As voters in the Indian River School District weigh the pros and cons of increased financial support for the school system — and increased financial burdens on themselves — leading up to a March 28 referendum, voters in the neighboring Cape Henlopen School District are doing much the same, in preparation for a two-part referendum vote this week, on March 16.
But it's likely that few IRSD voters realize that they — or someone they know — could be impacted by the result of Cape Henlopen's vote. If you have or know a child with autism, then you, too, have a stake in a referendum vote for which you cannot cast a ballot.
Cape Henlopen is home to the Sussex Consortium, which was named in 2002 as the top autism program in the country by the Autism Society of America. The program is currently housed at the ninth-grade campus of the school district, about a block from Beebe Medical Center. And its students come not just from Cape Henlopen's home district but also from Indian River.
They may live next door to you, or down the block — but you probably know or know of someone who has a child at The Consortium, whether you realize it or not. You may see the Cape Henlopen bus pass your house at an early hour of the morning and return late in the afternoon. It takes these children — many of them lucky enough to be diagnosed as autistic early enough to receive help before they're even old enough for preschool — all the way to Lewes, five days a week, for a full day of interaction, education and therapy.
Students are offered a variety of programs, from speech therapy to occupational therapy, to more traditional educational help — all geared to help them overcome the obstacles of one of the most challenging and baffling disorders diagnosed in today's children.
There are plenty of theories about what causes autism, including strong indication of a genetic component, but there are no definite answers and no cures. Diagnosis these days is increasingly early and increasingly accurate — but also shows increasing numbers that can't be defined as necessarily due just to better diagnosis or, alternatively, as a real increase in incidence. Parents are left not only to deal with the disorder's impact on their own families but to wonder what they should — or should not — do to help prevent it in the future.
I noticed nothing wrong with my godson at 9 months old. He wasn't talking — normal for that age — but neither was he babbling a lot. My experience of young children was limited at that point, and it didn't occur to me that anything might be wrong. His pediatrician (very well respected in that geographic area, virtually renowned) consistently told his parents everything was on track, then and through 18 months.
At that point, though, his grandmother got concerned. There was the lack of speech — he was babbling a bit by then — and he easily became fixated on anything that spun, such as the wheels on a toy truck. And though he beamed brightly when he made eye contact, he didn't do that often.
Without telling his parents, his grandmother scheduled him for a visit with another pediatrician while he was visiting her in her home state for a few days. That doctor was convinced he was likely autistic, after a single half-hour visit.
His parents were stunned, because his regular pediatrician had been so well regarded and apparently hadn't seen a thing to be concerned about. His mother had other children, and she knew what generally to expect, and nothing seemed catastrophically amiss to her. They weren't at all sure the diagnosis was accurate, because he'd been away from them and his home for a few days when he was seen. But confronted with the diagnosis, they acknowledged he was a bit behind.
Still, we all hoped it was a common developmental delay he'd soon outgrow. I kept reminding myself that Einstein reportedly didn't talk until he was 5. But, hopeful or not, we were now alarmed and extremely concerned. He was subsequently evaluated by a number of doctors and developmental experts, and was diagnosed as developmentally delayed and likely in the mildly autistic/Asperger's Syndrome range.
During this process, they moved back to Delaware, where they now share my home, and were lucky enough to find a local Easter Seals program that provided therapy for him, focusing on sign language as a way for him to communicate. But it was non-specific to autism, since his diagnosis was unconfirmed, and it was limited to a half-hour, two or three times a week.
Then came a life-changing opportunity. We found out that our local area had a really great program especially for autistic kids, through The Consortium and Cape Henlopen School District. As part of the application process, he received a definitive diagnosis of autism that qualified him to attend.
Just after his second birthday, James started attending The Consortium. We packed his tiny backpack for him and put him on the bus each morning, when he was barely awake. And he arrived home — often having fallen asleep during the trip — in the late afternoon, with a notebook in which his teacher described what he did that day.
It was a long day, but he loved it. And slowly, we began to see real progress.
Today, nearly two years later, James — he turned 4 this past Tuesday — doesn't talk like he should, but he does talk, and he does communicate, and he does play with others and listen when we talk to him, even if he doesn't always mind.
He gets very cranky on days when there is no school and clearly is relieved when summer vacations are over. He loves his teachers and his friends. His small class of four students, led by a teacher and assistant, provides not only the interaction that keeps James wanting to talk but the incentive to learn the words he requires to communicate his desires and needs to the world around him.
He has worked on learning everyday activities that most toddlers learn earlier than autism has allowed him to do — to wash his hands, use the toilet, eat with a spoon or fork. He has learned social skills as simple as asking for a toy, or for help, and as complicated as going to the grocery store — field trips to Food Lion! — without running off or getting into big trouble
He knows how to ride a two-wheeler, thanks to gym class. He knows what sound a cat makes (and is a gifted mimic). He even knows his letters and can count to 10. (Now, if we could only get him to sit still for a haircut.)
There are days we wonder if his vocabulary will ever get beyond “yellow school bus” and “broken” (used whenever anything's not working right). But then we remember that not so long ago we rejoiced in a simple pronouncement of “bus” and knew we were always seconds from a temper tantrum when a toy didn't work to his satisfaction.
James has always had one of the most sunny personalities I've ever seen in a child — a true delight, full of beaming smiles, when he's happy. But we've still learned to dread long waits — I admit to calling in a favor to get him to the front of a long line to see Santa — and to keep an extra toy around to distract him from a meltdown.
It's hard to explain to strangers that he's not pitching a fit because he's spoiled, but rather because he doesn't yet have the language to express to us what he needs and he gets so very frustrated when we don't understand what he wants and comply, quickly.
The future is uncertain for James. No one can truly predict what his adult life will be like. He's not as badly affected as some children, but he's also far from up to a normal developmental curve. We live each day waiting to see whether he will improve or pause in place.
The Consortium has begun adding occupational training geared toward helping adults with autism learn job skills. And it may be that 12 years from now, James could hold down a part-time job, or 20 years from now, be out on his own. It's even possible that so far down the road, life for James could be what most of us consider “normal” — especially if the miracles of science bring a treatment or cure.
In the meantime, we are inexpressibly thankful for The Consortium and everything it, and its staff, have done for James. When a sleepy boy doesn't want to stay in bed and reaches out, saying “Help me!” it would be easy for most families to get frustrated — but a part of me delights that he not only can say those words but also understands what they mean. Not so long ago, that wasn't at all the case.
James has a long way to go, but he's getting there with the help of a great program that deserves the full support of a society that is increasingly afflicted with the baffling disorder of autism. As pleased as I am that my own 7-month-old son babbles all the time, right on schedule, I am just as relieved knowing that a program like The Consortium is there for us and our neighbors, should we need it.
I hope that the Cape Henlopen voters will take that notion with them to the polls on March 16, when additional financial support could come for the school, and I hope the voters of Indian River will show their own support for the program by encouraging their neighbors to support it, too.