Finally – 11/29/2010 – 8-1/2 years old.
Official diagnosis by psychiatrist – Charlie is autistic.
Now I know a direction – how to help.
I haven’t written in this blog in over a year. The reason is because I set unrealistic goals for it/myself and my ability to contribute to it. I do hope in the future to put all of Charlie’s history here with all the details and have it highly organized. But I don’t have time for that right now.
In the meantime, I’m just going to start blogging our experiences as we navigate his illnesses/afflictions. It’s very clear to me he is autistic, and discovering Temple Grandin and her teachings/info recently has driven that home. I am now committed to doing everything I can to see that he grows up to fulfill every bit of potential he has by basically devoting all my extra time to doing everything I can for him. My basic approach will be WWTGMD? What Would Temple Grandin’s Mom Do?
I haven’t seen the movie ‘Temple Grandin’ yet, but from the descriptions I’ve read, she was very similar to Charlie as a child. Her mother was advised to put her in an institution, but she refused. Instead devoting all her energy to tuning in to her child and what she needed. It seems that one of the biggest successes was to engage, engage, engage!
For me, this doesn’t come naturally. I am a fairly solitary person myself. And if he is happy playing alone, I am happy working or writing or cleaning or doing something off on *my* own. So this will have to be a habit I forge – pulling myself out of my own solitude so that I can pull him out of his.
I don’t plan to do exactly what Temple Grandin’s mom did for Temple. I plan to do what Temple Grandin’s mom would do for Charlie. To study and focus and find his strengths and develop them and find his weaknesses and try to build them up. To really tune in to him and keep trying.
So today he was watching Wheel of Fortune while I was checking my email and reading news online. He was watching *the same episode* over and over again and drawing. So I went to see what he was drawing, and he was drawing the Wheel of Fortune logo. I told him how great it was and asked if he wanted to go do something with me now that he had drawn his picture. He said no, he wanted to keep drawing. So set about to start over with a fresh piece of paper and start drawing the same thing again. I was watching him and he said, “You don’t have to watch me” in that very serious tone of his.
So I said ok and went back to my office. After thinking about it for a few minutes, I decided maybe something that combined drawing and Wheel Of Fortune would be the game hangman. I was trying to think if he would be able to grasp the game or whether it would frustrate him and set off a tantrum. Then I decided just to try it and stop if he started to get angry.
I went out there and pulled up a chair and got some paper.
I said, “Hey, I have a new game to teach you. Do you want to play?”
“Are you sure? It’s kind of like Wheel Of Fortune. It’s called Hangman. Here, I’ll show you.” And I started drawing the gallows (what morbid game, actually) and made 3 dashes for letters.
He said, “No, don’t!”
I thought of stopping, then I said, “It’s only 3 letters. I’ll bet you can figure it out.” And I explained the basics and said, “Just guess one letter.”
He guessed a “T” – which was a great guess! (The word was ‘cat’.) Then he guessed two wrong letters. Then the cat jumped up, and I said, “Oh hi, kitty cat!” Trying to give him a hint.
And he looked at the word and said, “Oh, you know what ends with t…..!!! CAT!”
So he won. I said, “Yay, good job!”
He was happy but didn’t want to play anymore and wanted me to go back to my office. So I did and Googled “engaging autistic children” and came across an article that said if you want to engage autistic children, don’t try to get them to do what you want them to do. Just start doing what they are doing and try to get a dialog or back-and-forth going that way.
So I went back out there, got some paper and sat down. He asked what I was doing, and I said I wanted to draw with him. He helped me find a blue crayon, and I started drawing the Wheel Of Fortune logo. He then asked if I could please go in my office and do that. So I talked to him for a minute about it, but he said he did want me to go, so I did.
About 15 minutes later he came and asked if he could play Luxor 3 on my computer. And I had a brilliant idea. I said, “Let’s see if they have a Wheel of Fortune game for the computer!” And he was very into that. So we found the official game and downloaded it and got it going.
He was very into it, loved its authenticity (he always wants to copy everything exactly), and just jumped right into it. He couldn’t get through the puzzles without a little help from me, so I took that as my “in.” We played several rounds and had lot’s of good communication and shared problem-solving, and he was ready to go do something else.
I thought that was a great success and purchased the full version of the game. It just takes trying until you find whatever works that day. Took 3 tries for 1 success, but I don’t think that’s half-bad. Better than if I just let him isolate, in my opinion.
I know everyone needs time to themselves, especially kids like Charlie. But the hours and hours on end he spends that way at times isn’t good for him, in my opinion. I think engaging in a meaningful way, even if he thinks he doesn’t want to, is going to be key to his growth and fulfilling his potential.
I finally had my appointment at Children’s Hospital today to get the results of Charlie’s neuro testing two weeks ago. I’m not really sure why I had to go in to Seattle to hear what they had to say. They could have just sent me a letter that said, “We don’t know anything new.”
