Navigating Special Needs Parenting with Older Kids: My Teenager with Disability
When I first had my son with Down syndrome, it took me awhile to get accustomed to the “new normal”. When Alex was still an infant I found the “Welcome to Holland” poem by Emily Perl Kingsley that describes the transition to special needs parenting, and I clung to it as a way of wrapping my mind around the abrupt change in direction our lives had taken.
Alex is now a high school freshman — a teenager with disability — and at fifteen years old, we are discussing his transition into adulthood. Once again, I feel entirely out of my league as a parent.
When he was a little fella, it seemed like a quaint notion to think of Alex being our little buddy and living with us long into adulthood. The closer adulthood becomes, the less realistic this notion sounds, and the common alternatives (group homes or assisted living) are even less appealing. We hear about better options, such as programs in which seminary students can opt to live with adults with disabilities, or large farms designed for occupational and therapeutic living alternatives.
But these types of programs are few and far between, leaving us wondering what options he will have. When you add issues like transportation (self driving cars are starting to sound like a great option) and jobs, this stage of life is just as overwhelming for us as the first years.
Part of me knows that we have time. Alex is only 15, after all, but I still feel a sense of urgency to ensure that his provision for the adult years is every bit as good as what we have provided for him since infancy. As a teenager with disability, he expresses a desire for independence, to work for a place to call his own and a social life. So, as with my typical children, I seek to fill the role of helping him flesh out these plans and pursue his goals.
Thus, I return to where I began: connecting with my local disability advocacy groups, other parents, and fleshing out my resources. This time, unlike when he was little, I have experience and knowledge. I have some major successes under my belt and a confidence in our ability to blaze the best trail for and with our son.
I am righteously indignant at the lack of adequate resources, and ready to team up with the resources there are, in hopes of multiplying them. And this time, Alex is by my side, in the meetings speaking up and advocating for himself. We make a great team, and we’re prepared to go the distance on this one.
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