When my daughter was born with Down syndrome, it did not take long for me to hear other special needs parents talk about the “special needs island.” A wishful place where everyone who lives there has a child with a disability.
I confess at times I’ve fantasized about this make-belief island. The place where nobody stares when your child is having a sensory overload or where an IEP is not a fight. The blissful place where all your friends get it because they live it too. The island where you know you are not alone.
From talking to special needs parents, I often hear they feel isolated. And while the idea of the island is indeed very appealing when you’re having a hard day and it feels as if nobody gets it, more than anything, I want people to see us.
I want church members to notice when we have not made it to church and care enough to pick up the phone and call to see how things are going.
I want my kids to be included and invited to birthday parties.
I want those who are not impacted by disability to recognize that my kids are kids first, they enjoy what other children enjoy.
I want people to recognize that disability is part of who my kids are – it has always been their normal – it is not a big deal, not a reason for undue praise, or a reason for looking away.
I want community gatherings to make it possible for us to join by making things accessible for my family and other families like mine.
I want to live in a place where people with disabilities don’t have to continually prove themselves and what they are capable of.
I want my kids to grow up in a community where they have an opportunity to get a job.
I want to walk into businesses and see employees with disabilities and not think twice about it.
I want to live in a place where we are included, not excluded.
Perhaps living in the special needs island would be easier sometimes, but I wonder if that would only lead to more isolation.
I want people to recognize the beauty and the value of my family, and your family, and my neighbor’s family.
But most important I want to open up the world for our kids. A world full of possibilities, beauty, joy, and even the hard because it’s part of life. I dream of a world – not an island – where every special needs family has a place of belonging within their community.
It is okay if the world is uncomfortable with families like ours, because little by little I believe we can help change disability attitudes.
And for the days when you too feel like you want to jump in a boat and go live on the special needs island, remember that in this vast world many of us can relate to what you are going through, we got each other, and you are not alone.
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