Hayden qualified for free therapy. TEIS does an overall evaluation, and if your child has at least a 25% defenciency in 2 areas (communication, gross motor skills, etc), they provide free therapy, whether it be speech, physical, or occupational. Hayden, of course, qualified. We started speech therapy when he was almost 2 1/2 years old. In TEIS' evaluation, they suggested I look into occupational therapy because of things like Hayden having an aversion to messy stuff like shaving cream, but I blew that off. Nobody really likes messy stuff, do they? Big mistake. Unfortunately, TEIS only pays for therapy until the child is 3, so after that, we were on our own. We enrolled Hayden in a preschool for kids with special needs. There were therapists there at school, so we didn't have to take him anywhere - the therapist just pulled him out of his class when it was time for him to work. This school didn't come cheap - the first year Hayden was there, we paid over $20,000. A college tuition for a 3 year old! Our insurance company wouldn't (and still won't) pay for any therapy, so needless to say, I went back to work. Nobody could figure out what was wrong with him, but everyone agreed he wasn't autistic. There were just some things that he did that autistic kids don't do. (What they were, I can't remember, because looking back on it, it was so clear that he was.) I had scheduled an evaluation to be done when he was 3 1/2, but cancelled it because a)everyone said that he wasn't autistic, and b)everyone said that even though he wasn't autistic, he'd be labeled as such, and that label would follow him throughout school and teachers would expect less of him, yada yada yada. Another big mistake. After his fourth birthday, though, I rescheduled his evaluation. Mike was out of town for a marathon, and Hayden had a particularly autistic weekend. I couldn't control him at McDonald's, he had a panic attack when I tried to take him to a classmate's birthday party, things like that. Mike wasn't happy that I was having him evaluated, but I decided to do it anyway. He came around before the evaluation, though, and we had come to accept that the diagnosis was going to be one of autism. That made the evaluation process so much easier, because our response to "Your child is autistic" was "We know." At the evaluator's suggestion, we took him out of the preschool he was in and got him into a program for autistic kids through the public school system. Through the school system Hayden gets speech and occupational therapy, and we supplement that with private autism and speech therapy. The speech therapist we work with (the best out of the many that we have worked with over the last 4 years) only works with autistic kids, so it's great. He's made a lot of progress over the last 4 years, but he still has a lot of work to do. He used to not be able to handle being around other kids; now he's in the thick of things when it's recess time. He doesn't play "with" his classmates, but he plays alongside of them, and that's the best we can ask for right now. His eye contact is not great, but we're working on that too. He's verbal, but 90% of the time his speech is not easily understandable (except for by me - after all, I am Mommy) or is straight out of a book, video, or computer game (echolalia is the technical term for that). He flaps his hands (called stimming) when he gets excited about something (last night while driving home from dinner he stimmed off of the street lights we drove by, and every day he flaps when he sees me coming to pick him up from school), and he laughs sometimes when nothing is going on. (I have a great 90-second video on my digital camera of his stimming off of the Teletubbies, but I don't know how to upload a video onto my blog.) He is learning how to have conversations, but right now all of it is memorized, so unless someone asks him a question the exact way we or his therapists ask him, he won't answer. But he is a great kid. He has no behavior problems; he loves to dance, sing, and make people laugh; he's pretty good at math; and he loves to give hugs and kisses. And he's super cute to boot. (And he's learning how to climb, Jen - we've been to the climbing gym twice since Thursday, and he really likes it!) With a lot of hard work, I hope that he'll be able to live a fairly typical life.

With all that being said, he did not get into the TRIAD camp. I got a letter today basically telling me that he's not high functioning enough to go to their camp. What a blow. I usually have a great attitude about our situation - sure it sucks, but he is a sweet, loving, fun kid, so I make the best out of what we got. Today, though, I've been crying and can't stop. (So please excuse any typos - sometimes they get lost in the tears.) Telling me that Hayden is not functioning enough to go to a camp for autistic kids makes me somewhat lose hope. Last week I posted that I was afraid that the TRIAD people thought I was this desparate, disillusioned mom - I guess they're right. Maybe I'm not seeing what others are. I'd love for Hayden to be the kid who shoots all the 3-pointers at the basketball game and becomes a hero - today that dream was shot down. I'm starting to think that I'm going to be one of those moms who everyone feels sorry for when she walks through the grocery store and her 25-year old autistic son is following her because he can't function without her. And now I have no idea what I'm going to do for the summer. I had planned on him going to TRIAD camp for his summertime therapy and going to a summer camp at a typical daycare the rest of the time. Now the therapy is gone, and because they don't think he's functioning enough to go to their camp, I don't think he's functioning enough to go to the typical daycare camp. I got a brochure for it today, and the things they say they do scare me. They go on field trips every Friday and go swimming every week. What if wanders off because he doesn't understand that he's supposed to stay with his class? (That's happened before.) Daycare workers aren't trained to work with autistic kids. And he can't swim, but he doesn't understand that he shouldn't jump off the diving board. So now I have to come up with an alternative plan. I don't know what that is right now, but I guess between now and May 23rd it'll come to me. I have to work, so something has to come along.

Cathy has some links on her blog to some great stuff, one of them being a sweet ESPN commercial. I urge you to visit her blog and check it out. I promise my next post will be a)happy, b)knitting related, and c)not so long.

16 comments:

yomama said...

