Have you wondered what it is like to be your child who is medically complex or has a disability? What about your older child, now young adult?
After querying several tweens, teens, and young adults from different parts of the country, and based on my observations and conversations over the years as an educator, there are several common themes despite different diagnoses.
Things really do change
Older kids face a few different issues. If their disability isn’t obvious, such as with metabolic disorders and even heart conditions, they have a harder time getting others to believe that there’s an issue. Girls seem to feel this is true more than boys. Adults seem to have less patience and empathy. Peers keep their distance. Kids’ awareness of this increases with age. As one tween girl noted, “It’s easier to have medical problems when you’re little because little kids don’t care.”
Once middle school begins, things change dramatically. Kids want to be popular and that means they’re less interested in being around the kid with tics, AFOs, or who is in a wheelchair. Older kids who are complex often find several different choices before them: they’re thrust into an activist (and educational) role, they become a “mascot,” or they simply become invisible. Too often, they’re seen as disabled first and a tween/teen/young adult second.
They’re thinking more about their futures
Older kids begin thinking about their futures. Kids with disabilities are no different. However, they often face different challenges moving from childhood into adulthood and they’re aware of it. Kids with physical disabilities have to consider whether a career is something they can do. Entire fields may be immediately written off because of the sheer physicality of a job. The college student with type-1 diabetes may face significant grade penalties if she doesn’t talk with her professors about why she’s missing class so much. This threatens her future chances of getting into a competitive graduate program in her chosen field. Overall, older kids are often forced to share more about themselves with more people than is required of other kids.
Others face considerable challenges with rigid professional requirements. For example, all teachers in the United States who wish to teach in the public schools must take the Praxis examination. However, that examination does not differentiate whether the teacher will teach kindergarten or high school. The test, including advanced mathematics, is the same. Even if a young person has managed to excel in college despite certain learning disabilities, this rigidity might still preclude her from having the career she’s prepared for.
While parents might fret about whether their child will be able to live an independent life, older kids are thinking about this issue, too. Many are aware that they’ll need jobs that provide medical benefits. They want independence but some worry they lack the physical capacity to ever care for themselves or be able to attend school full time or work a full time job. School guidance counselors have little training in considering these special needs, and school supports seem ill equipped to manage these types of issues.
They want to be seen and included
Friendship is a critical element of growing up, and this is true for older kids with disabilities, including those on the spectrum. While parents are focused on setting the stage for financial independence, older kids are focused on their social lives as well. Kids weight this issue differently, but it arose for all of them. Not only are they aware of how their behaviors irritate others, but they’re also very sensitive to how others view them. When asked what he wanted others to know about older kids like him, a young man on the spectrum replied that he hoped they’d be patient and treat him, “with the same respect that a normal guy would get.” A tween girl noted that she just wants other kids to know that she’s a regular kid, just like everyone else. Those with obvious physical disabilities requiring supports like AFOs and wheelchairs face social isolation at times, in addition to some differences in keeping up with peers or participating in popular social activities.
One older girl noted that one of the problems is that kids (and adults) haven’t learned how to be around kids like her. Kids with disabilities are almost never seen in movies or on television. When they are, they’re usually either boys, on the spectrum, or have a visible disability requiring a wheelchair. No one sees a kid living with a heart condition. Finally, for kids with severe allergies, they find that parents (in particular) start to get tired of trying to include everyone and just decide to stop trying. This leads to wrenching choices about participation versus physical safety.
Supports need work
We all connect with others who share common interests and experiences. Older kids want these same connections, but they find them more difficult to achieve. Support groups for kids on the spectrum continue through high school; however, kids with other types of diagnoses seem to have fewer social supports.
Older kids enjoy regular friends; however, these friends don’t necessarily get what they’re going through and have experienced. Being able to connect to other older kids who have undergone the same procedures, use the same medical equipment, and see the same kind of specialists is important. It’s different talking to another kid who shares your diagnosis and understands that the fatigue that has set in isn’t going to go away after a day’s rest.
Recently there has been tremendous anger at the Muscular Dystrophy Association for shutting down certain summer camps across the country and moving to professional staff instead of volunteers. Parents and kids have noted that those camps were safe places where their kid could be among peers and just be another kid. These were places that forged life-long friendships with kids and volunteers, and gave kids a place free from bullying and an environment that was just their speed.
Community supports tend to miss the mark for older kids with disabilities on several fronts. Many kids tend to do better with one-on-one supports, and yet school districts tend to push group-based activities. For kids on the spectrum, therapists seem to have less to offer than tutors, but schools pay for the former and parents pay for the latter. Many supports are aimed at the kids who need the most support, for obvious reasons. However, higher-functioning kids fall through the cracks. They’re impaired enough to have physical, educational, and social difficulties, but not impaired enough to warrant public resources.
Finally, when kids have to advocate for themselves (as they do when they enter college), things become even stickier. Those with physical disabilities may be reluctant to admit they need accommodations for learning issues. There may be gendered differences in a willingness to find supports. While my sample was small, the girls were much more likely to advocate for themselves than the boys, regardless of diagnosis. In contrast, tween girls (in particular) were far more likely to face social stigma for any kind of physical or intellectual difference.
How families navigate the challenges of their older children will vary widely. Factors including diagnoses, financial capacity, and awareness will significantly affect how older kids enter their adult years.
Older kids with disabilities are aware of their own challenges. Some embrace them, others resent them. They’re forced with balancing a diagnosis and being an emerging adult. They lack role models and often have few social supports. Those that do exist are focused on functional skills and educational outcomes. Only for those on the spectrum do social relationships seem to factor into supports and training.
In a society where perfection is desired and awarded, being perceived to be “imperfect” carries a social cost. However, there is also a reassuring level of activism and strength among older kids with medical conditions or disabilities. They use social media to connect with others even if their local communities are social deserts. Online schools, tutoring, and home schooling provide higher functioning kids the ability to excel, but only if their parents can afford it.
There is little sense that these kids are going to fade into the woodwork as they get older. Instead, whether loudly or through quieter actions, they are going to live, love, and flourish on their own terms.