Saturday, August 30, 2014

Giving in does not mean giving up - letting go - rethinking - the world of rethinking the difficult and imagining the possible

I write"and think quite a lot about living with an individual with a disability.   "With" perhaps is not the key word in this case... perhaps living  "around" around an individual with a disability would be more suitable.

"With" reflects a "cooperative or mutually agreeable cohabitation" whereas living "around" means perhaps we revolve around each other often times not in the same spheres of communication, personal space features or ideas.

Living around I think captures the idea of the journey, the difficulties and the adjustments.

For instance, I like to drink my tea out of  hand thrown mugs or pottery, a Starbucks  ceramic also satisfies my urges to put my liquid in a suitable container.

In the world of our particular disability, autism, ceramic cups, mugs or other  reasonably accommodating containers are not allowed and must be strictly prohibited.  How do I know this whilst living with an individual who is nonverbal? Ahhh well it appears that each time a mug or ceramic drinking vessel came into his line of vision, it was necessary to  secure its demise by dropping it effortlessly on the travertine stone floor. It smashed ceremoniously and with great flair sending chunks and pieces everywhere - a handle under the couch, a lip under the table and various minute shards elsewhere to be vacuumed and swept up.  Was it the look of the implosion - was it the sound or both? It must have created a sensation that in his world is missing and this activity satisfies that need.

On occasion, if possible, I will swoop in to catch the item mid air and quickly remove it from sight. Those occasions, however, are rare.

There is no malice in the action - to this day I don't understand this need to break ceramics - it also includes pottery for plants and certain specific types of ceramics (Corningware seems to be excluded), it has to be the real deal for the most part - hand thrown, crafted with care - and cherished.. those are always the first to go.

I have a box in the barn of shards of various pottery that will make a lovely mosaic table  top some day.

Pieces and slivers of pottery decorate my garden as a living tribute to the mass exodus and demise of my favorite pieces. The Starbucks- made in China mug- must have slipped through the cracks of the "breakage manual" as it is neither hand made, nor one of a kind, nor cherished.... liked, but not cherished.  

And so,  I now drink out of a variety of cups that have absolutely no meaning,  no soul, and are esthetically  unpleasing and  of course unbreakable, a mish mosh of metal travel mugs and ugly plastic containers.

How do we make peace in this war of differences?  I am still working on it as I rebel  every single time I drink from a plastic mug.  We have plastic cups as well for cold drinks which also send shivers down my spine...

I have many mini battles with this type of  living condition and have yet to win this war,  but I make adjustments daily and  attempt to stay ahead of the "autism handbook" that requires destruction of those things that I hold dear.

My clothing can have no labels, not shirts, jackets, jeans, purses, totes. This ban on labels also extends to shower curtains, appliances and even furnaces. Anything that has the nerve to don a label must be adjusted and that label must be ripped  without hesitation from the offending item.  This label ban also extends to those little tiny labels that computers like to sport that tell you what type of processor gizmos are on board your new laptop.. yes those go as well.   Serial numbers on refrigerators are noticeably absent and cause a bit of concern when you are trying to arrange for a repair or part as you have no idea what serial number or model number was originally part of this appliance.

I have made up many excuses as I see quizzical looks from appliance repair persons. Why do these people have no identification numbers on their large appliances, who rips those labels off a nut case? A clean freak ? I scrubbed them off by accident is my usual reply. Easier and quicker to lie in this case.

Hoods have also come under fire, any hood, every hood. "Hoodies" not a  viable word in this household. There are no hoodies or hoods on anything... In fact all sweatshirts have been remodeled to include a hoodless version, frayed and tattered at the neck seam giving them a shabby chic distressed look.  One sweatshirt only lasted about 2 hours after arriving as a Holiday gift.

I believe my VIN\ number from my car would also be missing if I did not lock my doors.  I found it oddly humorous that on an occasion of an outing while passing the back of my car, he ripped off an "autism awareness" sticker. Perhaps he felt we were all aware enough? It was shredded without remorse and left in a pile by the back tire.. So much for awareness.

And so it goes day by day - living around Andrew is to change one's life in small and big ways - drinking from a plastic cup is my accommodation - hiding my clothes and putting locks on closets is a way to cope.

I am not giving up or necessarily giving in - I am succeeding and trying to outwit the autism handbook. I am not sure what  chapter is next, but I know there will be  a new chapter as shredding beach towels  arrived just last week. ONLY beach towels. The handbook must be very specific.

With tongue in cheek I  had the audacity to add ONE hand thrown mug to my collection again hoping he will not  notice, so far it is still surviving, but I carefully carry it everywhere as to leave it alone in the kitchen is to predict it's shattered demise.

Accommodate when you can - rejoice - find joy in the little things - and always try to remember that life is about challenges and changes...



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