Working on an Aspie diagnosis and the school is fighting me!!

Discussion in 'General Parenting' started by Audrey, Oct 14, 2009.

  1. Audrey

    Audrey New Member

    difficult child is being evaluated by a neuropsychologist. I met with Dr. on Monday and after two hour conversation, he thinks I'm dealing with asperger's. I knew that two years ago...but it's nice to hear from a pro.

    However, the school psychiatric and guidance counselor are fighting me on the idea of aspies. They think, that because difficult child is "gifted" and "fairly social for someone like him" that he has to be something else and they want him medicated.

    I'm so mad at them!!!!

    He has impulse control issues, yes. He has Sensory Integration Disorder (SID) issues...yes. He's brilliant...yes. He has a sophisticated, posh way of talking....they think this isn't aspies.

    The neuropsychologist thinks they're idiots...

    However, the school is who I have to deal with for IEP in the future. His KG teacher is amazingly supportive. It's the psychiatric pros at the school I'll not handle well!!!

    Small vent...thanks.
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    This is my advice.

    1/Do NOT medicate him because the school wants you to. That is insane. They don't exactly hire the best and brightest psychologists and a psychologist from a SD wouldn't know Aspergers if it hit him in the face, for the most part. No school can insist you medicate a child. By the way, you described an Aspie to the letter. My son uses long, big words and sounds like a He can be sociable, but he's quirky. He had a lot of help to come as far as he has (he's sixteen), but we had to really fight HARD.

    2/Trust the neuropsychologist and insist on interventions. Call your state dept. of public education and get the name of the free parent advocate in your area. Every area has one and the SD won't tell you about them because they don't WANT somebody at IEP meetings with you who actually know when they are breaking the law or taking you for a ride.

    3/If necessary ask the State Dept. of Public Ed's personal advocate to help you.

    I'm so sorry you are going through that. It's insane. We had to fight the good fight ourselves to get the right services for our Autism Spectrum Disorders (ASD) son. The school was beyond clueless and tried to argue with us, but he is our fourth child and we already knew what to do to get his needs met.

    By the way, welcome to the board but sorry you have to be here :tongue:
  3. Audrey

    Audrey New Member

    Thanks for the reply!
    I've posted a couple little times before....

    I'm also a former peds nurse and worked with a psychiatric MD for several years. I'm no dummy when it comes to medications etc....

    I had no idea that there were advocates for the kids though. That's great information and I'll use it!

    I'm a mom of 4 kids. All amazing. The baby is the difficult child and we're ready for him, but not feeling quite "young" enough to deal, Know what I mean??

    Our kids go from 21 to 5. It's a trip.
  4. Marguerite

    Marguerite Active Member

    Even with an Aspie diagnosis, medications can sometimes help. But I agree - only if the specialist YOU see, says that they're worth a try. Not on the school's say-so.

    I've been appalled at how THICK school psychs can be sometimes. difficult child 3's school counsellor stood on the school steps with me, looking down over the playground at break time, watching difficult child 3 walking around the edge of the basketball court, totally oblivious. But because he was wearing school uniform (like all the others) he blended in. The school counsellor said, "It's wonderful to see that difficult child 3 is no longer autistic!"

    I was appalled and reminded her that autism is life-long. "But he's talking so well now, his language is now within normal limits. He's lost the diagnosis."
    I said, "Nobody ever loses the diagnosis. As difficult child 3 himself said, he's getting better at preternding to be normal. But he will always have to work at it, in order to be able to blend in. That effort needs to be acknowledge and valued, or he will always wonder why it's harder for him and resentment will build."

    Sometimes I just want to smack them. The school counsellors, I mean.

  5. mstang67chic

    mstang67chic Going Green

    Schools are notorious for fighting diagnosis's....partly because they know it will cost them money and partly because they are idjits. Mine will, in an IEP meeting, tell me that difficult child hasn't yet met his goals and then basically berate ME because he's not putting much effort into things. How am I supposed to MAKE him meet his goals??? :slap: Yes, we can encourage him, offer support, help when needed and appropriate but it's still on him. Stooooopid. Get the advocate or at the very least, look up the special education laws in your state. If you have questions about that aspect, post in the Special Education forum and you should get some great ideas.

    So does this mean that if I get off my fat hiney and lose this weight, I won't have hypothyroidism anymore??? OMG.
  6. Marguerite

    Marguerite Active Member

    This is going to sound at times like I'm getting off topic, but I'm not.

    What really got me about that idiotic "he's no longer autistic" statement, was it was expressed in a way that wouldn't let me object. If I challenged it, then I was clearly trying to find something wrong with my child (which I had been publicly accused of by a local doctor who I found was badmouthing me around town) and if I let it pass then I legitimized it. Since I wouldn't win either way, I figured I would at least challenge it (my reputation was mud anyway, nothing left to lose).

    It's acommon tactic in people who don't want to deal with unpleasant realities; deny them in such a way that makes YOU the ogre if you insist on rubbing the person's nose in it. For example, I live with physical disability. The actual mechanism of my health problems are difficult to understand and some doctors just can't be bothered. So when people ask me what's wrong, I tend to summarise quickly and move on ("It's a bit like MS but not progressing much"). But the occasional person who I realise is simply not interested in caring at any depth, will occasionally greet me with, "It's wonderful to see you looking so well!"
    I might be feeling like something the cat dragged in, but I've just been told I LOOK wonderful, so clearly how I feel is totally unimportant and devalued. Any attempt to say I feel ghastly will therefore be taken as the equivalent to calling them liars and be obvious evidence that I'm a whingeing malingerer. So I grit my teeth and say something like, "Well, I'm glad I LOOK good. It's good to know..." and leave it at that. Unless I really do feel good as well, in which case I smile, acknowledge it and thank them.

