The New York Times

“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 19.”

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.

WQOW Eau Claire, WI

“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.

Daily Breeze

“California's school 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.

“The 25-page 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.

“Schools 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.

“In 2005, 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

http://www.theatlantic.com/national/archive/2013/01/how-my-autistic-son-got-lost-in-the-public-school-system/266782/2/?single_page=true

“Great. I'm out of options, buddy.”

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.’

"’I am 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?