Plans to construct a new 27,000 school for autistic children in Milford, Connecticut, have been put on hold after Planning and Zoning Board members questioned the design and material of the proposed school, today’s New Haven Register reports:

PZB Chairwoman Jean Cervin said the board specifically did not like the “rectangular box” appearance of the proposed school, and the metal roof. She also said the playscape is proposed for the front yard, and some members felt it was too close to the road, and should be placed at the rear of the site.

Cervin said PZB members do not object to the proposed 30,000-square-foot school, which includes a gymnasium.

“They do a very necessary piece of education for autistic children,” Cervin said.

Suzanne Letso, co-founder and chief executive officer of the Connecticut Center for Child Development, is concerned about the proposed changes increasing the price of building the school. Currently, the school has 45 students in one building and rents additional space for seven students from a church. Fundraising for the new school has been going on for seven years.

Notably, what’s missing from the discussion is what sort of design and classroom environment would be best for autistic students, but since when has that ever been the priority…….

Two recent stories in the New York Daily News highlight the struggles of families to provide for their autistic children.

In Staten Island, a police detective got caught up in the subprime mortgage crisis when she bought a fixer-upper with the intention of renovating and quickly reselling it, to pay for therapy for her 3-year-old autistic son. The fixer-upper was to be auctioned off today and the detective, Regine DeBellis, is in danger of losing her own house, too. She says:

“I didn’t get into this because I wanted to shop at Saks - we wanted to get Matthew in a program that treats kids with his kind of autism how not to hurt themselves,.”

In Manhattan, federal prosecutors have accused the owners of an East Side building for discriminating against 11-year-old Aaron Schein. Schein has Asperger’s Syndrome and his doctors had said that a service dog would help him with anxiety. Among those demands were that “the dog could weigh no more than 10 pounds and that the pooch couldn’t be left alone for two hours or more.” As also noted in the New York Times’ Well blog, the lawsuit claims that the building’s owners violated the Fair Housing Act by imposing “unreasonable demands” on Aaron’s parents.

Hope the DeBellis’ story can have a similarly happy result.

In just about one month, I turn 40. Charlie is 11 1/2—-so when I’m 50, he’ll be 21, and when I’m 65, he’ll be 36, almost as old as I am now.

Where will he be living? (With us?) What will he be doing? (School will be long over.) What opportunities will there be for him, or not?

Yesterday’s Bergen Record describes Debbie Legutko, whose two adults sons—24-year-old Derek and 21-year-old Frank—live with her and her husband. Derek is autistic and holds two part-time jobs. Frank requires intensive medical care and is on a ventilator and oxygen.

The Bergen Record notes that some 8,000 individuals with developmental disabilities are on the waiting list for residential supports and services at New Jersey’s Department of Human Services’ Division of Developmental Disabilities. About half live with their parents and “thousands” have been on the waiting list for year (one person was on the list for 23 years). In 2007, there were 24 new placements.

Kind of goes without saying that we have a lot of work ahead of us, for a project that’s going to be part of the rest of my life and is it worth it.

I don’t know of any family with an autistic child who hasn’t, at some time or other, had some kind of financial difficulty, whether in the form of paying for therapies and treatments, or scrambling to live on one income, if one spouse has to quit his or her job to take care of a child. Living in a time of economic crisis means that families may well have fewer resources but just as many hopes to provide for their children. In yesterday’s Seattle Post-Intelligencer, Paul Nyhan focuses on the Otts, whose 6-year-old son, Aaron, is autistic: The Otts’s income fell from $120,000 to $38,000 last year as the credit freeze and the collapsing housing market took a severe toll on the income of Robert Ott, a “veteran real estate broker.” The family is no longer able to pay for behavior therapy for Aaron, who’s been struggling much more in his first grade classroom.

In one of the stark realities of the credit squeeze, [the Otts] can’t even free up cash by selling their home and downsizing.

“We can’t sell this place to make a profit,” Robert Ott said.

Plus, they probably wouldn’t qualify for a new home loan.

Looking back, he wonders what they could have done differently. Maybe held onto more savings? Skipped unproven therapies?

But like many parents dealing with a special-needs diagnosis, they felt pressure to do as much as they could as quickly as possible.

“We just moved forward doing everything,” Robert Ott said.

