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looks like I'll soon be an official member of the mamas of kids with special needs clubSubmitted by Emile on Fri, 05/09/2008 - 7:37pm.
Back in January I wrote about concerns I was having about my 3 year old's language delays: http://www.hipmama.com/node/36770 Spurred in part by the responses from you lovely mamas, I initiated an evaluation of him with the Dept. of Education. It was kind of funny, because once I'd made the first appointment, I immediately felt less worried. I really thought that they were going to very quickly say that he was well within the range of normal, and that they'd be cross with me for wasting their time. Turns out I needn't have worried about that... In the past three months he's had his hearing tested (it's fine) and been seen by a social worker, a child psychologist, a speech pathologist, an occupational therapist and a physical therapist. The speech and occupational therapists both told me at the time that they were definitely going to recommend services, and one of them kind of gently hinted that he may have PDD (kind of a catch-all diagnosis for having some autism-like symptoms). For the last year or more the possibility of something like this as been nagging at me, but I always dismissed it as being impossible because J is so cuddly and affectionate -- but now that I've read up on these things a little more, I know you can be both autistic and snuggly. And meanwhile I've been looking at his behaviors through a new lens, and seeing them differently-- things kind of click into place. In a way, getting an official diagnosis would be kind of a relief: he's not the way he is because of bad parenting. He can get help. So this Wednesday, there's a meeting with the head of the evaluation center and a representative from the Dept. of Ed. to decide what services J will get. I feel kind of scared about it. I don't know what to expect. I don't know if I should do anything to prepare for it. I don't know how much my input and opinions matter. I don't know what's best for him, although I am hoping that they will offer him a place in a special needs preschool, in addition to therapies. Meanwhile, I feel like things are happening backwards. There has been no official medical pronouncements about J's condition, and I don't know if this meeting will result in one. I have kept J's doctor in the loop, and sent her copies of the evaluation reports, but evidently they didn't spur her to hook me up with a neurologist or anything like that. So -- if anyone has been through this process, you know I'd love to hear from you... especially about what to expect from the meeting. Oh boy, and if anyone has tips on how to wean an autistic three year old, I need those too... As always, thanks for listening. You know, I actually have read Curious Incident of the Dog in the Nighttime, and enjoyed it very much and found it illuminating. If my son is in fact autistic though (I'm probably jumping the gun a little to throw this term around so much in my post), he has a much less typical form of it. J is tactile, very quick to latch on to strangers (he doesn't talk to them but follows them around and tries to do what they do -- this can be very alarming at the playground, because he seems to be especially interested in adult men), and far from being wedded to routine he seems to thrive on anarchy, and certainly does his best to promote it in our household... This is why I am so confused, and feel anxious about not having a diagnosis, even if it may be premature and not in his best interest to get a label now. But anyway thank you for the vibes and love, believe me they are much appreciated. Diagnoses can be amorphous things. These neurological and behavioral disorders are sets of symptoms and behaviors, and there's no blood test or anything that can always give you a pat answer. I hope the meeting goes well, and you come up with some ways to help you and your son. Good luck with the weaning. I don't have any advice, but please keep us up to date. I don't know if kellymom.com has anything. Mothering.com might, too. Sunflower the unflower different states have different policies, but for the most part you go through a ton of evaluations with different people and then they tell you a bunch of stuff which may or may not be helpful. A diagnosis is often the key to getting help, because then they think they know what to expect. However sometimes they want to do stuff you don't want them to do, and then you have that to deal with. It sounds like you want whatever services you can get, which is great. Hopefully it will be easy to get them. Keep in mind that there are appeal systems (in all of the systems) if you don't get what you want right off the bat. Usually a diagnosis comes from a pediatrician, neurologist, developmental pediatrician etc rather than therapists (OT, PT, Speech etc) or school systems, but they may talk about their ideas. I think it's reasonable to push your doctor to make a diagnosis if one is needed, or to direct you to someone else who can. I guess it all depends on the diagnosis and the make up of the team. Henry, thank you so much for taking the time to reply in such depth. I get what you're saying about experts being blinded by their expertise. During the evaluations, even when I sensed that they were kind people who sincerely wanted to help children, I also had a feeling that to some extent they had to find something wrong in order to justify their jobs... It's interesting that you are so definitely resistant to getting therapies you feel your son doesn't need, whereas my gut feeling is that as long as the therapies don't cause harm, the more the merrier. I guess the difference is that you know so specifically what help your son needs, and also you have had to fight his whole life not to have him defined by his special needs. I on the other hand just don't know as yet exactly why J is delayed with his speech and his behavior-- he was full term, and the first two years of his life, he was blooming with health and hitting the milestones like clockwork. His developmental delays snuck up quietly on us in this last year or so and have left me baffled. I'm happy to try everything (short of medication), just to see what helps. And I might as well be completely honest here -- trying to engage with him can be so exhausting and frustrating (and this is compounded for me in that we have no support network of friends and family where we live) that I have to admit it would be a relief to hand him over to someone else, if only for 45 minutes or however long the sessions are. And the physical therapy room at the center we've been going to is pretty cool. It seems like it would be like free one-on-one Gymboree, minus the dumb songs. I wonder though, if one of your reasons for being selective about receiving therapy is a feeling that the more therapy he gets now, the less likely the dept. of education people will be willing to integrate him into mainstream schools when he's older? I guess that's something I can ask at the meeting. |
Vibes and love. Read "Curious Incident of the Dog in The Nighttime" and "Extremeley Loud and Incredibly Close" if you get a chance. Both novels with autistic protagonists.