By Cathy E. Dionne
From the Fall 2014 Maine Autism Connections, a newsletter of the Autism Society of Maine (ASM) - reprinted with permission from the author
On June 27, 2014, my son graduated from high school. I thought this day would never come. Some may think “most families’ children graduate from high school”. The exception to this is the family of a child with special health care needs. For us it was my son Ben who has autism. The thought of his graduating seemed more like a dream.
When Ben was diagnosed at 18 months old, I wasn’t thinking very far into the future. Graduation was the last thing on my mind. Between speech, OT therapies, and specialized preschool, I could hardly keep up with the rest of the family and all their schedules. But as time went on, Ben grew and transitioned from one grade to another. The word “graduation” would come up from time to time. It would be a brief conversation mostly about meeting a requirement before he graduated. I would sit there and listen like most parents and nod my head with agreement to whatever topic was being discussed.
When he entered high school (9th grade) things became more urgent or at least it felt that way. I began to realize that sometimes it took Ben 1 to 2 years to master something, and now that he was in high school, time seemed limited. What a feeling from just mentioning graduation in an IEP to now having to start thinking about his future! It’s something not many of us parents want to do because we are overwhelmed in the early years. Talking about transition services and plans for your child’s future is daunting and scary.
The first thing to set in place is gathering a good team to help you every step of the way. Your child’s school has to be involved in this process. There aren’t many choices for your child when they graduate. They can go on to higher education, get a job, stay home with mom and dad, apply for adult services through Department of Health and Human Services, or maybe a combination of two. Whichever path you decide, there are many steps to achieve the results.
Ben’s school was right on top of his transition. They have a transition specialist‐ something I believe every school needs. Katrina not only knew what Ben liked and disliked, but she was an outside of the box thinker. This is exactly what a child with autism needs. She started investigating places where Ben could volunteer to see what he was good and not so good at doing. He volunteered at Shaw’s, Nezinscot Farm, and Paris Farmers Union. I knew Ben would not continue with secondary education, but I always wanted him to work. I had my doubts about what he could do, but I knew there had to be something out there he was good and productive at doing. This is where the Transition Specialist comes in. Katrina had an uncanny way of finding that right place for individuals to find employment.
Ben volunteered at Shaw’s for a year. They made him feel welcomed, but that job wasn’t right for him. He was shelving, which is pulling the entire product to the front of the shelves so customers don’t have to reach all the way in the back. He loves food so he enjoyed looking at all the food items, but there was one issue. Being very visual, he would get distracted with all the many different items around him. He also went go to Nezinscot Farms in Turner to water the plants and sweep the floors. Sometimes he would feed the animals. Ben doesn’t like animals touching him so that could be a problem.
Then there was Paris Farmers Union (PFU) right next door to the school. When Katrina went in to inquire about any volunteering that could be done, the manager mentioned that they needed someone to fill bags of bird seed. Something about that job clicked with her knowing that Ben was very visual and how much he enjoyed watching things fall like sand, water, or beans. PFU lent the school a scale so Ben could practice his measuring skills and bagging in a comfortable, familiar environment. There was a six month learning process at the school before they transferred this skill to the store. Once Ben was at the store, he needed time to adjust to his new environment; he was there for only 15 minutes in the beginning. Three years later he can volunteer twice a week up to 1 ½ hours each time. He became a regular at the store, and the manager even gave him a shirt with his name on it. Seeing how much they enjoyed having Ben there, we approached them about making this a permanent job for him when he graduated. They were open to the idea, and Ben was hired as a part time employee on July 6, 2014.
We also chose for Ben to apply for adult services through DHHS. They have a two year waitlist under the Section 29 and Section 21 waivers. You can apply when your child reaches 18 which we did. We are still waiting for those services. Meanwhile, my husband and I decided that Ben needed something to keep him busy during the day so we looked into self‐pay day habilitation services. While we wait for him to receive a funded slot through DHHS for section 29 services, we as his parents felt it was our obligation to not wait for this services but pay for it ourselves so Ben wouldn’t fall behind.
This brings me back to when I could not even talk about graduation in the beginning. Don’t wait! It’s important to start the conversation earlier so you can be better equipped to look into the future and be prepared. It’s like saving for a child to go to college. As a parent I wish I had known this when he was younger so I could have focused more on his future. Transition conversations need to start much earlier than 9th grade.
The Autism Society of Maine provides workshops on this very topic. Please contact us for information on transition services.