After years of asking myself questions like “Why am I filling out this medical form when this information is already in their computer?” or “Why does this doctor only see patients during school hours?” and other such silly observations along the journey through parenting a child with special needs, I suddenly find myself invited by a couple of well-respected healthcare institutions to share my perspective with their staff and students.
It’s quite a responsibility to be given a seat at the table among pediatricians, speech/occupational/physical therapists, psychiatrists, practice managers, social workers and policy lawyers. I am so grateful to those family advocates and disability activists who have worked tirelessly to create a culture where a parent’s experience and opinion is valued and sought out. I hope I don’t let them down. I’m also acutely aware that I am speaking on behalf of the vast majority of parents of children with special needs who feel disenfranchised and powerless; due to either perceived or actual limitations, they don’t know how to speak their mind, share their story, or give their feedback to the professionals who hold the purse strings, create the laws, implement the therapies or design the communities that impact their families’ lives in very real ways. I hope I don’t let them down either.
On the heels of us parents pulling up a chair at the table, there’s another group beginning to claim their space here too—siblings of people with special needs. As the folks who will possibly spend even more of their own lives with their special family members than parents, sometimes as adult caregivers and guardians, they have a perspective to add to the conversation. Particularly amazing to me is how aware they are of the ways this experience has shaped them and helped them grow. Their very “boots on the ground” experience with a decidedly non-parental (read: less hysterical) perspective gives their experience credibility; I know I seek out their advice to help me create a family where both of my children can thrive and feel nurtured.
As sibling groups mobilize to create support groups and education like SibShops, conduct and share research, and build their own community within the Family Movement, I just have to say how glad I am that they are here.
They also just might be more effective at educating the very folks whose tables I’m sitting at these days than I am. In blogs, at fundraising events, on YouTube, in the media and on Capitol Hill, they are savvy and persistent.
Here’s a recent example, a short but remarkable video by a teenage sister of a boy with special needs. I can’t believe how lucky we parents are to be standing shoulder-to-shoulder with her: