We live in a world where disabled individuals are often marginalized, ignored, and excluded. I worry that my kids move and live in a world that often sees them as simply “less” because they are disabled.
So this is what I want for them:
I want people to accept them, not regardless of their disability, but with their disability included. Having a disability doesn’t make them less human or valuable. I want my kids to be acknowledged as individuals who have a right to exist in the world, to pursue their dreams, to participate in the social spaces they want to be a part of.
I want my kids to know real friendship — the type of friendship that is two sided. That means playdates, hanging out, and invitation to parties, spending time together outside of school activities. Not a “service project” or someone “being nice,” but a true friend.
I want my kids to be happy. It is really that simple.
I believe all of us as humans look for something that gives us fulfillment. A passion. A cause. A fire in your belly that helps you live your heart out. I want that for my kids. I want them to find fulfillment in what they chose to do. Not what I think is worth their time, but what they want to do.
As a parent of children with disabilities, I will always advocate for them, but the older they get, the more I need to help them become their own advocates. And eventually, it may be appropriate for me to step aside and allow them to lead.
Our kids with disabilities don’t have much say in what happens to them. Many of our kids have been poked and prodded by doctors, and while it is done to help them, they often have little say in what happens to them. It is the therapies, the interventions, the new thing we are trying. As my kids grow and as I learn from the disability community, self-autonomy is something our kids don’t experince much. As their parent, I want to respect and value what my kids have to say about themselves. I will respect the choices about themselves they make. If my child hates physical therapy but loves swimming and gymnastics, let’s make that the physical therapy and see how it goes. If my child doesn’t want to attend an event because the atmosphere is overstimulating, I will not force them to be there. It’s respecting their voice.
Note: This is not referring to emergency or life saving medical intervention.
Ultimately, I want my kids to be as independent as possible. And for the areas where they struggle, I will be right here when they need me. I am not going anywhere, my kids may always need my support.
Note: It is hard to let go, but I am working on it.
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