Hi...New here and going bananas...(m)

iVillage Member
Registered: 07-06-2006
Hi...New here and going bananas...(m)
10
Thu, 07-06-2006 - 12:22pm

I have been reading your board for a few months and I can't "lurk" any longer, even though I am not sure this is where we belong. My DS, 7, currenly has no diagnosis (except hypotonia.) He is seeing a psychologist who thinks he has ADHD but has also given me a book re. Asp. Syn. He is just starting OT for SI type issues, as we were turned away by the IU when he was four :( In the fall he will be in first grade and will have an IEP. He has some kind of auditory processing problem also. And to top it all off, he is very anxious, especailly now. I was reading an earlier post about kids who need to know where you are all the time. I have a shadow, too, and it is making me crazy. It is the absolute worst at bedtime!!

I'll spare you all the details, but I am so confused about what is going on with him. I so want to do the right thing and make all the right decisions. I don't know if I want a diagnosis or not. I feel like all we do is go to appointments and therapy. And I feel like I am neglecting my very darling 5 yr. old daughter.

Sorry to whine...I hope you understand. This too shall pass. Thanks so much for "listening."

iVillage Member
Registered: 02-20-2001
Mon, 07-10-2006 - 10:02pm

You know I just got an email where it was talking about needing a diagnosis for MA and an easier way to get it than waiting forever for a Dr appt.

 


Powered by CGISpy.com

 

iVillage Member
Registered: 08-26-2005
Mon, 07-10-2006 - 9:56pm
Becky,
Welcome to the board! I'm also in the philly area or about to move to delaware county from lehigh county. I have a 3 year old son with asd and a 2 year daughter old who has no diagnosis but has sensory issues and some "signs" of autism. I can totally relate to the feeling of always doing some kind of therapy because both my kids are always doing some kind of therapy session everyday.My son was in a social group run by E.I with a little boy who sounded a lot like your son. His mom had taken him to a developmental ped at age 3 but the doc was reluctant to diagnose him but did acknowledge his major sensory issues. His mom's insurance wouldn't cover any of his OT and she was getting no help from the IU so the doctor found a way to get her son covered with medical assistance even though he had no diagnosis. Maybe you could see if your sons doc could do the same?To be honest you can do a lot of the OT stuff yourself once you know what issues your son has sensory wise. Believe me you'll soon become an expert on all of this stuff!
Teresa
iVillage Member
Registered: 07-06-2006
Sun, 07-09-2006 - 3:36pm

Hi Tina-
I just learned about Ascend - there was a brochure at the OT office. I feel kind of funny going to a support group before we have a dx, but I will definitely check out the resources available through the link.

Hope you are having an awesome weekend.

Becky

iVillage Member
Registered: 02-20-2001
Sat, 07-08-2006 - 9:40pm

Becky,


Welcoem to the board!

 


Powered by CGISpy.com

 

iVillage Member
Registered: 07-06-2006
Sat, 07-08-2006 - 9:16pm

Thank you all so much for all your responses. I still feel like I'm going crazy...BUT at least I am not alone. And I am so thrilled that some of you are in PA also. We are in the Philly suburbs.

I am really bummed today because we found out that it is going to be next to impossible to get any more insurance coverage for OT at this point. DS has had 3 sessions and can continue throught the middle of August, but after that we are on our own. We have an HMO and need to change our insurance, but of course, no changes will be effective until 2007. I am fairly sure that my DS will qualify for PT through our school district, but now I need to start lobbying for OT also.

Just want to thank you all again for the support.

Becky

iVillage Member
Registered: 06-09-2005
Sat, 07-08-2006 - 7:54am

Welcome! My ds is also 7 and will be in first grade in the fall. He got his Asperger's dx at 4. I notice you mentioned the IU, are you in PA? I am, and there are few more PA people here.

Don't feel bad about whining, I think it's theraputic, and that's what the board is here for.

Kate

iVillage Member
Registered: 05-26-2000
Fri, 07-07-2006 - 10:02am

Welcome! It is very scary/frustrating/confusing while trying to find a fitting diagnosis, and I understand not knowing if you even want one. I will say that we just got our diagnosis of AS, and in all honesty it is actually a relief to have the diagnosis so we can put our energy into getting therapies etc.
My son sounds similar to yours--he is hypotonic, has processing issues, along with sensory and vestibular issues, and while we were going through the process of diagnosis I found so much comfort and support coming here. I hope you find the same!

Heather

iVillage Member
Registered: 06-25-2003
Fri, 07-07-2006 - 7:44am

Hello and welcome,


You are not whining at all. You have valid concerns and frustrations. This world of 'special needs' -regardless of the type of special needs is significant and requires a ot of adjustment. It's not easy -especially at first. It does get easier with knowledge and

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-26-2003
Thu, 07-06-2006 - 9:13pm

Welcome, welcome.

Some things in your post struck a chord with me. My son was denied special education at 4 as well. He was not yet diagnosed and his language skills were within 1 year of age level as where his cognitive skills. It was very frustrating. He also was put on an IEP around 1st grade.

Pull up a fluffy chair and sit a spell. We sure do understand.

Renee

Photobucket
iVillage Member
Registered: 07-12-2005
Thu, 07-06-2006 - 5:00pm

Hi there! And welcome to the board.

We do understand, we've all been there, are there, or (in other lurkers cases) are affraid we have to go there. It's really hard to find people who know what we're going through, which is why there are boards like this. It's frustrating, tiring, scary, and sometimes just outright funny. Lot's of ups and downs and rarely a moment of peace (I didn't get done until my youngest -of 6- turned 2).

Pull up a big fluffy chair and join the group. We have a plate of cyber cookies going around somewhere....

~SG-1Niner

APOV on Autism