The Anesthesia of Civility
On Monday 11/19 (my birthday. yippee kei aye) persons objecting to the proposed slash and burn "changes" in funding for their autistic kids were given an opportunity to speak before a rules committee.
This august panel started the meeting by addressing that they would discuss rule number "2234-5280069574836478961-4" (or something like that).
Ya gotta love civics! I'm all for decorum and civil passage of rules ...and this was in a format entirely right and all together proper for correct rule making.
But it is strangely disheartening to hear something that has the ability to trash your kid's life, as well as your own, read off like an account number on an electric bill.
As they read off the rules of decorum and order and what they were to discuss and not discuss and how it was to be discussed and who was to discuss it and when they were going to discuss it; I thought about the time I got a wisdom tooth pulled under a local.. 'couldn't feel a thing, but there were the oh-so very business-like pliers all cold gleaming surgical steel, a crrrrrrrunch as the tooth cracked, followed by some pulling and then "pop"! I thought, " ' didn't really need that part anyway".
The clean, orderly, surgical way of it all....whether it's minor surgery or a debate team discussion, serves to make things less stressful, makes the undiscussable - discussable. The formality and nice, clean orderly way has a way of stripping out emotion, a way of quietly saying; "We're all rational here. Now, now and hear, hear! No room for emotion and tears. Oh, and could you please hand me that bone saw?" Yes, Robert's Rules of Order makes things sort of ....painless. The Anesthesia of Civility: we'd still be running around clubbing squirrels without it. How many wars were launched and lives crushed while under it?
Except today, in this room, this surgery was going to very different. This was a part I did need. This was my son, this was my heart, it was already hurting like hell. The anesthesia of Civility wasn't working too well for me.
I was third to speak and read my notes to a packed room while Timothy leaped about, arms waving, roaring with laughter and shouting the question to people, "WHAT KINDA CAR YOU DRIVE???" . The poor aid I dragged along spent her time chasing him across the room and all over the eighth floor of the office tower as he careened around obstacles (e.g. "people") like a turbocharged F-1 in the Grand Prix.
It was an emotional meeting with many of the parents chosen to speak barely able to contain their tears, so I was in good company. I made it about 1/2 way through my little speech before I started to crack and had to wait a second here and there while pinching the bridge of my nose hard to keep my eyes from watering up. I thought, "Christ! Keep it together man!" Then I thought, "So the f'k what! This Hurts. They need to see ...no, SEE. SEE what their god damned rule is doing to people." I got it together, sort of, and finished up.
Afterwards I thought, "Well its a public forum of a rules committee, so the minutes are recorded for all time."
The things we do for our kids.
*****
"Notes for a Public Hearing on Funding for Autism"
Our son Tim is autistic and has received ABA treatment on the “I/O Waiver” in the State of Ohio for the past four years.
When he started the program at age 4, he lived a life that existed only in his head. Toward others he was alternately unaware of their presence or highly aggressive, especially toward infants, which he would attack immediately whenever he saw one.
He could not read or write, could not carry out the barest of instructions, and was far from toilet trained.
He did not address or seem to miss us (his parents) He never asked, “Where’s Mommy or Daddy” when one of us was gone on a trip …sometimes for days at a time. He did not acknowledge our return at all…even his mother’s after a four-day absence, barely glancing up.
He did not play with toys, preferring to jump continuously throughout the household and tear up books.
Attempts to redirect or control him resulted in a rage in which he would attempt to bite or pinch.
He was unreachable, uncontrollable, destructive and even at that age, a threat to society because of his proclivity to attack other children and infants.
Today, while he is far from being “normal” for a boy his age, Tim can read, write, do simple math, has been toilet trained for three years and can usually communicate most of life’s physical needs.
His attacks on the family pets, his younger bother and small children have diminished to very infrequently…. and most importantly, he knows that such attacks are terribly wrong.
