Hello readers! So obviously it has been months since my last entry. Largely things have been the same. Good days, bad days. Little triumphs followed by back -sliding. We had Jake's parent/teacher conference and confirmed that he is behind academically. This is nothing we didn't know already. He only knew a few of his letters, couldn't recognize most of his numbers, knew about 12/54 sight words... So after asking since last year, during preschool, they finally decided it was time to test him for special services. Months later, they schedule our meeting to discuss/create his IEP (Individualized Education Plan). The first meeting didn't go as planned. Neither of us were prepared and I left in a haze with tears in my eyes, feeling like I had accomplished nothing. He qualified for an IEP based on "Other Health Impairment." He met some of the qualifications for an educational autism diagnosis, but apparently it was easier to classify him OHI. Whatever. Not the important part. So I mentioned it to his wonderful teacher and another meeting was scheduled for a week later. This time we were all prepared and my husband was off work and got to attend. We left with a rough draft of an IEP, stating he would get speech services twice a week for a stutter, and 30 minutes a day with the special education teacher, to work on whatever his teacher deems important at the time. He has about 8 goals that will be assessed annually.
During this time we were also waiting to go see the neuropsychologist. His psychiatrist noticed things that lead him to believe he is on the autism spectrum, like we have been saying for years. We changed his medicine because he was regressing and we weren't willing to let that happen. He had been much happier, less aggressive, more attentive, etc. and was getting back into a funk. So we went to 0.2 mg of Kapvay twice a day, 5 mg of Abilify once a day, and and changed his Focalin XR 10 mg to Vyvanse 20 mg once daily. I think he is still adjusting, it has been a couple weeks now and he still seems a little sleepy during the day. He had been having more sleep disturbances as well, so that could be part of it. But his doctor asked us to please give it a little time to adjust before we called it quits like a lot of people do. So that's what we are doing. He does seem much calmer in the afternoons, which was an issue before. He goes to bed without Melatonin still, another plus. So...anyway. We went to the neuropsychologist upon request of his psychiatrist. Geez, there are a lot of letters in those few words of that previous sentence! Met him and he was super nice; he had Legos so that won him some brownie points with Mr. Jake. Legos are currently one of his preoccupations. Set up a time to go back about a week later for testing. We wanted to check for autism spectrum disorders, an expressive/receptive language disorder and his memory skills. That was a really long day! He met first for testing, then we had an appointment with his psychiatrist and ended the day with a visit to a new child psychologist to address some skills he is lacking. While on that subject I will explain one of those areas of deficit.
Jake is lacking in the social area considerably. He wants to play with other kids, but doesn't understand the 'how to' aspect. We recently made a trip to McDonald's and he wanted to sit in the play place. Normally he would have his little brother with him to play, but on this day he was with a family member, so the only available kids were strangers. He still wanted to play with them. Logic says: You go up, introduce yourself and ask if you can play...or at least you just join them and start playing; kids are usually okay with that. However, Jake doesn't get that. He followed them around at a distance far enough to be "safe" but close enough that he felt he was participating. He never spoke to them. Never played with them. Just followed with an awkward "smile" on his face. He almost looked pained. Well, this lasted about 10 minutes and he could tell something wasn't right and abandoned that tactic. He decided instead to sit inside the giant tree and growl at the other children as they went past him to get to the slide. After 5 minutes we couldn't take it and asked him if was okay to leave and he quickly got his shoes and we left. If he had been having fun he wouldn't have wanted to leave. This isn't an isolated incident. He rarely tells me anything about his school day. With some prying I can usually figure out what he had for lunch, if he ate breakfast, and if he or anyone else got into trouble. That's it. One day he came home and was obviously upset. I'm pretty sure we had a meltdown before we left the parking lot of the school. Screaming, crying, throwing of his shoe for no apparent reason. We got home and I begged him to tell me what was wrong and he blurts out, amidst tears, "NOBODY WILL PLAY WITH ME AT RECESS!" So that was the cause of the meltdown that day. From what he says I picture his recess going something like this: He finds a random little girl or two, because he and little boys seem to have more struggles playing, and he chases them. All recess long....he runs and chases them. He said sometimes he tries to get them to chase him but they don't. I have suggested the swings. Nope. Slide? Nope. Maybe a ball? No thanks. Just running after random little girls. He would rather be around adults. If you bring up the right subject (one that he finds interesting) he will talk to you non-stop until you change the subject to something not Jake-approved. His teacher has mentioned that he will follow her around, all the while she is trying to convince him to return to his seat, and let her know of things that are awry. Heaven forbid there is a change in routine, or something is out of place, or someone isn't doing what he thinks they are supposed to be. If these things happen, he will follow her around telling her what is wrong and that it needs to be righted. Anyway...back to the point....
