My son Jeremy “aged out” in April and my daughter Leanne graduated high school in June of 2017. Her shopping is done and soon she will be headed off to college.
When both were younger I never really thought about their four year age difference, but late middle school for Jeremy was when it hit me that both would be launched into the world at the same time. It kept me up at night for a while because not only was it a big change for them, it was a big change for us, their parents, and we needed to plan!
The common thread of planning for both was making sure they kept up with school work, always did the best they could, asking for help if something wasn’t clicking, and most importantly that we had their backs, wanted the best for them, and would never steer them wrong. The differences in planning were significant. For Leanne, there were already built-in supports in the schools to help guide students no matter what track a “typically developing” child will go down. Will it be a trade, military, direct to work, gap year, two year or four year college? For Jeremy there was useful information from the school, but the rest of it needed to be pieced together as he mastered certain skills. As the saying goes, “If you’ve met one person with autism, you’ve met one person with autism,” which in turn meant that I needed to find out what was available for someone who fit his profile.
Being born in 1995, Jeremy is considered part of the “coming tsunami” of autistic children growing into adulthood. According to an article by CBS Boston’s David Wade, “In the next decade, a half million young adults with autism will need a place to live, and a job.” Between hearing about “when the bus stops coming” or “falling off the cliff,” I just wanted to stick my fingers in my ears and say “la-la-la, I can’t hear you,” like a little kid. What also made it overwhelming was that laws were changing, programs were adjusting, and it seemed that everyone was starting a program for kids on the spectrum. Things were in flux when I wanted a neat, tidy plan and I had to go with the flow. I started by projecting out 2-3 years for Jeremy and not any more because of all the changes going on. Plus, planning further out only adds to the ‘what if’ list which can stop you in your tracks.
Transition planning started at 14 years old and self-direction was becoming a viable delivery option, so I attended more workshops, different support groups, made sure I was on the correct listservs, and most important, I networked and talked to anyone who listened!
Fast forward to May of 2017 and you will find Jeremy working part-time at two different jobs, participating in Northeast Arc Recreation programs, hanging with friends and working on life skills at a local social group, and being mentored on skills in the home and community. At this point too, Leanne had picked the college she wanted to attend. After all the running around it was nice to have everything falling into place for the both of them and getting settled in to a new routine. Soon enough though the routine would change again with Leanne heading off to school.
Jeremy and Leanne always had the typical love/hate sibling relationship growing up. She tolerated a lot of his behaviors over the yeras, but would also be the first one to call him out on something that she didn’t agree with. With all the college visits, filling out of forms, and shopping, Jeremy never commented too much about Leanne going to college, so we weren’t really sure how he felt about it. About a week ago, Leanne was out to dinner with her friend so it was just me, my husband Jim, and Jeremy at the table. As we started to eat, Jim innocently said, “This is what it is going to be like when Leanne is off at school.” At that point Jeremy stopped eating and just looked at us. We asked him what the matter was and he said that he had a “funny feeling” in his stomach. We knew at that point that he was going to really miss her, and when we asked him, he said yes. We explained that she would be home for holidays, we would visit her, and that we could FaceTime her, too, which seemed to relieve him a little.
We then suggested that once she was dropped off and settled in, he could plan an overnight trip for me, Jim and himself. When Jim and I plan family trips, we get buy-in from everyone on where to go, but usually Jeremy stays out of the details. We are beyond having to write social stories, but we do talk about the schedule of what we plan on doing with the explanation that things may change. We thought that with him planning a whole trip, right down to sites we would visit, where we would eat and when we would take a break, he would be excited about having full control. He wanted nothing to do with it because he said that it wouldn’t be a vacation without Leanne there. He ended up getting up from the table and throwing his partially eaten dinner away, which is unheard of for him, and headed up to his room. We let him stay there and process everything before Leanne came back from being out with her friend. When she returned we filled her in with what went on and suggested that she make a plan to go out with him before she heads off to school. I think she was touched with the way he reacted, because Jeremy really is the “man of few words” when it comes to his feelings. She went upstairs to talk with him and whatever she said made everything right in his world again. He even joked with us about taking her room over when she was gone, but Leanne called him out on that plan, big time!
Jeremy, in his usual way of communicating in spurts, recently mentioned to me that one of his friends at his social group is the only one at home now, too. I was happy to hear that he was mentioning it to his peers and that he was getting their feedback on it. It made me hopeful that the “man of few words” might branch out a little and get his feelings validated.
So here we are on the verge of another change. At this point, Jim and I have been able to figure most things out for Jeremy with the help of the ‘village’ we created that includes agencies, family, friends, our community and some really great neighbors for natural supports. Leanne has also benefited from these connections as well, and has become a very tolerant young adult. We have gotten this far and I am confident that we will be able to continue to help guide both of our kids in the next chapter of their lives.
To learn more about Northeast Arc’s Autism Services, click here.