it's official: Autism Spectrum Disorders (ASD) diagnosis for V

Discussion in 'General Parenting' started by Ktllc, Oct 4, 2012.

  1. Ktllc

    Ktllc New Member

    Just came back, my head is spinning.
    I'll post later, but wanted to let you guys know.
    I'm not surprised obviously. Just need time to process everything that has been said.
    Last edited: Oct 4, 2012
  2. TeDo

    TeDo Guest

    By all means, PLEASE fill us in when you can. I know I for one will be sitting on pins and needles waiting.
  3. Malika

    Malika Well-Known Member

    Wow, you must feel a mixture of feelings. Good to have some definitions at last.
    Please do post and tell us more when you're ready.
  4. Ktllc

    Ktllc New Member

    I had to edit my post: I used V's real name!
    I don't know how I feel, to be honest. Worried about the future? Releaved because we'll have access to more help? Is it real??
    Right now: he has a Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis and they are thinking there might be a genetic component. They are not sure about the genetic part, but some facial features made them think about William syndrome. The team said we maybe should see a genetician if we want to be sure. William syndrome comes with heart problems but V has no diagnosis heart issues... I will google it and probably talk with his pediatrician.
    I will receive a written report in a few weeks. They gave me a bunch of resources I can use for V.
    They think it is very important we work on his auditory issues and keep a close eye on his school progress. As soon as he starts falling behind: we need to test for specific learning disability.
    They are hoping that V will stay at Pervasive Developmental Disorder (PDD)-not otherwise specified with the help of therapy. But they did tell me that the gap might get bigger as he grow older and might end-up with high functioning autism. They see it a lot with kids like V who are diagnosis at a young age. We will re-evaluate in a few years as he will now be their client for life.
    When of his asset: he uses and understands facial expressions (at least on paper). it did not come easy, but he passed the test.
    His main weakness: he is a VERY concrete thinker. So we have to keep it in mind as we try to teach him new skills. He is also very rigid in his thinking and routine.
    He showed some big issues in what involved theory of mind. And it was all normed tests which compared him to what a typical 5 year old should understand. This explains why it is so hard for him to understand people and the world in general.
    He is atypical looking but definetely on the spectrum.
    They recommended a 504 plan for now as school is not much of an issue. But we need to get all those accomodation documented and in writing.
    I'm sure I'm forgetting a lot, but I'm going to try to give myself a break.
    I have been fighting for 5 years. The fight is not over but I wont have to do it in the dark anymore.
    I thank you all so much for giving me the strength, believing me and guiding me through all of it.
    You have been my biggest asset and give you all the biggest hug!
    We are heading to the mountain tomorrow and the kids will go on there first train ride! The train is taking us to a pumpkin patch and lots of treats. Some normalcy will do us good.
    I love you all.
  5. TerryJ2

    TerryJ2 Well-Known Member

    Many hugs, Ktllc.

    I had to look up Williams Syndrome. Sounds like you may have some genetic testing in your son's future.

    This is a good definition to get interventions.

    I know you are digesting all the info you received and will be working your way through in the days ahead. Eventually, it may leave you with-even more questions. Even so, it's going to be a great help.

    Many hugs for your sweet V. And have a great trip! Enjoy the train ride and let us know how it goes.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I don't know how to say this and not sound silly...but Autism Spectrum Disorders (ASD) isn't as bad as you think. My son was dxd. first (WHEN he finally got dxd...with Pervasive Developmental Disorder (PDD)-not otherwise specified). The more interventions you can get, the better. Also, believe it or not, as Autism Spectrum Disorders (ASD) kids age, they do not tend to have severe behavioral issues and they do tend to improve. Many Autism Spectrum Disorders (ASD) kids NEVER have behavioral issues. They are wired differently and, yes, concrete thinkers who dislike change and usually have incredibly hard times understanding people, but I've seen huge improvements in my son on all fronts. And I've seen improvements in many Autism Spectrum Disorders (ASD) kids. They are all different too. Like V, Sonic can recognize facial expressions, and that alone is a good strength. People communicate with those expressions.

    Sonic had a genetics test to rule out any reason for his Autism Spectrum Disorders (ASD). The tests all came back negative, but we were still glad that we did the test. It's just a blood test. A few things they looked for are Prader-Wille Syndrome and Fragile X Syndrome.
  7. buddy

    buddy New Member

    So relieved for you to just be able to tell people and not have to explain every tiny thing. You have fought a hard fight. Yes, its quite a ride but you are a mom cut out for this for sure. V has great parents who love him for all he is. I think the future is bright for you!
  8. TeDo

    TeDo Guest

    Yes, it's a "shock to the system" but it is also an ANSWER to all the why's. You KNOW what you're dealing with (well, you've "known" for a while but now it's official) and MWM is right. There is so much that IS known to work that with V being so young, the possibilities are endless as long as services to fill in the learning gaps get started now and continue as long as he needs them. I wish I'd have known when my kids were 5 what I know now......yea, I love to dream of what life could have been like and what could have been avoided.

    {{{{HUGS}}}} to you and V.
  9. Malika

    Malika Well-Known Member

    It's very good you have some clarity and answers, accurate information, guidance and a way forward. There will be a period of shock or something like shock as you come to terms with it too, I imagine. People here have given you a reassuring vision of the future for V. With all the help and therapy and understanding available from such a young age, the future IS bright. And with your continuing commitment and care, of course!
    Not that I'm jealous but... I would love such a service giving precise information for J :)
    Hugs. Enjoy your mountain break!
  10. lovelyboy

    lovelyboy Member

    Many hugs coming your way!
    All I can say is just hang on and do what ever intervention you can! He is still young!
    I experienced that there will come a day, when you will just see your son again as being V and not V who has Autism Spectrum Disorders (ASD)!
    And I also saw with the help of some medications, some behaviour can improve ass well.
    Hope you have a great trip!
  11. Bunny

    Bunny Guest

    While I understand that having an official diagnosis for him can be overwhelming, it must come as a relief that now you have answers that you didn't have before and you can have more services open up for him. I'm sorry that this is the answer, but now you can move forward with him. Good luck!