What's my next step?

iVillage Member
Registered: 01-30-2008
What's my next step?
10
Wed, 04-09-2008 - 8:41am

I hope you don't get sick of me asking all these questions!

Kim

 

iVillage Member
Registered: 09-10-2004
Wed, 04-09-2008 - 11:51am

Kim, ((((((((((HUGS))))))))))) we've all been in your shoes and know how scary/frustrating this time is.

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iVillage Member
Registered: 03-26-2003
Wed, 04-09-2008 - 2:16pm

(((HUGS))) It's so hard and rather bewildering to be handed a Dx and told this is the most important time and no one will help you because your son is too high functioning-- GRRRR! that Doc is NOT helping. I don't know anything about PLAY, but if you have to pay for it and do all the work, it might not be the first place to start. There are services out there for free, you might have to find and fight for them.

Way back when my son was first struggling we had the school district do a screening. It was a quick 20 min thing to see if he was ready for kindergarten. He'd struggled in preschool, but we knew he was extremely smart (was reading)so didn't know what to do. They sent us for speech therapy but just felt he was immature and said we should try kindergarten (his bday is late in August) and he could always repeat kindie w/ a different teacher if he wasn't ready for 1st grade (they had kids do that all the time). So, he had speech for one year and then finished kindie and was dismissed from speech and promoted to 1st grade. 1st grade the teacher kept saying, something is off, but he's brillant and we don't know why he won't go near other children or do any work while others are in the room, but he's able to do the work and ... 2nd grade teacher finally said, "you need to medicate this child...". We said , "no he needs a full eval." They did this and the psychologist said it's probably some kind of PDD or autism spectrum disorder, but you'll have to go to a specialist to get it Dx. We were in the middle of deciding to make a cross country move so we put it off--- the school put good supports in place so we didn't get the Dx. We finally got a Dx of HFA when he was 8 and in 3rd grade.

Anyway, to get the final Dx we went to the Autism Society here in SC. They referred us to the State Department of Disabilities, Autism Division. They actually had a psychologist who came out and did all the interaction and questions and tests and gave the Dx spent the whole day w/ us. I didn't have to pay for anything. We've also seen a developmental ped (and had to pay)and had the Dx confirmed and gotten great advice (but this one is connected to the university and is GREAT w/ spectrum kids). BUT the first people I called was the autism society. In our state they have great services and are a wealth of info.

iVillage Member
Registered: 02-28-2008
Wed, 04-09-2008 - 3:06pm

{{{{{HUGS}}}}}

You sound stressed out a bit by the 'window of opportunity' comment made by the doctor. And while it's true that early intervention can be important, the door doesn't slam shut at 6 yo. Anything you do for your son and *yourself* is going to help no matter how old he is. Coming here, contacting the school system, local support groups, reading information - both on the web and books , social groups, OT/ST, all that stuff helps. But in the midst of trying to help your boy, don't forget to just love him and enjoy him as he is. He's still the same little boy as before the dx.

You're doing fine with your efforts to get him help. I just wanted to reassure you that loving him, which you obviously do, is the most important thing.

Andrea

Andrea, mom to

Graham
Miles
Anson
iVillage Member
Registered: 01-25-2007
Wed, 04-09-2008 - 5:04pm
Is your preschool part of the public school system? If your son has a diagnosis for autism, the public school has to accept that. They don't have to provide services but they can't discount the diagnosis just because he's smart. My school system is very tightfisted with services like speech and O.T. but they accepted our diagnosis and have no problem providing "cheap" services like social skills groups and weekly meeting with school psych. It also prevents them from disciplining him the same way they do NT kids because he has special needs. Call it an insurance policy if things get more dicey down the road. If I were in your shoes I would take the diagnosis to the school and at least have him identified by the school district as being on the spectrum. Find out what your insurance covers with this diagnosis. If it doesn't cover Speech or O.T. you could try paying out of pocket for one O.T. eval and having them write a HEP (home exercise plan) for you. There is also a lot of info on the web about exercises and activities for kids on the spectrum. If you have iTunes, I was listening to a fascinating podcast with Dr. Fred Volkmar of Yale. The podcast is about Asperger's (he helped define the diagnostic criteria for it) but he also specializes in Autism and I think he says in it that he has diagnosed children under the age of three. The program was called Fresh Air and it aired on May 5, 2004. Terry Gross is the host and I think it costs about $4. There are also alot of DVD's and videos out there to help teach basic social skills so don't feel you are going this alone. We just started attending a support group and find it a great resource. If you feel yours should meet more frequently or could maybe start a play group yourselves, you might be the one to take the lead. Maybe you all could chip in and hire an O.T. to direct it per diem. Finally,if you have any doubts about your doctor get another opinion. If it does nothing else, it might put your mind at ease that you are doing what needs to be done.
iVillage Member
Registered: 08-27-2007
Wed, 04-09-2008 - 5:57pm

You sound just like us. The pedi who diagnosed my son does behavioral assessments, but I feel she really does not know Autism. She obviously saw the aspergers, but sometimes I wonder if he is really HFA ?


The school had no issues agreeing with the diagnosis after their 30 day evaluation. Geez I feel like they did a better job. Though between the two we and the teacher did lots of questionnaires, scales and notes. Thank goodness the teacher saw the same behaviors, considering we butt heads all the time.


Basically all signs point to Aspie....


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iVillage Member
Registered: 06-25-2003
Wed, 04-09-2008 - 6:27pm

Kim,

There is no such thing as a post that is too long, a poster who asks too many questions, *stupid* questions or a board hog.

I was totally expecting Peter's diagnosis, I had been a member here for months. But still, when it became official, it was like a kick in the teeth. A lot of people felt that way. You are not alone (the other half were relieved. those seem to be the main reactions: Shock or relief!). I posted all over here for weeks after our DX. I think I drove everyone crazy! But it is a great coping mechanism, and a safe place to process stuff so go for it.

If you go through the school for services, which you are entitled to do, they will likely perform their own set of evaluations. Most school will not diagnose, but they will identify areas of need, such as self help, speech and language and sensory processing. Be sure to specifically request an OT evaluation for sensory issues. If your son qualifies for services through the district they will be free. As he is over 3yo, you can apply now. The evaluations will probably take soem months or weeks. However now is a good time, because they will be doing the special ed placements for next year.

I think the developmental Ped gave you some bad advice. My gut tells me that maybe some of his buddies are involved in those other programs -and while they may be great programs- it doesn't mean he should discourage you from seeking help elsewhere, which he has effectively done.

To me the lees important issue is the actual diagnosis, but what services they can put in place for your child. The district will have PTs OTs and STs on staff or available, so it is probably a matter of scheduling some time. You can certainly look into insurane to supplement this, but I think the district is the place to start. Also the district will have his peers on hand for him to work with, unlike a private place where he won't know the kids.

I need to cut this short (!) sorry. I hope that helped. Good luck.

-Paula

-Paula


visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 01-30-2008
Wed, 04-09-2008 - 6:48pm

Thank you all so much for this advice!

Kim

 

iVillage Member
Registered: 03-27-2003
Wed, 04-09-2008 - 8:41pm

The thing about services for school is they have less to do with being smart or not being smart and more about how will the child function in school.

                                

iVillage Member
Registered: 08-27-2007
Wed, 04-09-2008 - 10:06pm
Don't worry about the smart thing. I heard the same thing,

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iVillage Member
Registered: 04-11-2003
Thu, 04-10-2008 - 3:27pm
I want to ditto the don't worry about him being too smart.
Samantha