Thank you for sharing that with us all. No one can really know what you're going through right now. Disappointments aren't fun, but you'll get through this. It may not be Italy, but there are some beautiful tulips in Holland.

yomama

michelleknits said...

Thank you for telling your story, as hard as it must be to tell it. I learned a lot about you, Hayden, and autism, and I think that's good for me, as for everyone who isn't directly touched by someone who is autistic. I'm also very sorry about the camp; I know how difficult that can be to change your expectations but I also want to remind you of something I'm sure you already know, just might not be thinking or mentioning right now, which is that this was the determination of one, perhaps a small group, of people and not the definitive answer on Hayden's capabilities and future. If anyone can keep the faith, I know you can, but I wanted to let you know that I'm sending you my best wishes to your whole family.

Catherine Kerth said...

i was waiting paitently all day long for this post... i wanted to hear hayden's story so badly... please imagine me giving you a huge hug!!!!! i know how you feel...it is so easy to lose hope. we are in the same boat please feel free to lean when ya need to and email me the triumphs too! didn't that commerical make you cry like a baby! sounds like our kids huh?

Jenn said...

aw, i'm so sorry he didn't get in! personally, that seems a little odd for me. not high functioning enough to go to an autistic camp which is supposed to give therapy to autistic children so they become more high functioning... anyone else see how wrong that is? but I digress..

I am 100% sure you will come up with a solution that will end up being even better than the first. in my experience, that's usually how huge disappointments end up going.

thank you for sharing your experience, too...it was really eye-opening and helped me to understand autism even more. and made me smile a lot when you talked about his stimming to lights outside and to you coming to pick him up @ school. now that's something to be happy about!!

good luck with everything and you know you have friends all around who are there for ya! (isn't this blogging world amazing?)

.♥.

Jen said...

Thanks so much for sharing. It sounds like you've had a long road, but it's full of lots of hopeful stuff. Hayden is clearly a sweet adorable kid, and you clearly are doing so much to help him along. I love that Hayden gets super excited to see you (and the teletubbies). How cute is that? For now though, please don't lose hope. I'm sure you'll find another solution for the summer.

It's great that Hayden is taking to climbing. I think it's a great physical outlet especially for kids. For now though, I'd keep him on a toprope and stay away from the bouldering for a while.

kmckiernan said...

I just clicked over here from Catherine's blog and wanted to leave a bit of warmth and support for you. Thank you for sharing your story, I feel like I've gained something inside myself from it.

spaazlicious said...

Aw man, that is more than a bummer that he didn't get in, but just because they can't take him now doesn't mean he'll never get to go. It would have been a great opportunity but maybe next year.
It really does surprise me that with numbers like this, there aren't more opportunities and more awareness--for the health insurance to not cover his therapy is just Dark Ages ignorant.

Olyvia said...

Thanks for sharing your story. I just found your blog a few weeks ago. My son, who is 6 years old, was diagnosed with high-functioning autism in January. I'm sorry that Hayden didn't get into the camp. I know how you feel. I don't know what I'm going to do with my son this summer.

Kel said...

*HUGS*

Oh, how disappointing about TRIAD! Well, perhaps this just wasn't the right year for it... (kinda like MiM for me!) Hayden is the cutest little guy ever and I'm sure there is something good in store for him in the karmic balance and all that :)

a_fastrunner said...

Stephanie- I just happened upon your blog tonight, and it is excellent. I am an occupational therapist, and about 5 years ago I lived & worked in Nashville. At that time, there was a day camp in lebanon, tn, called 'Empower Me Day Camp'. The owner was Michelle Harnsberger (also an OT). I have no idea if it is still in operation, but I worked there for a summer before I graduated from OT school, and it is excellent. I would send my own children there. Check into it if you are interested. If I find anything else out about it, I'll repost. Hope that helps.

knitncycle said...

I'm really sorry about the TRIAD camp! Hayden sounds like a wonderful boy! Please remember this is just one experience and not the total picture. Regardless of what level of functioning they say he's at, kids have so much potential and are all gifted in their own way. I'll be keeping you guys in my thoughts.

Donna said...

Longtime lurker, first time commenter just to say I really appreciated hearing Hayden's story. I have a long way to go to really understand autism, but your feelings as a mom I'm sure must be similar to what my mom must have felt with me - a little girl diagnosed with cerebral palsy shortly after birth. I think being a parent of a special child requires a unique blend of realism and "full speed ahead, damn the torpedoes" which you seem to be managing nicely, although I'm sure it seems hard. I could go on for another paragraph, but I'll sign off by flat-out begging you to post the Teletubbies video, because I'm all about the cuteness - you can upload and share it free at youtube.com

Anonymous said...

Hi Steph: Miss you! I have had to cut my work back alot and have some time if I can help with Hayden this Summer.
Ann M

Nanimal said...

I have been a lurker here for a while and as a fellow Mom I have always admired you. I cannot imagine what you are dealing with right now but you always seem to manage to peek up and look and the bright side in the end. I look forward to the post that tells us about that side. I'm channeling some good vibes out to you and your team!

sarah said...

What a precious mother you are. I just found your blog and have been going through your posts and your story really touched me. I worked daily with a young boy with Asperger's when I was in college and, while Asperger's is not quite as severe as Autism can be, I can understand a bit of what you must be going through. Thank you so much for sharing your story. Keep up hope, maybe one day he'll get to go to that camp! I'm sure another solution will present itself though so you can have some time to yourself.

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