Where Special Needs Parents Meet-
My friend and I have children with very different disabilities, her daughter has complex medical issues, my son has Down syndrome. She has gone through things I have never known.
And yet. There’s a place where we meet.
We speak the same language—one with school acronyms, medical terms, and too much paperwork.
We walk the same halls—the nerve-racking one leading to the IEP meeting, the narrow ones of the hospital and the daily ones of therapy appointments.
We lie in bed with the same fears—of other’s low expectations, what the future holds, and “am I doing enough?”
We experience the same joys—the long-awaited accomplished milestone, the battle for a new service won, the law that’s finally passed.
We have the same kind of love in our hearts—one that is deep and fierce.
Even though our children may have different challenges, the paths we walk alongside them intersect at unexpected and transformed.
We thought this was a life we could not handle. Along the way, we’ve fallen down in deep ditches of surgical waiting rooms and people who have disappointed us. We’ve experienced the roadblocks of paradigms that need moving and heard the word “never” more than most.
And yet, all of those experiences with our kids have left us transformed. We may fall down, but we get back up because we have children worth the climb. We hold each other’s hands in those waiting rooms and join hands together in the effort for change.
Our children have helped us discover a strength deep within and have also made us more tender in the process.
We may alter some of their circumstances, but we wouldn’t change who are kids are and we thank them for showing us who we were always meant to be.
Us parents of children with different disabilities may walk different roads, but there’s a place we meet. At the corner of unexpected and transformed is where you will find us sharing a cup of coffee, or a stiff drink, a tear, or a laugh, and often times both.
We are the parents of children with disabilities and we have our kids to thank for bringing us to this intersection only a few ever find.
**Behind the post**
My friend pictured here and I met during our time at a Partners In Policymaking Course. You can read about that course here. I’ve had several people comment on my blog that it’s hard to find other special needs parents. When I was new in this community, I found that to be true. I only looked for friends in the Down syndrome community. A few years in, I have found parents outside of the Ds community and it’s been so rewarding. If you are looking for friends, advocacy classes or groups are a great place to search. If you are a Down syndrome parent looking for connections, check out the Down Syndrome Diagnosis Network for online support.