He recognizes when his brother or we are not around, inquires about us when we are missing and greets us upon our return. Like any child, he lives with great joyous anticipation for events such as Halloween, Christmas and his birthday and he believes in Santa Claus. The other day he was playing and laughing with a toy… something so typical for most children; but something he never used to do.
Demographically we fall close to what is typical for a family of four in central Ohio and we have a near normal life, as is possible. Not extravagant by any means, but there are presents at Christmas and birthdays, children’s magazine subscriptions and a little extra for camping trips and visits to the zoo and King’s Island on occasion.
That is because of the foresight of a few within Ohio who recognized the need to fund the highly specialized one-on-one training called “ABA” which has been proven to work with autistic children such as Tim.
Because of their vision, Ohio has become known within the autism community and held out as a beacon for what can be possible and what can be achieved.
Without this amazing program, our beautiful son would now be in an institution for his safety, the welfare of our other child and society.
Here are the effects of loosing funding on one Ohio Family:
As his parents we have no doubt that his forward progress socially and intellectually will slow terribly if not cease and possibly regress without continue daily, personalized and intensive intervention.
Tim currently receives instruction and one-on-one supervision from a team of three aids, a program director, a psychologist, a psychiatrist and a speech therapist. In addition he is on three different types of medication to help to keep him oriented to the here and now and reduce the number of unprovoked attacks he will launch on small animals, children and infants.
This highly individualized, intensive and daily intervention is necessary because Tim must have direct one-to-one interaction almost continuously. Without it he quickly retreats into himself again and looses contact with the world.
The total cost for Tim’s care is conservatively estimated to be between $40,000 and $50,000 per year, which is roughly equivalent to the net income of a wage earner making between $51,000 to $64,000/year
Since insurance does not recognize autism as a covered illness, a loss of funds would require us to draw down our retirement account, max-out available credit and eventually sell all assets, including the house, and use what profits we could net.
All monies would be consumed within 6 to 7 years and we would be left with no retirement, debt ridden and a house in one of Columbus’s more dangerous, run down areas.
None of those estimates include extraneous expenses that always arise with children and it would ensure that there would be few presents for birthdays and holidays, no fun trips for the children. It would not cover major expenses like auto or household repair or illness not covered by insurance.
This is with both parents working and the loss of the either wage earner’s job would be instantly catastrophic.
In short, it would be the barest of existences for the entire household for years, threaten to sacrifice much of our younger, normal son’s potential, and in return would only buy at the very best, an additional 6 to 7 years of care for a child who is now eight years old.
That is not a life that anyone of you sitting on today’s panel would tolerate for your own.
There are hundreds of families with very similar stories in Ohio, which translates into near thousands of souls whose lives your proposed changes would emotionally and financially decimate almost immediately.
This does not include the hundreds of caregivers that the state has invested training into, which would most likely be unemployed.
In the end, for reducing funding for those that Ohio’s constitution has promised to always protect the only effect will be wasted life and increases in poverty and hardship for Ohio’s most vulnerable residents and those that care for them.
It will also increase future costs by almost guaranteeing that Ohio will pick up the tab for Tim and hundreds like him later, when unable to function as a member of society and support himself, he will become either a danger to society, a victim of crimes against his person, committed to a state institution for his own good or wandering the streets unable to communicate enough to even beg…. just one more of the many pathetic homeless now gracing our streets.
In reducing this funding, in anticipation of a Federal request not even made, Ohio’s legislators have forgotten their promises to stand by and for those that voted for them and the better interests of their State and they have caved without the least bit of a fight to Federal policies that are not in the interest of their state or those residents they are sworn to protect.
Please.
Ohio has a program that shows the rest of the US what is possible. Ohio has shown that a State can be both fiscally prudent and innovative in its approach to a terrible affliction that destroys so much of life’s hope and potential.
The funding and programs must continue without interruption and, in fact, they must be better funded and protected for anticipated increases in Ohio’s autistic population over the coming years.
Thank you
