Sticky thinking?
Find a Conversation
| Thu, 05-03-2007 - 5:41pm |
Somebody here mentioned sticky thinking. My son was diagnosed with PDD-NOS two years ago. Since then he has come a long way. He started Kindergarten this year in a regular class and has done fine. He got discharged from speech (school district) and OT (private) a month after school started. His use of language is fine now, no echoing, uses pronouns correctly, and all that. He currently has some stuttering, which I am trying to figure out if it is ok or actually dysfluency. The ST said at discharge that she'd noted it, and if it still persisted after a year we would need to deal with it. So I suspect he will be back in ST this coming Fall 2007. At the ARD meeting, his teacher, who has 30-something years of experience, said she'd had NO idea of Aaron's issues. He seemed like a 'regualar' kid to her.
I have sort of wondered if the PDD diagnosis was accurate. He still has some sensory issues, mainly gravitational insecurity and zoning out in a crowd. He still lacks gross motor coordination too. But he is very social, has friends at school, cousin friends. On days I volunteer at the school some of the other kids are excited to see him.
I have no immediate plans to return to the Psychologist for follow-up, because getting the diagnosis from her did not change anything we did. We also have money/insurance issues and paid for her services out of pocket last time.
But we had an incident a few nights ago that reminded me of his more difficult younger days. Has me thinking again maybe his diagnosis was correct. Here is part of an email I sent my brother, who is kind enough to let me vent a lot!
"Aaron had a fit like I haven't seen in a LONG time this evening. Makes me sick inside, scares me. He used to do this a lot more. It is like we have a misunderstanding that I can't clear up and he can't get over. We'd been practicing on his Batman training wheels bike and he'd finally made a little progress. He has so much trouble and can barely ride with the trainers on. I was trying to describe to him how eventually he would outgrow that bike and we would have to get rid of it and find him another one. Which is why he needs to practice and learn to go without training wheels, because the bigger bikes don't have training wheels.
He flipped out, saying he did't want me to get rid of his bike! So I explained that he could keep the bike as long as he could fit on it, and when he didn't we'd get him something else. Over and over I tried to calmly explain this to him. He would scream, "I know!" and then go right back to crying that he did not want me to get rid of his bike. He wanted to be left alone in his room, so I said ok and went out back with the dog. I was in the BACK of my backyard and could hear him screaming at Maddie. She was crying when I got in and I asked him what the problem was. He said he did not want her looking at him. So I sent him back to his room. "
Your input is welcome.
Amanda, mom to Aaron, 6 and Madeline, 3

Ahhhhh what it looks like is you were changing things on him and he couldn't take it. I forget myself too sometimes. I had an opportunity to take my son to do a test at school today (long story) but it was a real quick open window. I told him what was going to happen but we had to leave now.
He freaked out, and I realized whoooo wait, I didn't give him enough time for this. He hates change and transition, so I realized I had to stop trying to convince him and just re-schedule.
This right here reminds me of the time I took his crib out and got him into a toddler bed. At the time I had no clue about all of this, and he freaked. Well years later he will STILL talk about how I took his crib away.
Hey, what can you do sometimes????
I sometimes question my son's PDD diagnosis too, especially as he's getting older. But then he'll do something to remind me how difficult it used to be and I feel like that dx is right on.
We have alot of problems like you describe. We just bought a used mini-van and DS likes it just fine but he was worried we were going to get rid of our old car. He started to get really worked up at the car dealer til he realized that both cars were going home with us.
Tonight before bed he had it in his head that he needed 4 stories instead of 3 stories (which is what we usually read). He was just inconsolable and wouldn't settle down and it was like the fit took over and he couldn't even remember why he was having it.
He definitely has his own ideas and God forbid if you try to change things on him midstream. That is the biggest PDD symptom that I see lingering from his earlier days.
I guess what I'm saying is that our kids make such great progress that sometimes we forget the things that trigger the dx in the first place.
Heather
You reminded me of something I had forgotten about. Aaron made the transistion from crib to bed ok at about 28 months. Not long after that though, we were rearranging some stuff in his room and hanging things on the walls. He flipped out completely!
But now he really is ok with changes. I think his brain for some reason, only heard the part about me getting rid of his bike and he could not focus on anything else.
Hi there and welcome.
