Thursday, August 28, 2014

Resilience - Autism - Following your own energy

My mantra for this time in our collective lives is TRUST yourself - Follow your own innate energy.

If I had a dime for the amount of advice I have been given by "well respected, knowledgeable experts" in the field of autism, I would be writing to you from a beach in Fiji or perhaps not, perhaps a beach on the Maine coast since I am more bent to lean in that direction.

But nevertheless I am sure I would not be here...

We have been dealing with autism for 17  years... diagnosed at age 3 and now age 20... no one gave us a road map and perhaps it is good that they did not since the road has been bumpy, tumultuous, paved oftentimes with tears, gnashing of teeth, frustration, sorrow, and joy.

There is no way to predict where or how your particular son or daughter will fare. I did all the "right things" intensive early intervention hours and hours of it, but the reality of that was and is that for some individuals the neurological damage is too hard wired... too intensely convoluted for any therapy to alleviate all or even most of the symptoms. You can hope for remediation of some... but we have found when we push a few down, a few more surface.. never ending. .. My friend calls it the whack a mole syndrome...

The child you have at 5 is a far cry from the individual you see at 15, 18 or 20.  

We engaged in ABA and all of the bells and whistles that that entails, discrete trial, antecedent tracking, behavioral tracking, 10 second interval data, this data that data - none of it in the end meant a hill of beans,  mainly because those tasked with "collecting" these reams of useless papers never put the data to any good use.   Many of our fire pit bonfires  have been ignited with useless "data" and IEP notices.

We collected and collected and collected but no conclusions were ever arrived at. No strategies ever offered and no interventions tried to reduce reduce those behaviors they were collecting data on in the first place. More data followed more data.  I was buried in data.  I was told often "we don't have enough data points." When he began to punch himself in the head from frustration I was told the "data points did not indicate he had enough head hits to warrant an intervention." As a parent I asked myself isn't one head hit too many ? Isn't anyone going to push a panic button, hold a meeting, yell FIRE - we need to act?

Surprisingly no one did--- it was as if it is and was expected - you know kids with autism do all sorts of weird stuff  - so we will just observe and oh ...yes... collect more data. When the "data points" hit a certain mark and/or he loses consciousness (which ever comes first) we will have a meeting to talk about the data.  I say this tongue in cheek, but in reality that is basically what happened.

To that end, this year at age 20 I have decided to take interventions into my own hands... follow my own heart, my own internal ticking that tells me what to do or not do.. I am not always right, but sadly and wickedly my interventions based on observation, instinct and love have proven in many cases to be spot on.

If I had one word for parents battling this battle, follow your heart.. your gut and your instinct.. Buck the data collectors and save your child... do not let the data collection go on and on while your child needlessly suffers... stand up, speak up and change your world...

cate for Andrew

1 comment:

  1. Cate, I think the parents are the experts with regards to our children. I'm enjoying reading your posts because you write well. Thank you for sharing :)