Today I am honoured to share a guest post by a friend and fellow mother of a child with a disability. Antonia is mother to three children, including Max who has Down syndrome. Antonia’s experience of rejection in non-inclusive school environments – rejection of both her child and herself over something her child cannot help – is an experience very common among families of children with disabilities. When she shared this piece of personal writing with me, it touched me deeply and I wanted to share it to help others understand, and to encourage them to give our children a chance at real inclusion. Thankfully her children are now in a more inclusive school-environment than at the time of writing, but the message remains one that needs to be heard and is widely felt. She has kindly given me permission to share it on my blog.
Every week his sister gets an invitation to a play date… every second week his sister gets an invitation to a party. The cruel irony is that Max enjoys company and parties and knows exactly what they are, I can see his shoulders slump every time Lottie skips in with another invitation.
He gets his Mum to organise the odd play date, which is never returned. The odd party but again, the gesture is never returned.
He just wants friendship like everyone else, but nobody sees any benefit in the relationship for them so they don’t pursue (or at least the parents don’t pursue it…).
Max has a lifetime of this ahead of him – so it often makes me wonder why people are so stingey with their kindness, a couple of hours out of their life, an afternoon of giving. No one is asking for a lifetime of giving, just the odd act of generosity. The odd “how are you Max,” the odd conversation, too.
All of the above applies to me as well…as the mother of the child with a disability.
I see all the mothers effortlessly nurturing friendships, I see the eagerness in their eyes when they greet each other. I once felt that eagerness from people and I once had a swarm of friends with whom to laugh and commiserate. I loved giving people my good aspects… humour and empathy.
Today I feel fragile and untrusting. People turn their gaze from me, they clearly do not want to pursue a friendship. Nobody is interested in my story. At times someone lets it slip that “a lot of people are complaining about Max” and it is like a stab in the heart. It makes me weak with sadness that people are so ruthless and unpitying and ungiving. Their children have the basic ingredients to survive, my child does not. And every negative thing he does is used against him to justify the same underlying philosophy – he does not belong here with us.
I can see Max and myself retreating into ourselves… and it is so against our nature. Neither of us can be the best we can be, and every day the incentives to try slip away.