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d.f · July 2012

My Son was diagnosed with PDD-NOS on Friday. It wasn't a complete surprise but we weren't expecting it either (the Developmental Pedi we saw in April who referred us to the Psychologist said she didn't think he has Autism but wouldn't be surprised if he got an ADHD diagnosis).

I've lurked a little in the past few months so I wanted to say hi.

We already have a lot of the services in place. We started him in an inclusive public preschool last fall and it was actually the SpEd teacher who came to us with her concerns. So he has an IEP. We start private OT through our local Children's Hospital on Wed. and we have a referral for private speech in the works. He has made such amazing progress with just the Speech, OT and Special Ed help during the past school year that I'm excited to see how much additional services help him.

I still need to go through most of the packet the Psychologist gave us, which I know has a lot of info in it, but for the parents in the know, off the top of your head are there any other things/services I need to look into? Can you recommend any reputable books or websites? I've done a little reading on the internet but I'm a little leary of venturing too far since I know there's a lot of misinformation out there.

Thanks!

ntyravgmom · July 2012

I would ask about behavior therapy, though the pre-school might be helping with that already. Books-The Out of Sinc Child and The Out of Sinc Child Has Fun. Both great books about sensory issues and OT. Other advice-just make sure you advocate and ask the therapists and school what you can do at home to help him meet his goals. But also let him just be a little boy.

d.f · July 2012

Thanks. I already picked up both of those books on the advice of his SpEd teacher a few months ago. I just haven't made the time to sit down and read them yet.

lite-bright · July 2012

Hey, D.

Wow. I know you were expecting a dx, but not on the spectrum. **hugs**

If you haven't already, put a call in to DDRC. They'll send you paperwork to do for any additional help you qualify for, and get you on the wait-list for the autism waiver. It's like seven years and our kiddos will probably age off it before they get any help, but at least if you get on the list it's better than not, if the budget ever allows for any expansion. They'll also send a check every once in awhile, as the budget allows, to help cover therapies, camps, etc. Suzanne Lindwood is our coordinator there, and she's been very helpful.

The book that was most helpful to me was Making Sense of Autism Spectrum Disorders, by Dr. James Coplan. I borrowed it from the library before buying it, so they definitely have it; but you can borrow my copy if you want. I also have Engaging Autism by Dr. Stanley Greenspan (Floortime).

You can always email or call me, about info or just to talk. Are you still doing the co-taught class for B this fall? If you are, maybe we can do a group playdate with one of the other little boys who'll be in there? He's very sweet kid with a speech delay, and I bet B would have fun with him and feel good about knowing a classmate going in. His mom is nice, we've gotten together with them before.

Are we going to see B at the Little Tykes camp tomorrow? I can bring you the books, and/or we could do coffee some time this week.

Email me if you feel like getting together, okay?

d.f · July 2012

Thanks K!

They decided to keep him where he is. It sounds like his teachers, Director, SpEd team fought to keep him where he is over the coordinator's recommendation. They didn't include me in that meeting, which I'm a bit miffed about. However, since I really like his current placement I didn't make a big deal about it. Playdates are always welcome. I think we keep missing each other at the Pint Size Playtimes.

Blake will be at the Little Tykes camp tomorrow too. I would be really grateful if I can borrow the books.

I'm think I'm honestly doing okay with it. I've kind of had the last 9 or so months to come to terms with the fact that something was going on. It's a bit of a relief to have a name for it. The psychologist had a lot of positive things to say about B, which was nice. All four doctors and specialists we've seen at Children's have called him "delightful" :-) She said she had to think hard before giving him the diagnosis, so really I'm happy she decided to give it so that we can continue and add appropriate services and therapies.

Thanks again and I'll see you tomorrow.

mjsweetgirl · July 2012

I feel like us CO girls need to get together! We have a lot in common. DS1 got his dx of ASD in Jan this year and we have been on quite the journey! I just want to offer up a big hug and for you know that you are not alone! Who did you see at Children's? We've been there every Tues for J's early denver start therapy with Dr. Katz.

d.f · July 2012

We should get together

B. saw Dr Friedman (Dev Ped) in April and we have a follow up appointment with her in Sept. I'd have to look at my paper work to get the names of the SLP and OT who did his evaluations in April. We saw Dr Piper (Psychologist) on Friday.

B has his first weekly OT on Wednesday and the scheduler didn't give me the name but we'll be going to the Westminster location.

LaceAndLilies · July 2012

I had a great post typed and then TB ate it :-(

Temple Grandin was diagnosed with autism at 3 years old and has written about her experience living with autism and overcoming the challenges it has presented as she became a very successful professional. I found reading ABOUT autism from someone WITH autism gave me a much better understanding than some of the other scholarly texts I had read. I would recommend starting with "Emergence: Labeled Autistic" and then checking out her other works. Here is the link to her website (sorry it's not clicky!): https://templegrandin.com/templegrandinbooks.html.

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