Sticky Fingers---The Dilemma of Autism Parenting

This is the first day of school.  Usually, I have some very important thoughts just racing through my fingertips, trying to escape into the machine where they will be safe and not trouble me for the rest of the day.  Today is different.  It has to be.  I can't keep going like this, it will eventually destroy me. I need to find a way to believe that my son will really, truly be okay at school this year. 

I hear a lot on the interwebs about autism moms having the same stress levels as combat veterans.  Piffle.  Those actual studies were about management of the child's behavior leading to measurable residue of stress.  (SEE one of them HERE).  My son's behavior is not what is causing me personally so much stress.  We worked that out through the years and it's nothing up against the stress of the uncontrolled, untameable world, which has hate and prejudice and is full of bureaucracy.  It's those helpless moments as the machine grinds over your family that make life so incredibly hard on me.

Things I cannot control:

• The competency level of the professionals who will work with my son today
• The mood of the professionals who will work with my son today
• The mood of the other children today
• The dichotomy between the promised schedule and the actual schedule
• The dichotomy of his IEP vs. actual instruction/evaluation
• Decisions made by other people that result in harm to my child because they did not adequately prepare or learn about his needs/deficits/strengths
• My internal reactions to any and all of the above
• MIDDLE SCHOOLERS
• My son, while he is not in my custody
• People's willingness to educate themselves about autism
• People's willingness to understand autism
• People's willingness to be inclusive of the autistic person in their midst
• People's reactions to my son's quirks and oddities
• PEOPLE.  Period.
• How a souffle will ultimately turn out the first time (this is a red herring, meant as humor, but also relevant to anyone who has encountered the term "souffle girl" and frankly if you are reading THIS blog and don't know the term, maybe we need to have a few drinks and sit in front of a tv screen for a while and shoot the shit and get to know each other, because clearly you haven't been around me or my family long enough to know us even rudimentarily...)

Things I can control:

• I can comport myself calmly and kindly, even in the face of challenges and unfair attitudes
• I can comport myself aggressively and forcefully when someone does something egregiously wrong and endangers my child
• I can forgive
• I can move on
• I can understand my own PTSD symptoms and differentiate those reactions from the real-time event and scale down my reactions when the situation is not actually dangerous

The STICKY FINGERS PROBLEM, in a nutshell---

If I trust you with my son, and you fail him,

I will not trust you as much the next day.

If I feel I cannot trust you, I will try to prevent you from harming him,

even if you have changed.

If you feel like I do not trust you, you may be defensive

before you even see or hear from me.

If you feel defensive enough, you will lose the ability to change.

It's a centrifuge.

All I ask of those who work with my son is that they listen to the people who do it well and trust that what we say is true and valuable.  I understand that not everyone will be good at this, and that is okay, as long as they are trying and do not get defensive when criticized, corrected, or encouraged to try things a different way.  Some of the autism symptoms are nearly universally true, and the interventions that the autism experts around you are suggesting are good and work well.  Understanding that experience trumps any notions that you may have about what's "really going on" will yield good results every single time.  

This is me, trying to get my sticky fingers out of your business.  Earnestly trying.  I'd like to just drop my son off with you and trust that you won't hurt him.  Sadly, experience has taught me that if I don't stay right there and keep tabs on what you are doing, he will get hurt.

By hurt, yeah, I mean emotionally, and that sucks, but that happens to all kids at school on a regular basis so that is not what I'm talking about right now.  However, what sucks more than ordinary emotional hurts are trips to the ER for concussions because you did not believe me when I said he has balance problems.  The fact that that happened three times, combined with many many other 100% preventable episodes in the past, made me the way I am.  I apologize in advance if I did not control my sticky fingers well enough when we first met and you already feel threatened and defensive.  I am defending against actual harm.  You are defending against perceived judgment of your capabilities and professionalism.  Let's meet in the middle.

Even the best intentioned folk get it wrong a lot.  

Autism is not that mysterious anymore.  

My son is more than his diagnosis.  He is a beautiful, loving kid who tries harder than anyone will ever really know.  I asked him what his greatest fear going to his first day of school is and he said "That no one will like me."  That is not an autism thing.  That's an 11-year-old boy thing.  He's not a freak of nature, he's a kid, and he has the same frustrations and fears as the next kid.  Unfortunately for him, he is inside out, and you get to see ALL THE THINGS he thinks and feels without a filter.  

So...good luck guys.  I trust you today.

Toodles.