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.