Autism Spectrum Disorders (ASD) testing next week! anxious...

Discussion in 'General Parenting' started by Ktllc, Sep 27, 2012.

  1. Ktllc

    Ktllc New Member

    THE phone call I had been waiting for over 6 months now. The university hospital that specializes in Autism Spectrum Disorders (ASD) wants to see V next week. (I'm not sure if I can use the name of their program, it is different than ABA, but very respected and used in many countries).
    Now, I'm getting all nervous. It's kind of stupid: no matter what the results are, our lives won't really change.
    V will be the same he has always been.
    School is likely to be unaffected for now since things are goind pretty good. The teacher is doing all the accomodations he needs even though he has no IEP.
    I take the kids to the social group I helped put together (going tonight and so far a HUGE success for everyone involved :) ).
    But yet, I'm nervous. I try to breath but next week, at this time, I'll know for sure.
    If V is not on the spectrum, then we'll just have to keep doing what we do and live with the fact we might never know what is off with him.
    If he is on the spectrum, I know we'll have the support of this program in the future. V will be a client for life and they have LOTS of influence to help and make sure all community services are offered and used.
    husband is sure V will get the diagnosis. He tells me that the only reason V is not a bigger mess is that I've worked so much with him.
    I'm glad husband gives me so much credit, lol. But I don't feel this way. I feel beat, ready to give up. (whatever that means).
    Phew.... a few more days and it will be over!
    I'm glad we are going to the mountain the day following the evaluation. It will help all of us process the results and escape a bit.
  2. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm glad you will have some sort of answer in the next week. It is great that the school is working so hard with him even though he has no iep. I think it is great husband recognizes all you do. I'm sorry you are feeling so worn out. I so know that feeling. Sending hugs your way.
  3. TerryJ2

    TerryJ2 Well-Known Member

    I know the feeling! The anticipation, excitement, and dread, all rolled into one.
    And then, what?
    For me, it validated what I'd known all along.
    And even if it wasn't 100% accurate, it gave me a starting place, and tools to work with.

    I assume that the test giver will observe your difficult child as well? IOW, how long your son takes to move through certain sections of the test, how literal he is, how anxious he is, etc? There can be a great deal of subjective opinion and no real, sure way to tell. So many syndomes have so many overlapping qualities.

    Anyway, I know how you feel. Try to make it through the weekend and have some fun if you can.
  4. TeDo

    TeDo Guest

    I know the "torn" emotions you're feeling. You're doing a great job with V and I think your husband is right, you've made a HUGE difference in V's life. I know things are going well in school now .... but that is NOW with a teacher that is willing to do what needs to be done. I wouldn't count on that happening a second time, at least not consecutively. I hope your case is the exception but I wouldn't hold my breath. If you do get the Autism Spectrum Disorders (ASD) diagnosis, I would start the IEP process so that everything that is being done that IS working, continues when he no longer has this particular teacher. If it's working that well, it should be written in detail in cement (LOL) for others to follow. That will help V in the long run.

    Keep taking deep breaths. I know its a huge deal but no matter what happens, you know V and V has YOU in his corner. Nothing will change that.
  5. Malika

    Malika Well-Known Member

    I think you are in need of a holiday :) And it's great you are going to have one.
    It will be good to know, of course. Things will start to fall into place once you do. I have a feeling V may even fall outside the established parameters for Autism Spectrum Disorders (ASD), even though he seems to be on the spectrum from your description, but what do I know! I agree that it will probably be helpful to have an IEP.
    You are walking a road less travelled having a child with special needs, possibly two. This is fine as long as one accepts it - and accepting it is the battle, of course. I wonder if you do accept it in your heart? I think I still fairly regularly want J to be "normal", although some aspects I have stopped struggling with. I guess it's a long journey. And frankly no-one could be more committed or engaged than you.
    So.... let us know how it goes. :)
  6. buddy

    buddy New Member

    Oh wow that is big, it was all just a some day thing until now! I think your attitude is great and it is natural to feel so torn. You have been supermom, super advocate and super supporter for your kids. V will do great in any event. I would love if they at least said he just meets criteria so you can get all that great support they offer. Not that I want it for him, for sure I dont.....I remember falling apart when it was in black and white even though I could say he was autistic-like for over a year. Just that I'd like the support for you with how limited you have found many of the options there.

    waiting to hear..................big hug
  7. Liahona

    Liahona Guest

    It comes as a shock even if you've been expecting it. Its the difference between an event actually happening and the planning for it to happen. Like when a hurricane hits; you plan and prepare and then you have to go through the actual experience. Emotionally it's the same thing.
  8. lovelyboy

    lovelyboy Member

    I remember that you were talking about this for a while now! At last it can happen and get done!
    This is such a confusing and stressfull time!
    I really do hope they can give you immediate results! I hate waiting for results!
    You are blessed having a teacher who accomodates him! If you read my recent post....this is what can happen when the teacher doesnt want to accomodate!
    Give little one big hugs!!!!! Thinking of you!
  9. Ktllc

    Ktllc New Member

    I will have the results same day. And I am so thankful for it.
    It is a whole day deal. This program was suggested by one of V's past behavior specialist.
    V has the Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis according to his current social worker, but she is not a Doctor so it does not really count as being official.
    But I just find it so confusing... One person says yes, the other says no.
    I think V must be borderline, and it will be interesting to see how the real pro of Autism Spectrum Disorders (ASD) untangle all of it.
  10. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Ktllc...I know you cant give us names but where is this coming out of? Chapel Hill, Durham, Raleigh?
  11. Ktllc

    Ktllc New Member

    Janet, it is in Charlotte. There use to be also a center in Chapel Hill, but because of budget cuts the center in Charlotte is now handling like 10 or 15 counties. That's also why the waiting is so long. It is part of the University. You did mention the program in one of your recent replies ;), you just had a slightly wrong spelling. You must now know what I'm talking about . lol
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Just a short note.

    At V's age, nobody can 100% diagnose a child so this would be more a working diagnosis. Even the best places can be wrong.

    My son's neuropsychologist had been at Mayo for ten years and he told me, in an honest way, "We make mistakes ALL THE TIME, at Mayo. Because there are no blood tests, anyone can be wrong."

    This is not V's last and definitive diagnosis, but it sounds like a good place to start. Our difficult children usually have a loooooooong diagnostic process and the older the child is the easier it is to diagnose. The younger they are, the harder it is.

    Good luck!!!!! :)