I am going absolutly INSANE with this new info...

Discussion in 'General Parenting' started by bzymomto4, Jan 11, 2008.

  1. bzymomto4

    bzymomto4 New Member

    It's truly going to be the death of me. I have been working on my 16 yr old's problem for at least 8 years; with wishy washy answers as to the problem or causes over 3 evaluations he has consistantly had exceptionally slow processing, problems in executive funtion - why I ask - no one knows the answers. faulty wiring they say- but with no definition. In the mean time school has become an adversary and at the end of his high school career I could just screem. I don't think I have the energy to learn all I need to about aspergers. He is set up for a neuropsychologist evaluation in Feb. I am more anxious about this than I am about my sky high blood pressure and the tumor in my stomach. After visiting this board I looked at aspergers, something I never felt I had reason to before. I was so shocked that his babyhood, toddlerhood,etc could be so well described. Insted of having one or two characteristics, he was only missing one or 2 charachterisitics (he has very early speech - 9 months old and on time or early gross moter milestones- sat independantly at 4 months) by kindergarten he had obvious comunication dificulties which have evolved in expression over time (dispite having a vocabulary IQ in the 93%) I had a baby who slept in until 9:30 and I thought I was blessed. I have another one of those in my 5 yr old. As a young teen his sleep disorder became so severe he would sleep for 18 hours a day and be groggy for hours after awakening. This condition has only been partially corrected with surgery. At 16 he still can't catch a baseball or a football, and gets angry if you ask him to join in and play. He also has no confidence on his bike. He got a nice expensive bike when he was 7. He never rode it. Now he walks to school and I had offered to get him a nice bike to ride - he told me that was stupid, walking is much faster. His recent psychiatric test showed no psychpoathology,no evidence of bipolar disorder despite his current diagnosis, lack of internal resources, and an inability to relate to human emotion. In a picture of two people hugging he could not think of anything they could possibly doing or how they were feeling. He was given a diagnosis of adhd. I am so angry right now that the professions we have trusted haven't saw fit to recommend a more in depth evaluation with someone more qualified. I have worked so hard to always make everything better - feeling like it was a uphill fight. Right now I feel like it is quite possible the answers that have been before us all along - but everyone doubts it. Please pray that I will find a way for my kids to get the skills they need to find a satisfiying way of life.
  2. nvts

    nvts Active Member

    Hi! First of all, ADHD is a blanket in this case. I know and understand your frustration.

    What you need to do is see the neuropsychologist in Feb. and explain what's gone on over the years. Just because he's 16 doesn't mean he can't be helped.

    There are things you can do now. Check with your local Department of Disabilities for Social Skills Classes. See if there are any local organizations for autism or "Autism Spectrum Disorders (ASD)'s" (autistic spectrum disorders). Some will start him prior to an official diagnosis, others will have you wait. Either way, it will be a little more info. that will help you once he has a diagnosis.

    For quicky social skills ideas, check on Carol Gray's books (they're kind of basic for you, but it can give you ground to start with). She writes Social Stories, that basically allow you to write a scripted scenario that he may be faced with.

    Last, breathe. You've been researching for over 8 years. You're almost where you need to be. What's 1 more month?

    Thinking of you and yours,

  3. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Hi bzy,

    sorry that you don't any answers - well, any good answers that is. Make sure you have a good history writtten down to take to his appointment in February. In the meantime, try not to worry so much about the appointment itself. Offer them your research and a good history of our son. I will pray along with you that you find some insights into helping your son succeed.

  4. DDD

    DDD Well-Known Member

    I understand. I completely understand. The only difference between us, I think, is that I came up with diagnosis and then educated
    the "educators". My boy is 17 and in the top range of function
    for Aspergers. He is aware of his deficits and he is happy to
    have the diagnosis in lieu of some "far out" concepts that were
    floated before.

    You can hang in there and do it. I have been "advocating" since
    the l960's when his Mom (the last of my children) was not able to
    function appropriately. She is in her 40's and still does not
    function well. It is exhausting, frustrating and life absorbing
    BUT I'm sure if you have been at the task for all those years
    you will muster the tenacity to follow the task through.

