I live at an interesting intersection.
I am a disabled woman raising disabled kids.
Which means I spend time in both “disabled” spaces and “special needs parenting” spaces.
I know disability from both sides.
I know what it’s like to worry about your children and their disabilities. I know what it’s like to have to advocate for them and check on whether or not their breathing and rush them to the hospital and hope the doctors will actually do something. I know the pain of feeling helpless and powerless against things beyond your control – everything from your child’s disability to your partner’s response to the systemic problems we have with funding and disability.
But I also know what it’s like to live with chronic, unrelenting pain. I know what it’s like to be a child and feel like other people can’t accept you because they won’t acknowledge that a fundamental part of what makes you, you is your disability. I know what it’s like to live constantly feeling like you’re a burden, like you have to try harder, like you have to protect your parents from your disability.
I know so many incredible, ‘able’ parents, whose character and determination are creating amazing futures for their kids. But as a disabled parent of disabled kids, there are three things I so frequently want to add to that conversation:
1. Please, do your grief work. Make time and space to talk to a coach or therapist who understands disability deeply (if you don’t know someone, feel free to send me a message!)
2. Please, remember that your child’s disability is foundational to the way they see themselves and the way they see the world. That means that they need the world explained through this lens. They need you to join them in curiosity and wonder to see the world through – and give language for – their partially sighted, spasming, pain-filled, wheelchair-using eyes and then show them how to paint a positive, disability-embracing future for themselves.
3. Please remember that the goal isn’t to create as able-bodied a human as possible. The goal is to help your disabled child become all THEY were made to be. So don’t be afraid to use the supports (like wheelchairs, ASL, AAC, visual stories, etc) that will ENABLE that!
I know it sounds like extra on top of everything else you have to do, but it will make a difference – for both of you!