am i over reacting?

iVillage Member
Registered: 05-09-2003
am i over reacting?
5
Sat, 09-24-2005 - 9:05am

My son is two years old and has been getting ST, OT, and DT through EI since he was 18 months. He's been diagnosed with an expressive language delay, oral apraxia, and sensory integration dysfunction. He's definately a quirky little guy, and I've been concerned about possible PDD_NOS or mild autism. I've been reassured several times by the EI professionals and his pediatrician that he is not autistic. However, I still have some concerns. I can't even exactly place my finger on it. He's just different from other children. He interacts with them, but in a very reserved way and tends to go off and do his own thing. He also has some very odd behaviors, for example he insists on wearing his shoes at all times (including bath and bed) and get's very upset if they're removed. He also has this same affinity with a hard hat. He crawls under tables and into corners a lot - to just sit and kind of space. He backs up into my lap, and is very resistant to direct eye contact - especially if you're trying. He even turns away when trying to get his picture. He used to line up his toys a good bit and repetitively ride his little tractor. He's gotten better with these, but will still line up when stressed or tired, or anxious. He also has a strange way of arranging his toys just so - he lays them out very deliberately although I haven't noticed a specific pattern. I don't know if this is all just his sensory stuff or what. But i just can't shake the feeling that something more is going on. Do I just trust that the EI people and the doc are correct, or do I go for second opinions, and third or fourth if need be? Am I just overreacting (as my husband seems to think so)? My husbands says he's just a peculiar little guy and is very smart (which does seem to be) so there's nothing to worry about. How do I shake this feeling that something more is going on? Also do you know of any websites that show (video clips) examples of children with PDD, autism, etc? If it's an issue of severity and frequency maybe i'll feel better if I can compare his behaviors to those truly affected..... TIA

Jen

Avatar for cathby
iVillage Member
Registered: 05-16-2003
Sat, 09-24-2005 - 9:39am

Hi Jen,

Here is an online screening tool....

http://www.childbrain.com/pddq6.shtml

If I was you, I'd get a good independent evaluation. It's always a good thing to have.

HTH,
Cathy

P.S. My DS *won't* wear shoes, you wanna' trade? LOL

iVillage Member
Registered: 06-25-2003
Sat, 09-24-2005 - 10:25am

Hi Jen,

welcome :).

Follow your gut. If you think there is more going on, follow it through until the nagging voice stops. My only regrets in life are those time I *didn't* listen to that little voice, and one of those times was when I thought there was something up with DS, and all the professionals kept *insisting* that he wasn't autisic/PDD. he was just too "outgoing".

He was finally diagnosed at age 5.5. Yes, I was right. One can be extroverted *and* autistic. it's just not nearly as common as "introverted and autistic".

I am not saying that your story will be the same as mine, but always to keep searching for the answers. No-one knows your child lilke you do, and if you think something is "off", you are probably right.

Talk to your ped about a full neuropsychological evaluation. Be warned: Often this testing is nto covered by insurance, and runs expensive. You can find out if there are any cheaper evals available locally, through a university, for example. The ST and OT may know about these, if the Ped doesn't.

HTH. Good luck and please let us know how you get on.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 05-09-2003
Sat, 09-24-2005 - 11:42am

I actually did that exact screening at childbrain.com and it came back with mild PDD. I've talked to the ped and he doesn't seem to think any further testing is required. Do I just go on my own and get an eval done. There's an institue (Kennedy Krieger) about an hour away that does complete evaluations for autism spectrum disorders. They actually have a department that specializes in research as well. I keep thinking about taking him there and having an eval done. But I wonder if I'll trust what they say since the professionals I've already talked to say he's ok and I don't really believe them. will it really set my mind at ease? The professionals have just said that he's shy, reserved, quirky, or challenging. But I still worry. But since he's getting speech, and OT do I even need to pursue a diagnosis? and my husband worries that if we keep going until he get's "labeled", that he'll be labeled needlessly, and it'll hurt his self-esteem and his acceptance with his peers. I think that he's somewhat in denial as he says he thinks he's just quirky as well. I worry about what will happen once he starts school.....Maybe i'm just a worry wort, or maybe i have some subconscious psychological issue that's driving me to get him labeled this way? I don't know. Thanks for all the help.

