Monday, May 21, 2012

Both Sides Now

One of the hardest parts of raising a child with autism is accepting that you are no longer in control.

Let me back up a little... Our annual IEP (Individual Education Plan) was about a week ago. For those of you who don't know what that means, in a nutshell, it is an outline/plan/contract of all the services and goals (both educational and personal) for the inidividual with special needs in the school district.

We were very pleased with the meeting this year. Our son will remain in general ed, advance to the next level (first grade), retain speech and OT services, and his BIA (Behavior Intervention Aide) for at least next year.

We are very pleased with the result. We are very proud of the hard work Glendale Unified School district has done, they have truly been amazing. There are 6 or 7 members of his IEP team. This is incredible to us that so many people would work so many hours to help one child. I, personally, am truly humbled. But, most importantly, I am proud of my son for the work he has put in to his development. His life is not as easy as yours or mine (which we wouldn't describe as "easy", would we). We are an ABA family. We are hard on him. We have left numerous activities and locations suddenly because he made a poor choice, and we sure as hell aren't going to be those parents that make empty threats. But he is learning. He is Developing. He is improving. And he is in control.

It was very difficult (still is) to accept that there is no tomorrow when raising a child with High functioning Autism. I cannot plan a vacation, a job, an IEP, or even a dinner out without taking his actions into account. He will dictate what the rest of the family will do... always.

It is paralyzing as a man to relinquish this power. Most of us men have been raised (or learned behavior) to solve problems. I know this frustrates women everywhere in every relationship, but, sorry, it's who we are. We cannot fathom why somebody would tell us about a problem in their lives if they didn't want a solution. We bitch about how women can be so complex, while women bitch about how we can be so simple.

As a man, my son's future is something I cannot fix (alone). I need help. My wife provides most of that help, but therapists, psychologists, lawyers, teachers, doctors, school administrators, insurance adjustors, family and friends are going to tell me what I need to do. It's my job to decide what advice or path is best, and which advice and or path is complete bullshit (JENNY MCCARTHY). We are constsantly reminded as special needs parents that "We know our child best. We inherently will know what is best for our child"...

But sometimes I don't.

Sometimes, we need help. Sometimes, I need to admit and accept that there are people smarter than me. Sometimes, I need to reluctantly trust that people have my son's best interests at heart and not their own. Sometimes, I need to admit my mistakes and that I am fallible. Sometimes, I need to admit I am not in control.

Sometimes, I need to accept that I cannot fix this alone.

I think that there are few men that stick around to raise special needs children because these admissions are too hard to make.

I deeply respect and admire those that do.

Remember, Autism Sucks.

1 comment:

  1. One of the greatest things Sheridan has taught me (and he has taught me too many to count) is to relinquish control and seek help.

    Ok, that said, is the divorce rate disproportionately higher in families with a child who has autism (compared to other special needs/diagnoses)? I know that divorce rates are higher among families who have a child with special needs compared to families who don't. Interestingly, the stat is the opposite for families who have a child with Ds (less likely to divorce, but obviously still happens).

    I ask because it appears from your posts that Jack having such an amazing daddy (you are definitely kick ass) is a rare thing in the autism community. Just curious, and I wonder why the discrepancy from other diagnoses.

    Just pondering :)