Soon it will be time to take a long look at the school district budget — never a great time for a parent of a student with special needs.
Soon it will be time to take a long look at the school district’s budget — never a great time for a parent of a student with special needs.
Summer before last I was in the checkout line at the Water street Stop & Shop and overheard two people in front of me. I can’t get it out of my head.
“I wonder how the schools are here,” said a 40-something woman, her arms full of groceries.
“Well, I hear the schools are incredible,” an older man answered. “I hear they spend tons of money on the handicapped kids.”
“Really? I wonder how the sports programs are.”
“Oh, that’s even better. They have a big rivalry with Nantucket, you know.”
I wanted to stop them and explain that the school district gets reimbursed for some of its special education budget. Though costs to educate all students are substantial and they increase, just like the cost of living increases, state and federal governments provide financial support. (The Massachusetts Department of Elementary and Secondary Education has a tremendous amount of information about special education costs. A visit to its website, doe.mass.edu, is an education in itself. You can find the funding sources the district receives explained on the site.)
I wanted to tell the summer visitors how there are all these kids coming up through the school system who will need services as adults. I wanted to tell them there are hardly any local programs available for young adults with physical and intellectual disabilities on the Island. I wanted to tell them how at every school meeting we have to discuss my son’s education plan, inevitably someone tells us how many great offerings there are for adults with disabilities on Cape Cod or other off-Island communities, even other states.
At our last meeting, my son Dan typed on his iPad, “Moving is not an option. I belong here.” That got our attention.
I have also overheard people say that parents move here because the special education programs are so terrific. Talk with Island parents who are living through it and you might find it isn’t completely true for everyone. I bet I could take a poll and find that most parents of students with special needs in the school district are worried every year that services will be cut or diminished, and their child will take two steps back after moving a step forward the year before.
Imagine the very idea of uprooting your family, your whole life, and moving hundreds of miles, searching for the best possible program for your child and doing it over and over again at different phases of your child’s life. All this just to find some kind of quality of life that is acceptable for him. Not a dream life, just a life where he isn’t stuck sitting in some facility, waiting for a staff person to take him to the bathroom. Moving hundreds and hundreds of miles in search of great programs is not something most families can realistically accomplish.
Our school experience here has been mostly positive. It could be better, but when you have a child with a disability it becomes routine to settle for what you think is probably the best you’re going to get.
I think the most beautiful part about being on Martha’s Vineyard for my son is his own sense of place, his own feelings of being comfortable here. He’s never typed “I belong here” before. I’m not sure I have ever been able to say “I belong here” in my lifetime. He is welcomed everywhere he goes. Everyone knows this kid. I went to Stop & Shop in Edgartown last week, taking advantage of a Friday morning alone. Not to mention a chance to save money without Dan throwing random junk food into our cart when my head is turned.
One of the workers smiled at me and said, “Flying solo today, huh?”
I smiled back, “Yes, and hopefully I’ll save a couple of bucks.”
She laughed and nodded her head, “My kids used to throw stuff in the cart, too. They all do it.”
I felt like she really understood just how nice it was for me to make that shopping trip by myself. Usually Dan is snapping his fingers, picking up packages of cookies and sniffing them, putting Little Debbies in the cart and saying over and over, “Put them back. That’s not good for you. That’ll hurt your teeth.”
I know I’m really lucky. The challenges my son’s disability presents are so much more manageable than those faced by other parents. And don’t get me wrong, I have two other grown children and we all know that every child comes with his or her own set of issues, and none of them arrive with instructions. I don’t mean to sound like parents of children with disabilities have an incredible burden and they live lives filled with heartache and pain — although that wouldn’t be a stretch for many of them.
When you have a child with a disability you recognize small victories. A successful trip to the library without screaming can mean a celebratory dinner. Washing hands without being reminded means a blue star on a chart, in some cases for a 40-year-old woman. A couple of hours of not biting a shirt collar, keeping it dry rather than soaked can mean a bowlful of Goldfish crackers. If your child has autism, just seeing him make eye contact can melt your heart. We find our sweet spots where we can.
Like most Island parents in our position, we don’t know what Dan will do all day after his 22nd birthday. We know we don’t want him sitting in a room, waiting for someone to bring him home. We want him to feel productive, to keep creating the ceramic art he’s learned to love since moving to the Island. We want him to experience happiness. We want him to have a safe place to live after we die. We want him to have friends and laughter and dancing to go with the everyday challenges he faces.
Someplace along the way, I heard that if I can show people — legislators, doctors, neighbors, clerks, everybody — who Dan is, it would help. Put a face to it. So that’s what I try to do. Dan is not alone. There is a line forming behind him and there are people in front of him.
When it comes time to make decisions about the future of persons with disabilities, I want the people with power to know who Dan is. They are really the people who will shape his future.

Comments
well said, Connie. I hope
John Berry Fayetteville, NYwell said, Connie. I hope your article gets Dan and others the recognition they need!
Connie I want to say thank
Kristie West TisburyConnie I want to say thank you this article was very well written. You are not alone with all your concerns of what is my child going to do after they turn 22. I have thought many of times we are so lucky to live her but we need to have more resources for the rising number of SPED children and adults who live here.
Beautifully said, Connie. As
Mary Wasilewski North Syracuse, NYBeautifully said, Connie. As a Special Educator for so many years I understand and sympathize with your concerns for Dan's future. There were times when I was almost sad when some of my students "graduated" because I fretted over what would happen next. Programs for post-graduate study are as vital for students with disabilities as they are for every other student!!
Well written, educational,
Carol Thompson New YorkWell written, educational, and quite touching.
Excellent article Connie!
Trina Bigham Fairhaven, MAExcellent article Connie! Enjoyed every single word. Well said.
Please note that this was not
Mr. B ChilmarkPlease note that this was not an "article" as several refer to it as being. It is correctly labelled "commentary" by the Gazette: a writer "commenting" on a matter of interest to her.
We have become a "Parsing"
Pamela Jacqueline Friedman Long Island - New York [email protected]We have become a "Parsing" Society. Article, commentary, it's irrelevant what you call it. We all "read", because we are interested and curious, and "everything", that has ever been written, is ultimately, another person's perspective. That's how we become educated.
My goodness! So defensive?
BFMy goodness! So defensive?
I don't believe Mr B intended any ill will or that he was in any way being negative.
In the written word,detail and correctness are relevant.
I welcomed Mr. B's contribution as worthy,corrective feedback.
For that, is how we are educated.
I agree with Pamela. What is
Brad WoodgerI agree with Pamela. What is the true purpose of Mr B's "correction"? To diminish the validity of the article/commentary? I hope not.
Mr B, are we the reader truly in danger of misconstruing the authority of the article's voice? What favor have you done us all?
Connie Berry's piece was a first person account of the issues of dealing with special needs children entering adulthood on our island. To me, that was both abundantly clear and wholly informed.
Maybe the Gazette should label your comment under "pettiness".
Thanks Connie. I'm sure that
Brad WoodgerThanks Connie. I'm sure that this commentary resonates strongly with other parents of special needs children, but of equal importance (I think), you have put a face to the issue for the majority of us that have not had direct experience.
I believe that change will come when support comes from the community at large - when the issues of a few become the cause of many. That is what we here consider community after all.
I look forward to meeting Dan someday soon. And I'll put my thinking cap on (albeit a small one) - let's see what we can, together, accomplish.
You are a beautiful parent,
Madeline DoylestownYou are a beautiful parent, Connie. Your writing was absorbed by many parental hearts.
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