What next for my 13 yr old with PDD NOS?

JOANNE - posted on 05/16/2011 ( 3 moms have responded )

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I'm at a loss !! Not sure how to even begin, my 13 year old son has just been diagnosed with PDD NOS. I've been up all weekend with my head spinning ! He was mis diagnosed by our school system in 1st grade for ADHD and I tursted in them.

The reason for his neuro pysch eval was bassed on concerns that I had. Being employed by our school system for the first time this past yr I was able to see my son in school and actually interact with other 13 yr olds and his teachers.

I new since he was a baby that something was different about him but trusted in his pediatrician & early intervention to guide me in the right direction. Needless to say everyone around me has let me down and my son has been the one really suffering . No friends, poor academics, bullying , and depression.

What do I do next ?!! Any suggestions?

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Tami - posted on 05/30/2012

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my story is very simmilar to yours. first off i feel for you. i noticed things in my son in pre school but they wouldnt evaluate him until kindergarten. they misdiagnosed him as having adhd as well. he was on stimulants for 8 years. ye failed 7th grade this year, and i had him tested and evaluated. they determined that he does not have adhd, and they are thinking more along the lines of pdd-nos, and sensory issues. since this school year is over, we have to wait until fall and have the school test him and decide if he qualifys for an IEP. if not we will try to incorporate a 504. im not sure what all is available to you in your state, but there are support groups out there to help you understand your rights and your childs rights concerning testing and accomodations available. good luck

Ani - posted on 08/18/2011

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Schools should never diagnose anyone. They aren't qualified.

Always trust YOUR gut instincts. You are his mom. You are the only one that will advocate for his best interests. Don't rely on anyone else. As you have experienced, they don't always do what is right.

Now, don't feel sorry for yourself, or him. What you do now will put him on the right path. Educate yourself about PDD, educate yourself about his rights in school, and fight for his rights.

My Asperger's son is now 18, in college, and doing well. It can be done, but he needs you.

For school information, check out wrightslaw dot com. They were very helpful.

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I recommend you contact the Autism Society of America and find your local chapter online. They will be your best source of info on local therapists, support groups and drs. Often both meds and cognitive behavioral therapy are needed. I also suggest you find an advocate who can help you negotiate better supports and services from the school. You can find them through your Federally mandated Parent Training and Information agency - go to www.nichcy.org, click on State programs, click on your state and go to Parent Organizations.
hope things improve with the right supports. good luck

Katherine - posted on 05/16/2011

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1: BUY The Child with Special Needs by Dr. Stanley Greenspan. It's a big book. You'll want to get started reading right away.



2: READ articles for parents new to autism from Lisa Jo Rudy, the About.com guide to autism.



3: JOIN an online support group like Families of Children with Autism to meet and share with others who have been where you are.



4: DOWNLOAD a "100 Day Kit" from Autism Speaks for some advice for getting started with services.



5: VISIT our listing of Autism Spectrum Disorder links for more information and ideas.



http://specialchildren.about.com/od/auti...

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