Friday, February 3, 2012

"I'm High-Functioning, Except When I'm Not"

I read this quote recently on a blog. I can't find the blog in question, or I'd link it.  I thought it was the perfect description of my son, E.  Yesterday was a slog, dealing with all the different aspects of the "when I'm not" half.

The entire day revolved around E. and autism.  It was a day when all I could think about was how very much I hate autism and the problems it causes.

The day kicked off at 7:30 am with a manifestation hearing at the school.  This was the result of a suspension following E. kicking his one-on-one para during a meltdown.  We are currently working with his therapist and the wraparound service to try to get him out of the public school system and into a therapeutic setting like this one.  We were hoping to have the opportunity to address that yesterday, but it had to be tabled for another meeting next month.  Instead, I was presented with yet another "incentive plan" to try to entice E. to hold it together for an entire day.  Mr. R. presented it proudly; it was clearly his baby.  This time it was Magic cards.  I'm sure it will work well for a little while, but these things don't last.

I always feel like they are completely missing the point.  It's not that he doesn't want to do well; he does.  It's that he simply doesn't want to be at school and my third period, it doesn't matter what you offer him.  Nothing compares to that need to leave.  Offer him whatever you want, offer him diamonds.  It doesn't matter.

The meeting about placement will be on March 1.  More work and research to do before then.  I've already put together a list about what CHILD can offer that the school district can't.  Guess what?  It's about a mile long.

The next meeting of the day was with Carrie, E.'s therapist.  The hubby and I attended this one (E. was allowed back at school thanks to the results of the manifestation hearing).  We discussed what to do next and where to go from here.  We agreed that intensive in-home support was needed.  We will be asking wraparound to help us get set up with a program called "Imagine."  I can't find the program she's asking about, but hopefully Aja and Jody are familiar with it.  It uses the collaborative problem solving model.

One of the concerns raised by wraparound was that "autism" is not listed as a diagnosis on E.'s IEP.  Asperger's is, as well as the rest of the alphabet soup, but apparently the state considers "autism" it's own separate category.  While Aja thought we should get his class changed, Carrie was concerned that by changing the class we would remove "multiple health impaired" and actually cause problems.  I'm rather confused by this -- the information is conflicting.  I'm also not sure I'm understanding this right:  Can a child only have one class?  Does "autism" cancel out "multiple health impaired"?  What about the alphabet soup children of the world?

We talked about what the future would look like without a more therapeutic placement.  It's an ugly picture.  I believe it would likely involve E. dropping out in the 10th or 11th grade.  If the aggression doesn't get under control or continues to get worse as E. gets holder, Carrie raised the possibility of a future spent in residential treatment.  This was the first time it was said out loud, and it terrified me.  It's bleak.

Next stop for the day was the Children's Autism Center for E.'s appointment with the nurse practitioner who does his prescribing.  We are still trying to nail down the sleeping component.  His trazodone was increased to 75 mg at bedtime.  We are also adding a new medication to the mix:  Intuniv.  We'll see how it goes.

By the time I got home, I was completely exhausted.  I felt hopeless, helpless, powerless.  What if everything I'm doing is just spinning my wheels?  What if the end result is going to be the same, regardless of how hard I fight?  But what else could I possibly do?


  1. Virtual hugs, Amelia... that's about all I have to offer.

  2. Hello Amelia. I am sorry you are going through this, but trust me, you are not alone. There are many, many parents of kids with disabilities of all kinds who have gone through it and are going through it right now.
    My son is an adult who struggled much of his early life with Tourette Syndrome, ADHD, OCD, anxiety, sensory integration disorder, and a mood disorder. When he learned coping strategies, things improved enormously, but he had to grow into them.
    The people who helped us most when he was growing up were not the doctors and the teachers but the other parents of kids with disabilities. I recommend that you find and join parent support groups, if you have not already done so.
    I don't blog about this subject any more, but I have written about it. I have a piece in the anthology Easy to Love but Hard to Raise (DRT Press) that might be interesting.
    Visit my writer's page at Red Room: Red Room

    1. I'm working with wraparound, and I go to their monthly support group, plus I have a parent partner. I had a really interesting interview with another one of their parent partners who parents 15-year-old twin boys, both of whom have autism. I couldn't imagine being in her shoes, but when we were trading stories, it was remarkable to me how much our stories were the same. Writing is therapeutic for me. I had put off starting a blog like this for a long time, but I realized that I really needed an outlet for my emotions and frustrations. Thanks for the reading suggestion -- I'll check it out!