Jen

iVillage Member
Registered: 10-03-2004
Sat, 09-24-2005 - 1:30pm

Dear Jen,

Well, we didn't get the mild PDD-NOS until age 6, but we got SID, receptive language and anxiety disorder earlier. We had lots of speech, OT, playtherapy starting at age 3 before we knew spectrum, and all was a big help. The only thing I would have started earlier had we had a spectrum disorder dx is the RDI (Relationship Development Integration) therapy he is getting now, mostly through his ASD school. This is making a huge difference in his interactions with other children, self-esteem, etc. I actually gotta say that labels themselves don't make a bit of difference to kids, just their parents!!!! if there is a disability, THAT makes the difference with how other kids treat your child and how they therefore feel about themselves, not what grownups are calling the disability...

I do not think you are overreacting, and indeed I would look into more evaluation. It can't hurt him to find out a more thorough picture of what is going on, IMHO. But your son is already getting lots of help and that's good. Also, mild PDD-NOS doesn't make such a huge difference in a kid's life when so young, but really does when they are older and older kids are flying way ahead developmentally, leaving them in the dust. This is the difficulty in our kids when they are borderline --- noone thinks they need the extra help when they are younger and later, everyone sees the problem because they just don't catch up. And later is harder.

Does your pediatrician have experience actually diagnosing ASD? I would so look into a ful eval at the hands of an experienced neuropsych, and as there is often a long wait, I'd start sooner than later. As others have mentioned, this is very expensive and often not covered, but for us it was the best thing we ever did. A more throrough eval gives you exact strengths and weaknesses, therefore is much easier to believe than opinions. If your son isn't on the spectrum, the testing will say so, and you can relax.

Good luck to you!

Sara
ilovemalcolm

iVillage Member
Registered: 05-30-2005
Sat, 09-24-2005 - 2:36pm

Hi, Jen -- make an appointment with a developmental pediatrician. Don't rely on your regular pediatrician or even any EI therapists. They can have educated guesses, but they don't know. Your little guy very well may be "Just quirky" but if your gut is waiting for the other shoe to drop, go see if there actually is another shoe. My son is also two and was diagnosed with PDD this summer. I took the childbrain screening test and it came back "mild PDD". And I agree with it now that I know more about how wide the spectrum is. Calvin (my son) is also quirky and while he's social with us, tends to be a loner among other kids. He has never lined up any toys, but is obsessed with wheels and opening and closing doors. And as we were trying to figure out what was off about him, we kept seeing so many things that indicated that he was (and of course, still is) intelligent. Which only confused things for a while because at the time I didn't realize children with autism could be intelligent. I read the whole thing about how many autistic kids are also mentally retarded and thought "huh, that doesn't seem to be our case." We can see his brain working when he looks at us. But now I know that autistic kids can have a full range of capabilities, just like NT kids. To confuse things even more, his pediatrician didn't think he was autistic. His OT suspected and his ST thought it was all related to a low tone issue. But I kept having this nagging feeling that wouldn't go away. It honestly depended on who you asked and what kind of day Calvin was having. But our visit to the developmental pediatrician brought down the other shoe. He lacks a communicative and social component that should have developed on its own by now. This means he is autistic. Mildly so, she suspects, but still. It was awful to hear her say it, but in a way it was a relief. We now have Calvin is an intensive amount of therapy and he is doing well. I maintain the hope that he will overcome this. Obvioulsy there's no cure, but there is treatment that works. I guess my whole point of all this rambling is this: follow your gut. Even if people think you are overreacting. If you are, then whew! Now you won't worry about it anymore. But if you aren't, you are setting your child on the road to getting the help he needs. Best of luck -- let us know how it works out.

Kellie & Calvin