By Mark E. Smith
This fall ushered in tremendous changes for me as a father. With my daughter now reaching 13, she’s unmistakably growing up. In our school district, junior high and high school are consolidated into one, so I literally went from waiting for the elementary school bus each morning with my daughter last year to dropping her off at the high school on my way to work this year. Over one summer, it seems that my daughter went from a child to a teenager. In fact, she did.
To her credit – and my saving grace so far – my daughter has been handling her transition extremely well. Despite all of the distractions – from learning the ropes at “high school,” to being a member of Drama Club and band, to a booming social life – she’s done extremely well during the first grading period and continues dedicated and responsible in our home life, as well.
This past Halloween was another hallmark for me as a father: It was the first year that I didn’t take my daughter trick-or-treating. Instead, she chose to go out trick-or-treating with her friends, supervised by a few mothers. As one of the mother’s Volvo station wagon pulled away from our house – carrying my daughter dressed as Bat Girl, and too many of her friends in costumes to identify – I was both proud and a tad nostalgic as I sat in the doorway, waving goodbye.
At 9:30pm sharp, as planned, my daughter’s friend’s mom pulled up in our driveway – kids flopping out every window with energy – and when I opened our front door, there was my daughter on our front porch, with her friend, Marc.
I noted Marc’s supposed-to-be-scary costume – an escaped zombie convict – then waived to everyone in the car, my daughter all wound up, rushing past me, talking about the sights and stories of the evening, plopping her bag full of candy on the kitchen table. As I closed the door and turned off the light in our foyer, the thought hit me: Did a “boy” really just walk my daughter to the door?
He sure did. And, as a father, it’s part of my job – along with guiding and communicating – to accept that my daughter continues growing up. No, my role isn’t to let go by any stretch – as at 13 through college, my daughter needs my guidance and boundaries more than ever – but I need to realize that I’m dealing with an evolving person, and just as my daughter grows, so must I.
Parents and their children with disabilities go through the same journey as my daughter and me – one of a child’s growth toward autonomy – but often at a much later age. The reality is, based on social stigmas and physical limitations, many of those with disabilities don’t begin exploring social experiences and autonomy till much later in life – often, not until their 20s or older – and that fact can dramatically complicate the boundaries that exist between parent and child.
For many teens with disabilities, they simply aren’t as socially active as their peers. Stigmas toward disabilities still remain, where teens with disabilities can be somewhat isolate from a wide scope of peers, and physical limitations may restrict how readily teens with disabilities interact with their peers – I know that as a 13-year-old with cerebral palsy who used a wheelchair, I couldn’t run off with friends in their moms’ Volvos like my daughter can. Further, parents and relatives of teens with disabilities can be understandably overprotective at times, creating an upbringing where physical care and disability-related needs eclipse socialization and autonomy. As hard as it is for those of us with able-bodied children to allow our children to grow up, it can be even more emotionally harrowing for parents of those with disabilities.
As a result, many with disabilities don’t begin to explore their true independence until they are in their 20s, most often facilitated by peer groups who are more accepting at that age of those with disabilities than when everyone was in their teens.
The question then becomes, how do both the parent and the child with the disability deal with the child’s late explorations of socialization and autonomy? After all, it’s one thing to set a 9:30pm curfew for an able-bodied 13-year-old where the parent and child roles are clearly defined, but how do a parent and child with a disability cope with such a situation when the “child” is 23?
The answer is, both the parent and adult child with a disability must be especially cognizant of the situation. The fact is, an adult child with a disability who’s lived a notably sheltered life is not emotionally a teenager or an adult, but somewhere in-between. Most teenagers develop peer socialization incrementally, and that slow, boundary-setting process evolves one’s decision-making skills based on years of social experience – it builds the protection mechanisms of judgment over time. Put simply, healthy teens don’t go from junior high to a drunken fraternity party overnight; rather, they gain social experience slowly, from hanging out with friends to dating, progressing year by year toward more mature social experiences, which then gives them judgment at hand when needed.
Yet, some with disabilities can find themselves with very limited social experience until, say, college, where they are suddenly in very adult situations, without the prior social experience needed for proper judgment. In this way, outsiders who say that a parent of a 23-year-old with a disability shouldn’t be concerned or involved in the adult child’s decisions may be overlooking the reality that the 23-year-old may still be developing his or her social experience and judgment, and requires a guidance that his or her peer group typically does not at such an age. Therefore, those with disabilities – and outsiders, as well – sometimes need to recognize that what may seem like an overbearing parent may, in fact, be a parent who’s especially wise and well-meaning, recognizing that the adult child with a disability still needs guidance at an older age.
Of course, a wise and well-meaning parent of an adult child with a disability must also recognize the importance of allowing his or her child to develop autonomy during the teen and young adult stages. Again, it’s easy for parents to hang on to the role of caregiver and guardian of a child with a disability so tightly that they overlook the child’s necessity for social experience and autonomy well into their child’s adulthood. However, as a parent of any child, while we must first ensure our child’s general safety, we must also allow his or her personal growth within appropriate boundaries, letting him or her earn his or her independence from us one decision at a time, disability or not, 13 or 23.
Interestingly, adults who acquire a later-in-life disabilities and their parents can find themselves in a similar circumstance, where boundaries and roles can revert to a very parent-child relationship, even though the adult child may be, say, 40. It’s a difficult situation when an adult child returns home with a disability, needing parental care. How, then, does an autonomous adult re-merge with his or her parents’ household, and how do the parents accept the adult child’s entirety of adulthood while providing physical care and emotional support?
In two words, it’s difficult. However, it’s not an impossible balance. Again, boundaries must come into play. The adult child must recognize and respect his or her parents’ concern and love, while the parents must likewise recognize and respect the adult child’s autonomy. Surely, a parent-child dynamic will always be present, but boundaries of adulthood – peer-to-peer – must be maintained, as well.
Mutual respect and boundaries, then, are vital between parents and adult children with disabilities, no matter if it’s life-long or later-in life disability. And, in my experience, when mutual respect and healthy boundaries aren’t maintained, the consequences can be catastrophic to all individuals involved. I’ve known many young adults with disabilities who, due to lack of social experience, and against good judgment and parental advice, have landed themselves in very harmful situations, from as common as simply making poor life choices, to as severe as being in abusive romantic relationships based on unresolved disability-related social insecurities and naivety. I’ve also known parents so overly involved in their adult children with disabilities’ lives – such as showing up on the child’s honeymoon – that they’ve either stagnated their children’s emotional growth, or destroyed the parent-child relationship altogether. Therefore, it’s critical that families address the realities of a child maturing with a disability via great awareness, where both the parent and adult child recognize their own roles and boundaries, as well as respect that of the other person.
Certainly, teens and young adults with disabilities are just like all others – they are diverse, where some socially mature sooner, while others later, some mastering social intuitiveness, while others struggle, needing guidance. However, it’s vital that both adults with disabilities and their parents recognize that there can be delayed social experience based on disability – due to physical limitations and remaining social stigmas – where one with a disability may still require responsible parenting into one’s young adulthood and beyond. For these reasons, when we hear of a young adult with a disability struggling to gain autonomy from his or her parents, let us not merely write off the parents as overbearing and unreasonable, but let us wonder whether the young adult truly has the social experience to appropriate handle a given circumstance? After all, it could simply be that the parents are wise enough to know how to best guide their child into adulthood, with the ultimate goal of healthy autonomy, no matter if it’s at age 23 instead of 13.