newly diagnosed, now what

Re: newly diagnosed, now what

• Estrayer1

  February 2013

  I'm so sorry.  We just received our official diagnosis in December that our daughter is moderate to severely autistic too.  I'm not exactly sure where you are in the process to help you.  In NC we have a program funded by the state that helps families get services for children with special needs until their 3rd birthday.  Through them we've had several evaluations and examinations and they've helped us get all kinds of therapy for her.  They helped me get referrals to a geneticist and a neurologist.  They also helped me get her enrolled in a local school that specializes in special needs children. 

  I'm thinking your next step, if you aren't already doing this is to find out what kinds of therapy he's going to need.  Early intervention is soooo important.  Let me know if there's anything else I can help you with. 

   

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• macchiatto member

  February 2013

  I'm curious; is there something else you wish they would say instead? I think people can have a wide range of reactions to a diagnosis and "how are you dealing with it?" sounds like they might be just trying to gauge where you are so they can respond appropriately. It's hard though when you're surrounded by people who just don't get it.
  

  I don't know all the options re where to go next since we dealt with a cluster of mild Dx and not ASD (though that was something they wanted to rule out); for us, we got treatment recommendations first through Early Intervention and then through the developmental pediatrician when we finally got in with her. His EI has also been really valuable as a service coordinator and helping us figure out what all our options are.
  

  fraternal twin boys born january 2009

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• smllnuggett

  February 2013

  We've been doing EIP since Sept. They advised we get him tested. He's been getting speech, ot, n a teacher since Sept. But as u said EIP ends at 3. Thinking doing out patient w/place diagnosed him. In nj, preschool is provided free for "special needs". So I'm not too worried there.
  
  I guess I just feel like were in limbo right now. We have a hearing test scheduled for Apr n need to coordinate services between both EIP n children's special.
  
  Has anyone done the genetic testing? If so, what age or immediately after dx?

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• macchiatto member

  February 2013

  Our son qualified to keep his Early Interventionist (just her, not the other service providers he was getting through EI) till he turns 5. It's covered by the Dept of Disabilities and Special Needs. She still comes 1x/wk for family training and still provides service coordination, which has been great. You might ask if that's a possibility where you live?
  Also, is he getting evaluated through the school system? My son was at about 2y10m so they had his IEP in place by the time he turned 3 and he started getting SN itinerant teacher, OT and PT through them. (Or does the SN preschool you mentioned include the therapies?) If he had gotten the ASD Dx he would have also been placed on the wait list for ABA.
  

  fraternal twin boys born january 2009

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• smllnuggett

  February 2013

  I understand that this is most likely a lifetime diagnosis. It's just the ppl asking r his therapists n teachers who deal with this issue on a daily basis. But the way they ask it sounds like he's been given a terminal illness. I often discussed their feelings about his delays n kept them in the loop about testing. So they knew that I acknowledged and accepted there was something special about him. I had my hopes deep down that they were wrong, but I knew deep, deep down they were right.

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• snydermom member

  February 2013

  I am so glad you asked this. I am in the same boat as you and I felt horrible about not knowing what to do. It seems like everyone else I spoke with knew exactly what was next. My 4 year old was diagnosed with Aspergers/ Autism the neurologist says he is both. I still don't understand that seeing as Aspergers is a high funtioning form of Autism but we still don't the "what next/now answer". We been evaluated by our local PPCD program through the public school district and still waiting for answers. So I am with you... what now

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• snydermom member

  February 2013

  Auntie
  
  His developemental pedi says that he is Autistic. It was our neurologist she referred us to that had said both dx's.
  
  He had his evaluation with the school Jan 14th. The stated they had 60 days to get us a report. I have been told that due to budget cuts they may not be accepting any new students into the ppcd program. However then I fall into he unknown of what can I do for him because we took him out of a mainstream pre school based on the pedi's recommendation.
  
  Should I be looking into other options just in case the school doesn't accept new students? I was told if they don't, to go to the school board and fight it. I am so overwhelmed and confused. We have another appt wth our neurologist on Thursday and I am hoping to get more answers about what I need to be doing for him. What therapy does he need if the school doesn't accept him, do I find a behavior therapist which is partly why we had to pull him from pre k, he has major meltdowns and hurts himself etc
  
  Sorry I am rambling but I seem to get better advice from you ladies seeing as I have no personal friends with the knowledge or experience with this.

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• snydermom member

  February 2013

  Thanks for all that advice. I didn't want to jump to conclusions of course until we heard back from school district. I actually just got the call for our first IEP meeting next week. Never had one of these so I am believing of course this will give me answers to all these questions I have been asking.
  
  I will also be getting the book you have recommended. I am all for as many resources I can get to use.
  
  Again thanks so much for all your input.

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• smllnuggett

  March 2013

  That's also given me some help!! Thanks so much. I still feel a lil lost on the next step which is overwhelming on a personal note. I'm the type of person that needs to know n b prepared in advance!! But we meet with the school district next wk, n I'm prepared to fight if I need to. I know by law, they must accept him into the program at no cost or provide services at no cost. Now I gotta get things in order for meeting at school.

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