The question I’ve often heard bounced around when I attend anything related to disability is: What happens when my child gets older? It’s usually asked by the parent of a teenager to the parent of an adult. I wasn’t too worried about the question at the time because I had more pressing everyday concerns, like potty training. But I blinked and Caleb is an adult and now I have my own firsthand experience to share.
So how DOES the life of an individual with disabilities change as they age? How ARE they perceived by others? After all, they’re not cute little kids anymore. Well, I’m going to answer that question from both a services/programs perspective and from a relational perspective.
Services and programs perspective
From a services/programs perspective, after my son graduated from high school I felt like his services suddenly dropped off the face of the earth. It was bewildering how quickly that happened, very jarring in my opinion.
Especially since from my viewpoint, he was the same individual, with the same diagnosis. But services/programs saw him differently. According to them he wasn’t the same person, he was an adult and didn’t qualify to continue receiving their services. Logically, it makes no sense. It’s as if in becoming an adult Caleb has overcome his disability and doesn’t need help anymore. But I get it…even though I have my own ideas on how to make it better.
Programs available for adults with disabilities
The program options for adults with disability varies from state to state. In some states an adult with disabilities can receive services immediately (here’s a 2017 state by state comparison). In Oklahoma (at the time), there was a waiting list for adult services (they are working to eliminate it) and unfortunately, it was pretty stagnant. There were people on the list who had been waiting for years. So the chances of Caleb’s name reaching anywhere near the top after graduating high school were very slim. As a matter of fact, I had no way of knowing when Caleb’s name would come up.
The other factor that prevented a smooth transition from child services to adult services, was the fact I was unfamiliar with the programs in Oklahoma. This was entirely my fault. I explored some options. But it was pretty overwhelming and instead of clarity, I was more confused. Let me not get started on the copious amounts of paperwork (it’s computerized now) that needed to be completed to get enrolled in programs.
Limited options
I quickly realized Caleb’s options were limited. Either the programs had an ever-increasing, yet stalled waiting list. Or he didn’t qualify because he didn’t meet all the criteria. Then when I finally managed to find a program that Caleb qualified for and that didn’t have a waiting list, it was out of state or the fees were too high.
It was frustrating. Looking back a lot my grievance was due to the fact I had a plan in place before we moved to Oklahoma. I was ahead of the game making Caleb’s transition plan. But when we moved across state lines, I had to all start over AND go to the back of the waiting list. It was so infuriating.
Perhaps, if I’d been more vigilant and less discouraged, maybe those supports would’ve been in place after Caleb graduated. But I really don’t know.
Relational perspective
That’s my experience with services for adults with disabilities. As far as the relational perspective, there are both positives and negatives. When Caleb was little, his behavior was cute and his idiosyncrasies didn’t stand out as much. He also had friends and a community. But as he’s aged, his behavior is more over-the-top and his disability seems more pronounced.
Kids are scared of him. I’m not sure if it’s because he’s taller than they are or because of his deep voice. The irony is, he loves kids and wants to be their friend. But they’re hesitant or afraid to interact with him. There are exceptions. There have been some who’ve taken a shine to him. My cousin’s daughter, for instance. She connected with Caleb and included him in all activities, even if it meant it was just both of them playing. It really warmed my heart to see her do that of her own volition.
Generally, though, my son is in a category by himself. The kids he wants to play with are too little and because his interests haven’t changed much since he was a child, he can’t connect with peers his own age. So he’s stuck in his own little bubble without the community of friends he once had.
Transitioning from pediatric doctors to adult doctors
As far as adults go, I’ve mostly had pleasant experiences. People have been patient with Caleb.
Admittedly, I was worried about his transition from pediatric to adult doctors. But medical staff have gone above and beyond to make Caleb feel comfortable. So far, it’s also been a positive experience, although the offices aren’t as inviting or welcoming as their pediatric counterparts. The staff however, have been amazing! They always address Caleb and listen to what he’s saying even if it’s irrelevant to the visit (which is every visit, all the time). They’ve done a wonderful job of treating him with the respect of an adult and the patience of a child. I truly appreciate that.
My experience
Overall, my experiences with Caleb aging has been a mixed bag. On the one hand, I wish there were more affordable services for adults with disabilities within our state. It was hard to see all his friends and community disappear once he graduated. He’s an extrovert and definitely would benefit from being involved in some type of program akin to what he had in high school.
I also haven’t fully forgiven myself for starting the transition plan late because this issues could’ve been resolved if I had been more diligent.
On the other hand, I’ve enjoyed the overwhelmingly positive treatment Caleb’s received, particularly from his doctors and medical staff.
What I’ve learned
The transition to adulthood will be unique for every one. It will definitely have both positive and negative aspects. We don’t live in a perfect world, so this is bound to happen.
My advice would be not to be discouraged after hearing someone else’s frustrating story. This may not be your experience with your child.