Today we had an appointment to meet and get the results of his testing...51 miles away...during winter storm Q. Yeah. Super. Luckily his doctor called and said he didn't want us driving in the weather, and we could just have a phone conference instead. I was going to walk 51 miles in the sleet to get there because we have been waiting 3 weeks for these results. We have been desperate for someone to validate our suspicions, but no one would. We went to a respected center for autism and were told just ADHD. You cannot convince me that the things he does are 'just ADHD'. Not true. So let's just keep adding letters after his name. Jake ADHD, ODD, SPD, mood disorder. Or we could do like Mommy says and give him the right diagnosis of autism spectrum disorder, which would, in effect, encompass everything he does. But no, no one would do that. Until his psychiatrist. He just kept saying, "I just don't think I am wrong. I fully believe that he on the spectrum." So why doesn't his opinion count? I asked. It does, but it is a lot less disputable if you have testing to back it up. Hence our trip to the neuropsychologist. He could give us that. So he calls today. Jake's memory skills are fine. It takes him some time to recall information sometimes but it is average to 'better than average.' They also did testing regarding his attention. His results were 'atypical'. Apparently it was on a computer and you were NOT supposed to click the X. He clicked lots of those. So he said his attention was an issue. Okay, yeah, I get that. Then he says, "Regarding the autism testing...." and I think I stopped breathing... "I do believe that he has an autism spectrum condition. More towards the mild end of the spectrum than the severe." He then tells me he understands that is difficult to hear and I replied, "No, we are good with that." I would like to clarify. We were not wishing for this. It was just something we knew to be true. But when people tell you constantly that you are wrong, you start to question yourself. Plus we have lived with his mannerisms for 6 years now. So you start to wonder, "Maybe this is normal? Maybe we are being nit-picky. Maybe they are right and we are wrong?" But then you go somewhere else and you fill out another evaluation and you are like, "Yep, these things he does are not typical behavior." So I explain that we have thought this since he was 3 years old, and no one would validate us and we were so desperately searching for someone to give us that validation. He agreed that it is frustrating for parents to see things that no one else gets a chance to see, and then those things be dismissed because the doctors/teachers/professionals didn't witness them personally. You have no idea how true that one is. He also said that once you get enough pairs of eyes on a child, they will eventually see things that point them in the right direction. And once they start seeing the same things, you can't dispute them.
So now we have a vague idea of his diagnosis. He is going to write his final report, complete with diagnosis and recommendations and mail it to us. We can then read his findings in depth and share them with his school. I'm not an autism expert. I have read countless articles and sources regarding it, but I still know nothing. I don't know if autism spectrum disorder, toward the mild end is a diagnosis. Or if there is a specific classification within that. When I am filling out forms that ask for his conditions, what do I put? Do I just put autism? I didn't think to ask that when I had him on the phone. So we are getting somewhere, I think. We just aren't completely there yet. I don't think we will ever 'get there' in all actuality. Where is "there"? I'm not one of those people that believe you can cure autism. But I do think you can work with it. We have just been searching for someone to see what we do and lead us in the right direction to help Jake. So maybe we are headed in the right direction. I hope....
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