Ott notes that there’ll find a way to manage and provide for Aaron “‘because there is no other choice.’” But surely there’s a better way, a way to provide for families and their children: Families in Wisconsin, in Washington (as Nyhan notes), in Virginia, and around the country are hopeful for the passage of legislation requiring insurance coverage for treatment for autistic children.

Not that that will be the end of their efforts—-then there’s the need to get therapists and start teaching…………

Noise seems to have become a bit of a theme around here, if not part of a sort of soundtrack. Charlie’s sensitivity to sounds—something he never had until this year—-is so great that he plants his hands over his ears soon as I try to turn on the car radio. Motorcycles, police and ambulance sirens, and the rumble of the traffic all warrant a fast rolling up of the windows, and he sits now in the subway leaning forward, hands on those ears. He doesn’t necessarily seem in discomfort, but trying to screen the sounds tumult.

Fourth of July fireworks have never been a big deal until last Friday night. The rain was coming down as we drove to a firemen’s carnival in a certain central Jersey town and at first Jim and I figured we should turn around. We asked Charlie if he’d like to go to his favorite hamburger place and he said,

“No hamburger. Ferris wheel!”

That decided it.

It was a small carnival on a grassy (and therefore muddy) hill. Despite the weather, cars jammed the parking lot and there was a good crowd of parents and little kids, and teenagers trying to look like they weren’t trying to see who was looking at them. We got tickets and Jim and Charlie got in line for Charlie’s favorite, the ferris wheel. I waved from the ground and took photos and as they were coming down the stairs, a big BOOM could be heard. Charlie cried out and put his hands over his ears. We asked him what ride he’d like to do next and he saw the Pharaoh’s Revenge—it’s the Sea Dragon to Charlie, a big ship that swings wildly back and forth—-and we headed to that. We passed a booth with games and loud rock music and that didn’t help, nor did another BOOM from just past the Pharaoh’s Revenge, which Charlie rode with his hands planted over his ears and moaning.

I rubbed his head and Jim got Charlie a hamburger. Charlie sat on a rain-streaked bench and, as he ate his burger and than some fries, his hands came off his ears and he stopped crying. We left, glad that we’d gotten some rides in as Charlie’d requested, and more attuned than ever to how noisy a carnival can be.

And, to the noises we make. Charlie’s hands go up if my voice rises (as it does when I’m excited and cheering him on for doing something) and on hearing the lawnmower. His own running back and forth, occasional stomping and doing other vaguely noisy things that an active 11-year-old boy is prone to do, have been the reason we had thought we should move from our second-floor condo, once our lease is up in early September. Our downstairs neighbor (a retired man living by himself) indicated a couple of months ago that the noise had to stop. We bought more rugs and have done our best to remind Charlie to walk softly, not stomp (so much) and not run fast and furious up and down the halls. We’re not home all the time, though more in the summer as Charlie’s school days are shorter.

Needless to say, though we live in suburban New Jersey in an anonymous condo complex, we share the same woes as New York apartment-dwelling families with children who make noise and noted in the July 6th New York Times. What child doesn’t make noise? As one mother wrote:

“We do indeed walk on eggshells, and I find myself on tiptoes if I have high heels on, even when I’m not home……I’m a trained monkey. But my 19-month-old is not.”

Ok, Charlie is 11 years old and yes, he does some things—like stomping and jumping—-for sensory reasons, and I guess a “typical” 11 year old boy would be able to stop doing so or could go outside to the parking lot to play, without my going out with him. I certainly don’t wear high heels at home (or at all, actually) and we try, but some noise is inevitable. Jim and I have felt that the best thing to do is to move, but with Jim’s recent back injury, the ruckus and costs of moving just seems extra-daunting.

If we did move, it would be at the end of August/very beginning of September, which is just when Charlie is starting school and I know the transportation department will have to take an extra week to figure out a new bus route for Charlie: And us driving him to school, instead of the yellow school bus showing up, is an unsettling way for him to start middle school. (Indeed, Charlie’s teachers are working on him learning to identify his own bus based on the number posted in the bus’s window.)

So it looks like we’re going to try to be as good neighbors as we can be and hopefully talk about solutions and compromises with the neighbor. We saw it through the fireworks on the Fourth of July and I’m hopeful we can see the noise and the neighbor situation through, too.

I’d knock on wood, but don’t want to make too much —– shhhhhhhh.