I know it's been forever since I posted, but that's life and I apologize. The last time I blogged we had just seen Jake's new therapist for the first time. After an office-cancelled appointment, we finally got to see him again yesterday. I still really like him; I think he has done more for Jake in a few months than all the doctors combined thus far.
That being said, I will explain my title. A year ago, as mentioned in a previous entry, we had Jake tested for Autism. They said he showed some autistic like tendencies, but ruled out that diagnosis. The doctor talked with us about his behavior with the new medicine, which is amazingly better. I'm not saying it isn't. But he still has some 'quirks' I thought we would just have to learn to deal with. He still has meltdowns, however they are fewer. He goes to sleep on his own, without Melatonin, but he still gets up in the night, has night terrors and doesn't sleep well. Small triumphs, that's what I thought. I thought this was Jake and that's that.
While we were talking, he was observing. He asked Jake to please sit in the chair and talk to him for a bit. He was putting together a train track. "Ignored" him entirely. After a while, Allen picked him up, and was going to put him in the chair, he goes limp, but doesn't really fight like he used to. He did fight him to finish the train track. He got up, found the last piece, put it together, then calmly sat in the chair. No fight, but it had to be done first. Then the doctor would ask him a question, no answer. In an hour and a half, never once did he make eye contact with him. He tried to get him to. He would ask him a question and give him a choice, such as: "Jake, why do you think you are so hungry when you get home from school?"....No answer..."Do you think it is because your morning medicine isn't working anymore?" Barely pauses, Jake says, " I think my morning medicine isn't working anymore...."Or do you think it's because your afternoon medicine makes you really hungry?"..."I think my afternoon medicine makes me really hungry."...."Or do you think it's both?"..."Both, I think."...The doctor tells us that is Echolalia. I wasn't aware of that. That's all the conversation he got out of him. We asked him to put the toys up, which he did, and come sit with us. He does. Then randomly, he is up again, getting a truck. We thought he was going to play with it...not the case. It was in the wrong place. He put it elsewhere, then he was good to go.
He says to us, "I don't agree with Columbia's diagnosis. I would almost guarantee that he is on the spectrum. Not Asperger's, but on the autism spectrum. High functioning, but autistic. We need to have him tested again, because they missed it."
I say, "How did they miss that?! I have been saying it for years but no one would listen to me." His theory is that without medication, Jake had so many bigger, more prevalent issues, that the little subtleties of autism were masked, and they didn't see them in the 5 hours we were there, and he met with 1-2 people. So he is referring us to a center that tests for an entire day, then you talk with the doctors for another entire day, and he will be seen by 5 different professionals, in different areas of expertise, from Neuropsychologist, to Occupational therapist, to Speech therapist... He said, "I can tell you he is Autistic, but that's not enough. We need other doctors to verify it so we can get him some help. But we will get him the help he needs and he is so smart. I have kids that are autistic that will never go to college, he can go to college with work. But they missed it, he is on the spectrum."
On one hand I am so relieved because I'm not crazy. I've been saying it for 3+ years but no doctor would collaborate with me on that one. But on the other hand, I was hoping that we had all the diagnosis we were going to get. That we were on the right track, we were almost to the finish line. I know there is no real finish line with additional needs kids. But I wanted there to be. I wanted to be at it. Now I feel like we have had some sort of major penalty and forced to start at the beginning again. I feel stupid that in the back of my mind I have always thought this, but once someone actually says that word to you, it is earth-shaking. Life just got harder for him again. And even harder than it was to begin with. I want so much for him, this is not one of the things I wanted. But, it is what it is. I switch gears and learn to deal with it while we are on the 4 month long waiting list for our second opinion when we already know. Pretty much it seems like we are just getting the verification WE need to get him the help HE needs. I don't want to wait. I want it now so we can get down to business. He's sinking sometimes again, and I don't want him to go.
Tonight was a bad night. BAD bad night. Meltdowns from the time I picked him up from tutoring. Over everything and nothing. Not having enough change with me to get the snack he wanted from the gas station. My fault, I didn't take enough time explaining it to him. We just went in to grab something to drink, I had $2.05 in my pocket, and his drink was 99 cents without tax. I told him he could get a pack of peanut butter crackers, that were 69 cents. He wanted chips that cost $2.59. I could not explain it to him that I didn't have enough money and my purse was at Grammy's house. Commence meltdown. Not a fit, it was a meltdown. Something was off, big time, tonight. He was biting parts off his eraser, Allen took it to throw it away because it had become a choking hazard. Meltdown. That one lasted a long time. It carried over to home. He had eaten already so we suggested he go lay down and watch cartoons. NOPE! Screaming, crying, stomping, etc.... for like 35 minutes. During which he comes to me and says, "NO ONE WANTS TO PLAY WITH ME AT RECESS!" *Knife to the heart.* Right there my world crashed and the tears came. He has a few kids that will play with him, but to him, no one will play with him. He told me last week that a little girl named Ariana won't play with him anymore because he chases her. I told him maybe don't do that, kids don't like that. Today, no one will play with him anymore. He named 4 kids that will play with him, but there are a lot kids on the playground, 4 isn't enough. Those are his words. I had myself convinced that he was good socially. I was wrong. We are around him all the time, so we apparently don't notice it. But the kids in kindergarten already do. Won't it just get worse with time??
Now the doubting and questioning start back in. I hate them. We will get through it all; we always do. I love him too much to have it any other way. I just wish life hadn't dealt him such a difficult hand. Why do some people have it so easy and some so difficult?
He's different. I love him. He's mine. I will never stop fighting. Guess I'm gonna have to put on my gloves because it's going to get worse before it gets better.
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