I've been pushing for.....

Discussion in 'General Parenting' started by timer lady, May 25, 2010.

  1. timer lady

    timer lady Queen of Hearts

    a serious consideration of the autistic spectrum/Aspeberger's/Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis for wm for years. wm fits the criteria to a tee.

    I've been brushed off for 5 maybe 6 years with the same story....this is all the Reactive Attachment Disorder (RAD) & PTSD with a bit ADHD & bipolar in the mix. Saying that, all of the interventions have failed miserably. psychiatrist told me many years back that the treatment wouldn't change ~ I was green enough then plus dealing with multiple crisis's with the tweedles to just swallow that statement.

    All this time I've been asking for a new neuropsychologist. Now that wm is approaching 16 this is finally being taken seriously. He will be 16 in early July & everyone is scrambling because of wm's inability to function out in the real world. The boy doesn't have a clue.

    I have a meeting a week from this coming Friday to address this issue.

    Interestingly enough, while searching for a different therapist for tweedle dum, I ran into a therapist who worked with him in Residential Treatment Center (RTC) ~ she stated she didn't have the background to work with autistic/Asperger's children.

    I'll push for an answer as wm continues to struggle on a daily basis. In comparison, his twin is very high functioning even tho she requires constant supervision & a boatload of services.

    Does that sound cynical or just plain ugly? Sorry.
    Last edited: May 25, 2010
  2. Lori4ever

    Lori4ever New Member

    Doesn't sound ugly at all. Sounds like a mother who continues to search for the right answers. This isnever easy, and there are too many doctors who will never believe that "mother knows best". That in itself is sad, I hope you do get a new DTOC for WM, it is important at his age, it makes all the difference in the world to have one with an open mind. I hope you manage to get an answer for both of you.
  3. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I agree with Lori it doesn't sound ugly at all. You continue to advocate for your children and I'm glad they are finally taking seriously the idea of another neuropsychologist. Hope all goes well in your search for a new therapist for wm.
  4. crazymama30

    crazymama30 Active Member

    It does not sound ugly, it sounds honest and realistic. You are amazing, you struggle with so many things with your own health, and still manage to fight for you kids. I hope that a new neuropsychologist could help wm get the interventions he needs so he can grow as much as kt has.
  5. JJJ

    JJJ Active Member

    It sounds very realistic. We were lucky with Eeyore. He had been diagnosed Conduct Disorder at 5 years old. They were recommending we disrupt the adoption. We tried this therapy, that intervention and those medications for years. I kept insisting that this child wasn't mean - he was frightened and confused and what we were doing wasn't working. They just kept telling me there was little hope for him so they didn't expect anything to really work. Then our state DHS funded a study for young children who had multiple psychiatric diagnosis including one of the severe ones but had not made progress on at least 2 medications and treatment. They discovered that Eeyore was Pervasive Developmental Disorder (PDD)-not otherwise specified. What a difference it made in how people treated him. No longer did teachers and tdocs attempt to treat him as a boy who was willfully misbehaving, but rather a child who had significant delays in the skills he needed.

    If wm is on the spectrum, that could explain alot about his relative lack of progress. The therapies are different.
  6. DaisyFace

    DaisyFace Love me...Love me not


    I think your comments are neither cynical nor ugly--but are unfortunately a sad truth...

    and maybe a truth that didn't have to be--if only there were more services and interventions for troubled kids when they are very, very young. Instead, too many families are brushed off, dismissed, ignored and by the time the parents "wise up" as to what they need to look for and ask for....soooo much time has past. It's not fair.

    I hope that you finally get the correct services for wm.
  7. DDD

    DDD Well-Known Member

    I really admire your tenacity....and, of course, know your motives are pure as snow. Although I have not had the intense dealings with "the system" I'm wondering if the change in diagnosis (shouldit happen) might alter the pool of funding. Yes I am a bit cynical.If there is anyone you truly trust perhaps you might inquire about the impact of a changing Dxor the addition of another diagnosis.? With budget reductions I would hate to see Wm identified witha problem that often isn't pursued aggressively in teens and adults.Fingers crossed for the best outcome. DDD
  8. smallworld

    smallworld Moderator

    Linda, my son has struggled for years in school. He's very bright, but couldn't do the work. It took sending him to an Residential Treatment Center (RTC) in Utah to discover that he has characteristics of a "processing disorder" that no one picked up on, including every teacher whose classroom he's been in and every neuropsychologist we've ever had him tested by. We just completed another round of neuropsychologist testing to nail down these processing deficits and are awaiting results. I think our complicated kids take a long time to figure out, and it takes us parents to keep pushing until there are answers.
  9. nvts

    nvts Active Member

    Hey Linda! Ggf1 JUST got out of the psychiatric hospital. yesterday. He's been diagnosis'd Aspergers basically since he was 5 years old. At the family meeting, it turned out that although I've been trucking him back and forth to therapy for SIX years, put him in a day treatment program that assured me that he was receiving appropriate therapeutic interventions, and nearly doing a voluntary hospitalization for 3 mos., he's been getting the completely wrong type of therapy.

    Don't buy into anyone telling you that there's no difference in the various interventions out there. It's maddening that we have to constantly reinvent the wheel for each one of our children!

    Keep fighting the good fight!

  10. SearchingForRainbows

    SearchingForRainbows Active Member


    You're a fantastic warrior mom!!! Count me in as another one who doesn't think your comments are ugly. You're doing everything you can to help your son. If he isn't able to function in the "real" world at almost 16, you would think his therapist, psychiatrist, etc... would realize that there is a very great possibility that something else is going on. It is such a struggle to get a correct diagnosis!!!

    I truly believe parents know more than professionals when it comes to really understanding their children and knowing when something about a diagnosis just isn't quite right. I hope you get another neuropsychologist evaluation ASAP!!! SFR