- He clearly has ADHD
- He clearly has ODD (Oppositional Defiance Disorder)
- He may or may not be autistic
Thanks! I could have told them that. In fact, I’m pretty sure I did.
The ADHD and ODD doesn’t really need to be addressed, because everyeone I’ve ever met agrees with me that he has that symptoms to qualify being diagnosed with both of these things.
But what I don’t get is why no one can tell me why he is developmentally delayed. What is the underlying factor/disease/condition. He is clearly intelligent. So why did he not speak conversationally (minimally, even then) until he was 4-1/2 and the delay in potty training and motor skills and the tantrums and behavior problems.
Everyone told me that Children’s Hospital neuro team would be the one’s to figure it out. What they told me is that they don’t know and we may never know. They not only couldn’t tell me why the delay, but couldn’t tell me whether he would continue to be delayed now that his speech has kicked in and he is getting extra help.
The only “new” info they had for me was just a solid number – That he was in the 16th percentile for speech cognition – basically how he processes what he hears said to him. 16th percentil means that he is only better than 15% of the rest of the kids his age. To be average would be to be in the 50th percentile.
So really, that is not news to me, but at least it’s a solid, measurable figure, I guess. Oh, and it doesn’t do us any good, because to qualify for special help (one on one speech therapy) at school, he needs to be in the 15th percentile.
They said he clearly has many autistic traits and they pretty much matched my opinion that he meets all criteria for autism except the social aspect – but that he does kind of qualify for the social aspect. He does not make friends and does not have satisfying social interactions because of a lot of his behaviors. So they said that he may or may not be autistic.
They want him to go to a behavioral psychologist and try an ADHD medication specialist to find the right meds for him. Then wait a year and if he still can not make and maintain appropriate relationships/interactions with others, he could still be diagnosed as autistic.
I’m not happy about waiting a year to see what is wrong with him. A diagnosis of autism is not going to help him any. I wanted to know what else it could possibly, and they said there is nothing else to explore.
So my plan is to work with him myself on his weak areas – speech cognition and vocabulary (though I’m not sure how to do this) – and find out what I can about his sensory problems possibly causing his ADHD symptoms (which she admitted could be happening) – and only then explore medication. Based on my own research and the opinion of a sensory specialist.
I don’t want to jump right into medication. Because what if medication blocks his ability to express that he is uncomfortable? And if he is uncomfortable, what can I do to make it right? What sensory things can be done for him to prevent his discomfort and these ADHD-like symptoms from keeping him from learning, understanding and developing normally?
So anyway, there is is. He continues to be Developmentally Disabled with additional diagnoses of ADHD and ODD. (I think ODD is bunk, by the way – he’s just stubborn and on his own agenda – but that’s what they said he has.)
I was just chatting with someone on Twitter about Charlie and his preliminary diagnoses of mild autism and ADHD. She was asking me about meds and how he did and things, and it made me realize a couple of things and made me realize I had a blog post, here.
It’s clear to anyone who spends any time around Charlie, that he has ADHD. At least on the face of things. Whenever we visit a doctor for the first time and the doctor sees that Charlie spends the whole time making noise, talking, moving, getting up and down off the table, picking things up, opening the door, flipping light switches etc, I invariably get the same question from the doctor: “Is he like this ALL the time?”
“Oh yes,” I reply. And they get that look on their faces of “wow.” Usually expressing, ok, we have ADHD here, let’s talk about options, how do you cope, you must be exhausted!
So he’s tried 3 different ADHD medications, and I found each of them to be not very effective and have side effects I really didn’t like, so I took him off of them. He was last on them early September of 2008. In October 2008 we had a screening/meeting with a neurologist at Children’s Hospital in Seattle. 3/4 of the way through he asked that inevitable question “Is he always like this?” Same basic reaction.
So he gave Charlie a preliminary diagnosis of ADHD and mild autism (there were other elements to the meeting other than ADHD concerns). And recommended Charlie for further neurological testing based on that. Happily that appointment is finally set for January 12th!
In the meantime, I’ve had numerous meetings with his teachers, counselors, school nurse/therapists, etc. And Charlie’s teacher said something that really struck me. She said that Charlie just seems so uncomfortable all the time, that “it’s like he is just trying to crawl out of his own skin.”
Wow, that really hit the nail on the head. And it makes sense. Sensory issues are a big part of autism. I am coming to really believe that his sensory issues make him so uncomfortable that he just can’t hold still. He’s always twisting and bumping into things and pulling on his clothes and marching & twisting his body even while playing video games.
And I think it’s due to his comfort level and not ADHD, which would explain why the meds didn’t really work. I’d be happy to hear any thoughts/comments any readers of this blog might have! I think the idea has some merit and could be a different path of treatment.
Charlie’s journey through finding out just what he needs and how to help him. Methodically and in as organized a fashion as I can give it! Hopefully a way to fight your way through the mazes and red tape with as little trouble as possible. It’s not always easy! Hopefully the lessons I’ve learned can help others.