    Being told you look well is not the same as being told you look good. Being told you look well, when general knowledge is that you have a chronic condition which has pretty much wiped out any chance of a career, is similar to being told that you're relishing disability and probably making it all up.

    Then there are the people (often professional support services and diagnosticians) who try to link my disability to the kids' Pervasive Developmental Disorder (PDD). They also link my physical disability to some imagined mental impairment. I've even had people talk slowly and loudly to me. When I meet these people professionally as people I have to consult with for my kids, I have a great deal of difficulty. Interestingly, I meet most of these people via Dept of Ed.

    You have to develop a thick skin and also use any anger you feel to fuel your drive for justice for your kids. Smile, be polite, but do not take any of these sort of attitudes on board. If you are sufficiently close enough to the people expressing them, then tell them that it hurts and why. But be prepared to walk away from friendships where these attitudes seem to prevail; they are not healthy for you and will eventually drag you down and damage your own confidence.

    When I became disabled, I lost some friends. I also found others. The same thing happens when you discover your child is not perfect after all. Some people will find it too challenging, but will eventually come back. Some may never come back. Those you lose permanently - well, the sooner you can move on into more valuable and sincere relationships, the better. But it hurts.

    And when you find these attitudes in people you have to deal with professionally, try to handle it with class. Humour works well, it can defuse a great deal of potential hostility. But inside yourself, learn to detach and not take it personally. Instead, let your anger find a productive outlet and use it positively. Channel it into letters, summaries, phone calls, insistence on good diagnosis. Action. Calm, confident, effective. And follow-through.

    You will win if you do this. You will achieve more than if you had sat back and not tried. Plus your children watch, and learn from your example. Your children learn that you are fightring for them because you value them and consider the battle worthewhile. They also learn the effective, appropriate battlnig techniques and as they move towards independence and adulthood, they begin to follow your example in other ways.

    Win-win-win. On so many fronts.

    So whenever you meet idiots who are trying to rewrite the diagnostic criteria but don't have the medical cred to do so, then remember this and use it. Becme a bigger expert than them (not difficult!) and remember - every battle you take on and win, makes you vastly stronger.

  7. Audrey

    Audrey New Member

    I'm grateful that his KG teacher is willing to do whatever the clinicians decide is best. She has a background in Learning Support. It's the silly school psychologist that doesn't have a clue.

    The neuropsychologist I had the intake with was shocked at her lack of understanding and knowledge...he helped to train her!
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Teachers are educators, even if they are Special Education teachers. Many don't really know that much about disorders (I know this first hand). Some don't update their training. When I told my son's Special Education teacher that he had Pervasive Developmental Disorder (PDD)-not otherwise specified, she looked at me with a blank face and asked, "What's Pervasive Developmental Disorder (PDD)-not otherwise specified? I never heard of that before."

    I've had countless teachers ask me why L. isn't on medications for ADHD, which he doesn't have.

    I have never met a school counselor or psychologist who seems to know a thing about disabilities. Either that or it's what smallmom said...they don't want to admit it because they don't want to pay for the child's services under FAPE. And many parents get intimidated and don't know there are parent advocates and that we can even take it to court if the school and parents differ. There is mediation.

    I would have taken anyone who said "I guess he's not autistic anymore" away from my son. That person would not be a part of the team or allowed to help again because it's NOT helpful if the people who are supposed to help don't know squat. Fortunately, we do have the choice of going to the Dept. of Public Education and having them step in. But most parents don't know that or are afraid to make waves, which I never understood. If a child is not being helped, so what if you make waves? They will NOT take it out on your child, trust me. In fact, if they know you are watching them with a critical eye they tend to treat your child better than the kids of the parents who don't seem to care or who are afraid of them.The last thing they want is their school district investigated. The Dept. of Public Education decides how much $$$ each district gets. It's a bad thing for a SD to get on the dark side of the DPI.

    Marg, truly, if we would have smiled, been polite and just written letters, we would have gotten nowhere. Unfortunately, we had to do tough love with the SD. That doesn't mean we yelled at them. But we did quietly go over their heads because they were not cooperating and L. was falling farther and farther behind and we didn't have time to butter them up and hope for the best. We were pretty desperate. Our interventions are from school and we needed them for him. In fact, we needed him to be bussed to a different school altogether as our district had no way to meet his needs. His dad and I felt it was urgent, and we called the DPI. After talking to the Special Education Advocate, he called the school district. Can't tell you how fast L. got all his interventions, the school of our choosing, and a bus ride door-to-door. They called us the very next day, telling us they were going to do what we wanted. They didn't put it that way, of course, and we didn't throw it in their faces. But that's what happened.

    Also, advocates are great although they make educator's nervous. But that's because they know the state rules and make them follow the law to the letter. Yes, they will cheat if we as parents allow it. And most parents don't know every law.
    Last edited: Oct 15, 2009