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| Mon, 11-07-2005 - 8:57am |
My son Jake is 26 months old, and has been getting EI Services since he was 19 months old. He's gotten ST, DT, and OT weekly. I was becoming deeply concerned about possible PDD-NOS, but have been repeatedly reassured by EI staff, and his pediatrician that ASD was not an issue since he makes good eye contact (although I've read otherwise). I scheduled an eval at Kennedy Krieger for him (we're still on the waiting list). The thing is that in the meantime he's had an "awakening". There was a specific day that it seemed as though someone flipped his switch and he's been really good since. Most of his sensory issues seem to be resolved (his new OT agrees), and it looks as though he'll probably be discharged from OT relatively soon. He does still have some speech issues. I've repeatedly done the PDD screening on childbrain.com and it always came out mild-moderate PDD. Well, I took it again since he's been doing so well, and it still came out mild (although a much lower score than previously). So here's what I'm wondering - can a child "get over" PDD, or does it mean that he didn't have it in the first place? And as a child continues to improve, can he improve off the spectrum, and if he does is he garunteed to remain off the spectrum, or is it possible to regress again at certain developmental stages (like starting school, etc)? Jake is pretty shy, it takes him awhile to warm up, although he's more likely to engage with adults than with other children. He doesn't speak much around others, but he does pretty well (although often difficult to understand) around just us. He interacts and often asks us to play with him. He has few to no sensory issues anymore. He appears to have some immediate echolalia (although it may be developmentally appropriate for him just learning speech). He still ear taps a good bit, sucks his thumb, insists on having a blankie, often avoids eye contact (if he's into something or you're deliberately trying to get him to look at you- could just be stubborn), and still ignores when you call his name (if he's into something or just doesn't want to deal with you). He often passively accepts hugs or cuddles, but has begun to actually give hugs and kisses (if you ask him). He doesn't like when I leave him, but doesn't really seem to care when I come back. He rarely lines things up anymore (not like he used to), he doesn't point things out that interest him, but will point to something if you ask him to (like where's the plane). He attends very well to books, and could sit and watch tv all day if you'd let him (but he does get awfully upset when there's commercials), he can also follow your point. So does it sound like I need to be concerned still? He's come so far and is doing so well, but I'm not sure if I should cancel the eval or not. I'd feel bad (although relieved)if we went to the eval and he's fine - feel like I'd wasted their time. But I also don't want to cancel it and not go and still wonder in the back of my mind if he's ok or not, or wait until he starts school and has problems that we could have prevented or begun work on. So, I'd love to hear your opinions. Am I just an overly concerned mother whose read too much? Or is there cause for concern? Thanks so much.
Jen

PDD = Pervasive Developmental Delay.
I am sure there are developmental delays which are not pervasive, but I don't know where the line is. keep the appt at Kennedy kriegler.
Sorry, for a short answer to a long question, but I am rushing out the door.
-Paula
visit my blog at www.onesickmother.com
If it were me, I'd keep the appointment... I think that if you have concerns, you need to talk to someone who can either a) help you address those concerns and give you resources, information, etc., or b) make you feel better by telling you everything is fine. It's a win-win situation, seems to me... (And certainly, don't feel guilty if it turns out everything is fine with your son!!!)
In terms of "improving off the spectrum," I don't really think that happens... I think if you're on the spectrum, you're on the spectrum. Having said that, I think that some kids to improve markedly when they receive help. I also know that these kids often go through good phases and difficult phases, depending on their stress level, etc. It's hard to say, you know? But that's where I think keeping your appointment is a good idea -- you'll be able to get a professional, 3rd party opinion on all this, rather than just trying to guess (and worry, and worry, and worry -- like we all do!) ;-)
My DD actually has an eval appointment with a Dev Ped tomorrow, so I can relate to all your anxiety...
Jennifer
Well, here's the problem. PDD kids DO develop, just more slowly and with help. Take that help away and they may not continue to develop. Here's the problem with much of our education system. When our kids are doing well with support, they take away the support. All at once. Then our kids start falling apart and they wonder what happened. Didn't they "fix" them?
There are months and months where my son is almost normal. When he is, he needs less services and support. Now, my son has a borderline dx of PDD-NOS, and yet I always err on the side of services and support. We have been extremely gradual in upping his challenges and demands, keeping his sensory issues calmed, etc. BUT when he was in unsupported and difficult circumstances (for too long) recently, the big autistic-like behaviors came back in full swing for awhile! This was very hard on him, and confusing, hard on everyone, and it had been such a long time that we'd seen those behaviors that it was very depressing as well. Now that he is back in supported situation, he is doing super great. Do I think he might go off the spectrum? He might, he might not. That's not my big priority these days, actually...
I would not get rid of the services until you are clear that they are not needed. Your child needs to be observed over time and under greater challenges. Also, if your son is real comfortable in his current school and progressing nicely, that's great, BUT that comfort may not transfer to another school, or outside play situations, or sudden changes.
Anyways, to answer one question, yes, some children have been known to go "off the spectrum". Most of those children were pretty mild to begin with. But it is necessary to observe them over many years in order to know whether or not they have done so, because more problems can certainly crop up later when social demands are much higher and more complicated.
I myself have days when I feel like I jumped ON the spectrum. This is just not an exact science here. The big question is can a child interact on their own without support, with other children, under duress, do they continue to make progress? What is their awareness of the big picture, how is their executive functioning? And do they need services to do well and continue to progress?
I hope this is helpful. It is always so lovely when the PDD tendencies are toned down, or even gone. And those times are also great for our kids, and they are so happy and make so much progress then.
Good luck, let us know what you decide and how things go!
yours,
Sara
ilovemalcolm
Jen,
I agree with what the others said. I would keep the appt too. Better to cover all your bases!! Kids on the spectrum do have their good days and their bad days. Stress does make alot of their tendencies to surface. So if everything is going great, no stress, they're comfortable, routines going well....then, they are apt to be more calm and their autie traits can diminish a bit. With intervention and therapy, kids can improve in many areas.
My son had mild tendencies as a baby. I thought he was a bit shy, different personality, etc. But as soon as preschool started, all of his autie traits surfaced!! Now looking back, I now see the autism signs. I just wasn't familiar with autism, didn't know anyone on the spectrum. I didn't know what to look for, or even that I should've been looking for autism. I also did the test on childbrain and my son scored mild to moderate too. I was wrong. Maybe I answered the questions wrong, I don't know. But a thorough eval will help put your mind at ease.
michelle