    Welcome. DDD

    Whoops! I wrote "I came up with the diagnosis". NOT alone, I didn't.
    The CD family helped guide me along so I can't take all the credit.
  5. SRL

    SRL Active Member

    I'm sorry to hear it's taken this long. A few years back there was an article in a medical journal reporting survey results that more parents got the link to Autism Spectrum Disorders (ASD)'s from outside sources such as other parents and schools than from medical profession. Since then they've really stepped it up and have improved, but there are a lot of misdiagnosed older kids out there.
  6. Marguerite

    Marguerite Active Member

    Hang in there. You are almost there. breathe.

    If this is Asperger's, it can be very good news for your son. Keep him informed and in the loop. Especially at this age - and together, read stuff by Tony Attwood. You will find his name like a rash all over Google, on the topic of Asperger's.

    For my kids, the diagnosis has proved to be a release from burden and a celebration of themselves as unique and wonderful. Yes, there are difficulties, but with support they are overcoming these. The special talents and deep interests can open doors for them into other areas they need to work on. There are some wonderful traits - loyalty, honesty, obedience - which may need a bit of initial steering but can work like an autopilot once they are 'calibrated' to the social norms in those areas.

    Also, Aspie kids tend to 'find' other Aspie kids as friends. The day you have a roomful of Aspies who know they are and celebrate it, is a day you will know true delight. Exhaustion too maybe, but it is FUN! And it is wonderful when you see your children happy with their friends.

    Yes, there are anxious times, but as they get older they also get more capable and independent. It just takes longer, so you need to ignore their chronological age. I'm in this position now - trying to get two adult Aspies into the final stages of independence - and I still see increasing maturity, all the time. I estimate that my 21 year old is socially about 16/17, her older brother about 19.

    Chances are, you've been doing all the right things for some time, so take some time out now to just take a deep breath before you charge back into the fray.

  7. DDD

    DDD Well-Known Member

    Another really good thing about AS is that, as a rule, the
    Asperger personality respects rules and therefore is far less
    likely to break the law or get into trouble. The interpretation
    of circumstances, however, is an awesome challenge. DDD
  8. susiestar

    susiestar Roll With It

    I totally understand your ire at the "professionals" who left you hanging in the wind. We ended up educating teachers and even doctors about aspergers (try taking an aspie in for any medical testing - IF they cooperate they you can have days or weeks of meltdowns over it later).

    Aspergers is NOT the end of the world. Your son can still go on and achieve, you just have to learn what he needs. You can help him find what he needs, and there is quite a bit of time before he turns 18 for you to take him in for help.

    You might try occupational therapy for sensory issues. Most Aspies have some, don't like textures, or clothes, or tags or foods or whatever because how they hit on their senses. Even though 16 is kind of late, we did find brushing helped our difficult child (it was ordered for his little bro, but we tried it on all the kids thinking it couldn't hurt - WOW! It really helped us. He became more tolerant.

    Take a deep breath, at least you have an answer finally. Some parents wait 40 or more years with-o finding the answers. Take time to process the anger, realize it is justified, and then work to help your son. Try reading The Explosive Child, by Ross Greene, and anything by Tony Attwood.

    Sending hugs,

  9. bzymomto4

    bzymomto4 New Member

    Thank you for the words of encouragement and bits of advice. I finally have the school taking me more seriously after we sent everyone of his teachers, guidence counslers,Principle & assistants, sped teacher and director a complete wrap up on the past 8 yrs. An overview what was realistically possible and what based on documented testing could never happen. An email to all of the professionals involved or who need to be involved all at once. We got the sped meeting granted we had previously been denied -within the hour(although not on the calender yet). I'm not sure if it will fall before or after my neuro psychiatric evaluation , but I am prepaing with all that I have. As far as the neuropsychologist , they said I have already had so much done they really only have a few tests to add. But the office will come to school meetings and be the childs advocate as well. The Doctor was a previously trouble child who made the most of his opportunities in his 20's.(been there done that kind of kid) To me he sounds like he has a very practical approach to caring for the kids after the diagnosis. Lets hope.
  10. ML

    ML Guest

    Aspergers truly isn't the end of the world. I have thought that is what my son has for years but I have been receiving other diagnosis in the past that are now being ruled out (ie ADHD). It can look like so many other things, much scarier even. I thought he had BiPolar (BP) for a long time and still think he could develop it, but he doesn't currently meet all of the critera. The one thing that he has that looks like other stuff is sensory integration disorder.

    Enough about me.

    Hang in there and know that you have our support and and empathy.