Getting help with Autism: How Bill Doyle’s family found support
Being the parent of a child with autism presents a variety of challenges, challenges you’re not really prepared for. Every phase they enter is different from the previous one and requires different strategies. When our son, Jack, was first diagnosed, it didn’t really come as much of a surprise, since we already knew he was different and had missed several developmental milestones. That is the probably the most worrisome stage as you really don’t know what you’re doing. The internet is your friend, but there are a lot of conflicting opinions on what is the best path to take; you’re especially concerned with screwing things up that will affect his growth down the road. We were extraordinarily fortunate in that we had access to a wonderful Early Intervention program; that, along with the effort my wife and I put in to support and educate him, made a great difference in his life.
Once he got into the grade school years, there were a new host of worries, primarily scholastic, but also social. Two of the more heartbreaking aspects of his autism were the lack of affection he showed, and his profound difficulty in social situations. Fortunately he was able to make a few friends who looked out for him and gave him classmates he could spend time with; he even had a sleepover birthday party one year. Unfortunately, they started to drift apart as his friends got older and started taking part in activities that Jack was unable to join. He is now in high school and almost always eats alone in the cafeteria. Academically, the concern in grade school and middle school became the extent to which he could be mainstreamed. The Jackson School District has done a wonderful job supporting Jack, he had a full time para-pro (a teacher’s aide) who accompanied him to class and helped keep him focused and on task although, as a senior, he no longer has one. Gradually, the number of special ed, or resource room, classes he was taking started to dwindle as he became more capable in the classroom, both academically and socially. His social skills are still a major concern but his teachers tell us (at his IEP- the individualized education plan the school, along with the parents, puts together for him) that he is a full participant in class, even raising his hand to answer questions and asking for help most of the time when he needs it.
Now that he’s a senior in high school, the concern becomes the big one: How is he going to function as an adult in the real world? Hopefully we have done enough to prepare him that will at least be able to get some sort of job. Again, the school district has been awesome in that goal; Jack is eligible for services from the school district as long as he doesn’t graduate. Even though he is academically eligible (and will walk across the stage with his classmates) we are not going to let him graduate so he can avail himself of the vocational training the district offers. Jackson Liberty High School had a motivational speaker address the student body and I asked Jack what he said. Jack does not give lengthy answers so he boiled down the entire one hour presentation to, "He told us to follow our dreams." I asked Jack what his dream was and he said, “To go to college.” We had been vacillating between trying to get Jack into college or just learn vocational skills through the school district and the state division of vocational rehabilitation services. Jack’s response made the path forward clear. Some of the vocational training the school district provides is in conjunction with Ocean County College so that will hopefully ease him in to the college atmosphere and help teach him how to self advocate. We attended a conference at Rowan University about transitioning for special ed students and they really stressed the importance of self advocating since in college there are no IEPs or para-pros. There are transition services available, such as those provided by PerformCare and the state Division of Developmental Disabilities but those are often age restricted. Autism Speaks also has a wonderful package of information on transitioning that you can learn more about here. The State of New Jersey Department of Education has a page of resources as well which you can see here.
One of the biggest concerns parents of older children with autism have is where their child will live as an adult. There are solutions like group homes available, but we want to avoid that at all costs. Since we got legal guardianship of Jack when he turned 18, we have to be sure we have a will that will spell out what will happen to him when my wife and I are gone. Fortunately, Jack has two awesome older siblings who have both volunteered to house Jack for the rest of his life. That is a huge relief. We have applied for SSI in case he can’t adapt to the work world as well as with the Division of Developmental Disabilities for their services in case his brother and sister can’t take care of him for whatever reason. We are cautiously optimistic that the next phase of Jack’s life will turn out being as successful as the previous phases.