Tuesday, October 3, 2017

Once a Day - Then Put it Away

Lynn, sitting behind her daughter Kaylee with Matthew
at a playdate in 2007.
When Matthew was two years old, I met my first special needs mom friend, Lynn. Her daughter is the same age as Matthew, so Lynn instantly became my friend who just "got it" about the challenges of raising a child with special needs. During those dark, difficult and confusing early years, Lynn taught me an important lesson that I strive to live by daily and continue to share with parents navigating this journey. The words in her lesson, although simple, are so meaningful to parents like me:

“We are only allowed to think about the future once a day.  
Then put it away.”

Sounds easy, but this is no simple task when my mind is packed with future “what ifs”.
I often joke with my special needs mom tribe that I have to live forever, because who will take care of Matthew when I am too old – or no longer here?

Since I simultaneously live in two very different parenting worlds (the island of parenting a child with disabilities and the land of parenting a typically developing child), I can say from experience and observation that once our typical children begin to develop interests and show their talents, most parents start to naturally dream about their futures.  He is so good at arguing with me, he’d make a great lawyer.  She loves science and learning, maybe she will become a scientist and discover the cure for a disease.  Thinking about the future might even be enjoyable in the typical world. On the island of raising Matthew, my tribe and I think about the future quite differently.  We wonder if our kids will develop into adults who can shower without assistance or cross the street safely. We wonder if there will be an appropriate adult program available when the special education supports and services offered by public school ends at age 21. (Special education students who qualify (like Matthew) stay in school until they are 21, this is a federal law.) 

Last week, I was at a meeting with one of the special education administrators in our school district advocating for some changes to Matthew’s current program.  I was not anticipating her big picture question, “What do you see for Matthew’s future, once he is 21?”.  Long Pause.  Deep Breath.  I am only allowed to think about the future once a day and I’ve already used up my thinking time,” I wanted to tell her.  But I knew that a well thought out answer had to emerge from my mouth, as current programs are created based on future goals.  My mind quickly darted to the future: Will he be able to work?  Will he have the attention span to have a part time job with support? As an adult, will he be able to live on his own (without Greg and me) in a group home or an apartment with supports?  I had to put these future thoughts away and just answer the question.  “I see Matthew in a supported employment* opportunity as an adult.”  Exhale.

Over the past few years, as Matthew approached turning 13, he formed many friendships with adults in the various lines of work that he enjoys.  Many of these kind people have given Matthew tee shirts from their places of business, and have even told him they hope he works for them when he gets older.  In my daily moment of thinking about Matthew’s future, I close my eyes and picture these tee shirts hanging in his closet and tell myself that if these possible future employers believe in him at this age, then he has the potential to grow into an adulthood filled with many meaningful opportunities. Then I smile, open my eyes, and as my wise friend Lynn instructed over a decade ago, I put my future thoughts away.   Until tomorrow.

Matty's most recent tee shirt acquisition from D & J Refreshments, the snack bar and restaurant at our town pool. Matty was a frequent french fry buyer this summer, so John, the owner asked him if he will come and work for him when he turns 15.  

An 11th birthday gift from his lifeguard friends at Woodledge Pool Club in S. Glastonbury, CT.  These fine young men and women (pictured to the right) allowed Matty to "work" alongside them, manage their schedule and made him this personalized shirt!
Just some of the amazing life guard staff at Woodledge.  Matty is wearing green, in the middle of course - because he became part of the staff.  

Matty with our current sanitation workers - they make M so happy!

After a few short months of living in GC, the sanitation staff gave M his own uniform shirt.  He loves to help the sanitation workers on our street. 

With his tight connections on Martha's Vineyard, he has a possible future job with Bruno's Waste Management.

Our dear friend, Kevin, owns Aquaman Pool company and always makes sure to give Matty his latest apparel.
After attending the amazing Camp Sunrise for students with disabilities in CT for several years, the staff decided to give him his own parks and recreation STAFF shirt!!!
Matthew happily helped the custodians at his elementary school for many years by collecting recycling from classrooms, and helping to clean up in the cafeteria. When he graduated from elementary school, one of his custodian friends gave him this special uniform shirt.

Matty with our recycling professional from All Waste, Inc, Brian, from when we lived in CT.

* Supported Employment – refers to service provisions wherein people with disabilities, including intellectual disabilitiesmental health, and traumatic brain injury, among others, are assisted with obtaining and maintaining employment.  This is achieved through the primary models of job crews, enclaves, or the often preferred job coach or person-centered approaches.   (Wikipedia.com)