My son is dx'ed PDD-NOS and also mildly so. PDD-NOS kids are often much more social, mine sure is, and even maybe more flexible than alot of spectrum kids, again, my ds is that, too. And when his world is very well, happy, it is so easy to think the dx is way off. BUT every spectrum kid is vastly different from the next one, and it has been important to keep in mind his needs as he ages. Having difficulty comprehending the world around him because of social cues and misunderstandings/information/interpretation shows up in very unpredictable ways and times...
And sometimes his PDD difficulties are not mild. Our ds is now almost 10, and life is much more challenging for him now than when he was 5/6. As the challenges increase, the PDD part of him is more challenged. The problem becomes in how to continually address the individual's needs. IMHO, they don't get "fixed" but the potential for learning is always there and the coping skills grow. In the younger grades, this need can be harder to see as the structure in school is stronger and many of our spectrum kids needs can be met comfortably, as ALL children need more care-taking.
As our kids get older, school demands that they be more and more independent in their thinking, strategies, and maturity. Other children mature faster and pick up skills like breathing, while ours continue to need assistance to learn intangient abilities. Sudden changes, reading social situations, etc. can still be a problem for my ds sometimes, but he IS ALWAYS LEARNING! However, if a grownup or teacher assumes that there IS no PDD problem (ESP. one he really doesn't know and trust), and makes demands he is not up to yet or assumes Malcolm is being manipulative or defiant "on purpose" to get "out of" something, etc. Well, then we can run into big trouble. And then sometimes not.
So, keep the dx in mind. It is terrific that your son is doing so well, and it is almost the end of school year and he had a great year. We have not been so lucky in school programming & are homeschooling this year (long story). My son will continue to need OT and Speech for pragmatics for a long time, but getting it regularly helps him stay focused and better able to process and therefore grow. And most days, you really might not know anything was particularly unusual about my ds. And then some moments ... not.
Sara
I'm so glad you brought up the thing about people who don't know about the ASD dx thinking that our kids are manipulative or defiant. I actually have this problem with my DH who thinks that Tom is being manipulative where as I see it as everything having to be just the right way for his comfort zone. DH is much less on board with the PDD dx than I am, which can be frustrating in lots of ways. ]
Heather
We often go back and forth about all the "normal" things our 8yo Aspie does and then some little thing will remind us that the dx is right. The training wheel thing really brought it home again because my son will be 9 in Sept. and still needs training wheels. The very thought of getting rid of them freaks him out and the problem balancing, and coordinating his body on a two wheeler seems common among ASD kids. (My nephew was the same way and he reminds me so much of my son. His parents refused to consider it, so now he's a brilliant 15 yo flunking out of High school and hoping to get work in the auto body field.) My son is aware that his mind gets stuck on things and sometimes I will hear him say " Don't think of that now, you have to focus!" It breaks my heart because he's trying so hard. My husband felt that he couldn't ride a bike because he was out of shape from playing video games all the time. The Neuropsycologist said he is avoiding those activities because they are really hard for him. In other words, the avoiding it isn't making it hard, it's hard and that's why he's avoiding it. I know it sounds screwy but it makes perfect sense to me.
I am going to give you the advice my ped told me when Cait was about 6 or 7 and I thought she wasn't PDD anymore. She very wisely said, if a child with ADHD takes meds which control the ADHD it doesn't mean they aren't ADHD anymore.
She then said if we seriously thought Cait was not PDD to wean Cait off all supports (IEP and such) and if she could go without all those supports and be successful for a year she would agree to take away the diagnosis but not before.
It didn't work for Cait but it was good advice. She made it only a few months without an IEP before we were testing her to get her back on and kicking ourselves but I don't regret it. It was nice to give her that try off special ed for a little while.
Renee
Hi, Renee.
From reading the responses, it is good to see I am not the only one who plays the, "Is he or isn't he?" game in my mind. Seems to be my constant state of being for the last year or so. He went most of this year with no IEP. But really, I don't think he should have been discharged from speech with the stuttering going on. But it was still fairly new at the time, and the ST wanted to give it a year. He'd tested normally in all other areas of speech, so he got booted out!
I have to agree with Sarah's (iloveMalcolm) post. As they get older more is expected of them and we might see more problems. Kindergarten was great for Aaron, every day filled with stuff he loves to do with a little 'work' thrown in there. The real test in my opinion will be first grade at least.
Amanda
Thats so good that he's okay with changes now. Yea I can see my child only hearing the "get rid of part, versus adding another one to it part."
My son doesn't have a dx yet, so he has big time problems with changes. I'm so glad to know that once he gets help, they can do something about this. It really is hard to live with at times.
Lainie