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Parenting Children with Special Needs
Parenting Ainsley has always been different. Parenting children with special needs is a minefield of potential heartbreak and tragedy, physically, emotionally and sometimes financially. On good days you know exactly what to do, where to plug in experts and when to step back and watch her grow. Other days you tell yourself – one day at a time. But a life lived one day at a time is exhausting. It is also a lie you tell yourself to get through the very hard days. Every so often you have to pause and think to yourself at some point this child, with special needs, will have to exist without me translating and advocating, moving and removing obstacles.
You lay down tiny stair steps where other kids can lay their own. Scaffolding, you hope, can hold her. Will it endure even after you are gone? You hire a babysitter and she doesn’t work out. Then another one and so on. Eventually one gets it and she sticks. A bond is built. First steps.
Here is a tool that I have found very useful over the past ten years. I created an All About Me booklet and gave it to Ainsley’s camp counsellors every time we dropped her off at camp.
You send her to martial arts and think if she can do this one thing, then maybe she will be okay some day without me. And she soars. Second steps. You try again and again to help her to read and think if she can just master the basics, some day she may be okay without me. More steps. You teach her use her words. Tell the world when something is not right. Tell them what you need, even when I am not there. Speak up. And one day she does. More steps. You agonize and torture yourself over each one of these steps wondering is it time and can she do it? What if she fails?
Allowing Hope In
Then one day you think it’s time she might be ready to do a week away at camp with support. It is a big step. A grand daddy kind of step. A huge adjustment for many kids, but for yours, it’s not just camp. Sending a child with special needs to camp is simply more.
Just Maybe This Works
It’s the rest of her life. It’s knowing that this week if she makes it, if someone else can anticipate and negotiate and manage and handle and care for, and maybe even learn to enjoy her, then she might just be okay.