A few days ago, Dawn Gagnon wrote an article for the Bangor Daily News about a family with a 19 year old autistic son named Michael. Michael, like my daughter Hallee, is autistic. Michael’s parents are moving out of Maine in order to provide their son with the support and opportunities he needs that aren’t available to him here.
To say that this hits close to home is a huge understatement for me. Hallee was born in Virginia and after my divorce from her father, we had the choice to stay down there or move home to Maine. Back in the late 90’s, while about 1 in every 200 children was born with autism, (it’s now 1 in 68) there was already a fight for services in Virginia and I was told that Hallee would be 1 of about 20 children her age in our local school that would need services as well. In Maine, with much smaller schools and classes, she would have more services available to her with less of a wait, and so we moved.
It was the right choice for us to make. Hallee has thrived in Bangor schools. She has never lacked for services or support and we were blessed to have a bevvy of teachers, aides and support techs, many of whom have been with her from the age of 4 or 5. But now that she’s almost 18, it’s a different story. 2 years ago we were told that it would be at least a 3 year wait for ANY services for her as an adult. Part of that reasoning was because she wasn’t “at risk”. She had a home, a mother, wasn’t violent or in need of any kind of institutionalized care. So even with her developmental difficulties, at best, we’d get someone a few hours a week to take her to the library, maybe to the park. The waiting list has grown much longer.
This is completely unacceptable for my vibrant, social girl. It would take all of the hard work that we have done over the last 16 years and throw it out the window. The more time she’s left alone to be inside her own head, the harder it is to get her out of it. She needs to be pushed out of her comfort zone just a little bit every day. She needs to be with people and be busy. With a 3 or longer wait list, what is she supposed to do? Sit at home and do puzzles? Color in her Sesame Street coloring books? Watch Barney videos on YouTube? Go to the park with Mom and hope she makes a friend? No. We’ve fought, kicked, scratched and dragged our way to where we are now from her diagnoses back in 2001, and I’ll be damned if I’m giving up an inch of that hard-earned ground.
Jobs for young adults with autism are few and far between. There’s a lack of understanding of what autistic adults need in the community. There are so many articles on young children with autism and what they need..the internet is saturated with it. The majority of the focus is on younger kids, not what happens to kids when they age out of services and no longer warm a seat in high school. There are many social challenges as well as vocational and occupational challenges in Maine. Too many people needing a very small amount of available services.
So have we thought about moving out of state? Of course, and somewhere down the road when her little sister is out of school, we’ll very likely have to. I want Hallee to be a part of an inclusive community where she has options, will be made to feel welcome, valuable and be able to contribute to society. I’m very aware that I won’t be around forever, and I want her settled into a busy, productive life before that time and unfortunately, she won’t get that here when I’m gone. Also weather will play a factor since I don’t want her sitting inside 5 or more months a year, so back below the Mason-Dixon line is likely where we’ll end up.
Do I like it? No. Will we deal with it? Sure, just like we deal with everything else that gets thrown at families with an autistic kid. It’s just really sad that we’ll likely have to leave Maine, home, to get her what she needs.