“Last summer, Nancy Clarke, 54, and Jay
Petrow, 53, celebrated their silver wedding anniversary with family members in the
backyard of their Westport,
Conn.，home. As Jay's brother，I was best man at their 1987 wedding at our
parents’ house in Southampton, L.I.， and
since then have watched as he and Nancy have taken on an extraordinary
challenge — raising an autistic and seriously disabled son, William, who is now
The New York Times is outrageous here. They have this
column: Booming’s “Making It Last” column profiles baby boomer
couples who have been together 25 years or more. Couples talk about why their
marriages have lasted.
I’m sure the Times was
happy to publish this one. Parents in their 50s have a 19 year old son with
severe autism. We’re told he wets himself at night and is very demanding.
However he’s also “the life of the party at weddings and bat mitzvahs.”
The mother Nancy also talks
about how autism is genetic and they were worried about having a second child
(who turned out to be a gifted daughter).
To me it’s heartbreaking to
read about raising this child who was head banging and had a sleep disorder as
a toddler and now has such violent outbursts that they have to call the police.
Nancy Clarke says this nightmare has strengthened their marriage. So this is
the up side of autism?
So who will be caring for
William when Nancy and Jay are no longer around? How willing will the public be
to shoulder the burden of William and countless other Americans with autism
when the Times has convinced us all that autism is a genetic mistake the
parents are responsible for?
There wasn’t a place for
comments (of course) or I would have asked why we’re all so accepting of
children like this. There’s absolutely no mention of how many children are like
this and the fact the medical community is totally helpless and clueless when
it comes to autism.
Jay: “We try not to think about what our
lives could have been — what we’re missing out on.”
Of course not, autism just happens----the
roll of the dice. Learn to live with it; it might strengthen your marriage too.
“As the number of children with autism grows,
so does the conversation about what needs to happen next. Autism is the fastest
growing developmental disability in the US. “
Forget the fiscal cliff. Here’s another example of how
passively we marched off the autism cliff. When all the neurologically damaged
kids finally bankrupt us as adults, maybe we’ll think back to news reports like
this one. “As the number of children with autism grows…that number has grown
in recent years….” And now the district announces that they have enough
students to hire their own autism teacher.
Menomonie is next to Eau Claire
and that’s next to me in Chippewa
Falls. The Menomonie
school district has 3,322 students—24 of them with autism.
I wonder what viewers thought hearing about the 8 year
old boy who “gets over-stimulated by things in his environment” or what
a “sensory room” is all about.
Notice there is no mention of what the new teacher will
cost the district or what it costs to educate each of these 24 children
compared to a child in regular ed. Most of all, no one feels a need to explain
WHY this is happening and no one is worried about what this means.
districts are shouldering an increasing share of the rising cost of educating
students with disabilities as state and federal funding remains flat, according
to a state report released Thursday.
report by the state Legislative Analyst's Office found that school districts
must keep dipping deeper into their general funds to pay for special education.
spend $8.6 billion a year on special education, a combination of state, federal
and local funds. The average cost to educate a student with disabilities is
$22,300 a year, compared with $9,600 for a non-disabled child.
districts assumed 32 percent of their special education costs. In 2011, that
figure had risen to 39 percent. The report said the figure is now likely higher
after a two-year boost from federal stimulus funds has dried up.”
Ten percent of California
students have special needs—about 40 percent of those have minor impairments
(and 60 percent have serious impairments, right?).
The Atlantic: How My Autistic Son
Got Lost in the Public School System - Amy Mackin
Here’s a mom
with a son who has Asperger’s (a label that’s soon to disappear in the medical
lexicon). She tells her story of struggle and success. It’s much
like mine---especially the part about giving up on the school system and
homeschooling. I didn’t post a comment here because no one sees the big
picture and the big problem. Why don’t schools know how to deal with
these kids? Why was Mr. Danford the only elementary teacher who really
accommodated Henry’s needs? Why was the middle school seemingly unwilling
to address the situation?
“When we met
with Henry's counselors, psychologist, and administrators to discuss the
transition, everyone assured us he would do just fine. “But they could not
offer him a specific person — an educational aide or a designated teacher — who
would be responsible for guiding him through. After that meeting was over, I
turned to Mr. Danforth and said, ‘I'm worried.’
too,’ he replied.”
I work with
lots of kids on the spectrum. One lovely girl transitioned beautifully
into middle school. Her needs are being met. The teachers know what
will work and what won’t. The reason for this success is the fact that
her dad, her grandparents, and I made countless trips to the school meeting
with teachers, explaining what she was like etc. We took her there
several times with no one in the building, with just her teachers, and finally
with all the students there. That’s what it took.
Here was one
of the comments on The Atlantic story:
“There is not an infinite amount of money and resources to throw at
problems. We cannot afford to make everyone's life the best it can be.”
The real cost here is being shouldered by the parents, so
this makes no sense. It is an indication of attitude of many in the
public who are sick of hearing stories like this and are unwilling to provide
for special needs kids when the issue is money.
So the great mom in the story finds success.
What about the countless children who still endure the bullying and the anxiety
in a system that fails to really help them?