April is autism awareness month, but around our house we’re acutely aware of autism every day. Our son Dan brings it up every time he clicks his tongue to the roof of his mouth, snaps his fingers and walks out to the deck, even in the snow, so he can repeatedly touch his toe to the edge of the first step that leads down to the yard. He’s a reminder that there is no cure yet and autism, for the moment anyway, is here to stay in our lives.
Despite the colorful puzzle piece logos and the fitting attention autism sometimes gleans these days, living with it is still very much a challenge for families. They still have to maneuver their way through a quagmire of therapies, funding options, school IEP meetings, and hopefully corral some semblance of a social life for their children. Then there are other family members to live with and jobs and bills and all the rest. Sometimes autism wreaks havoc with relationships and causes financial burdens that erode the well-being of families.
Parents who would normally struggle to find time for a date night in the best of situations oftentimes find that night becomes more of an annual, not weekly, event. It isn’t easy to find someone willing to come stay with a child or adult who requires uninterrupted attention. You can’t pull up a movie on Netflix and paint your toenails while you babysit a child with autism, or if you stay with most adults with autism. Dan doesn’t really care for television watching, unless it comes with a king-size bowl of popcorn and even then, when the bowl is empty he’s out of the chair and heading upstairs to his bedroom before you can say, “Hey! Come back and watch with me.”
The real challenge before us now is what will Dan do next April, when he’ll have one month before he leaves the comfort and familiarity of the Life Skills classroom at the regional high school. He’ll have to leave classmates behind, and friendships that he was able to cultivate for the very first time. It’s going to be hard for him and hard for us.
We’re scrambling now, along with the school staff and administration, to cobble together some kind of life for him after school. An adult life, we hope, with work and recreation and new friendships. We’re looking in the community to find businesses and organizations where Dan might be able to use his gifts and where he might find meaningful work and opportunities to have fun, laugh and enjoy himself. The days of remembering to send him off with picture day money and sneakers for gym class are numbered now. We’re anxious for the future because we don’t know exactly what it will look like. All we know is that it is coming.
Dan has supportive people in his life who make a difference. They work with him at school and through Community Services. We know they care about him and once he was even invited to go out to dinner. He typed to me the other day, “I love it here because people like me.”
I know our living on this Island has made an impact on him just as I know it has done the same for me. Our calendars may not always be filled with social engagements, but our hearts are filled with the tranquility that comes from living here. This Island has given us some peace in an otherwise disquieting life.
Despite our concerns, we’ll keep moving forward. It’s the only direction we can go and it’s where our hope is.
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