I received a lot of advice when I first had a baby. Some of it was horrible and some of it was great. But one thing I really took to heart was that you had to be an advocate for your newborn. Newborns are easily overtired and overwhelmed, and it is your job as their mother to know when to step in and say enough is enough. It’s your job to be their voice.
And then my son grew up, and continued to be nonverbal. He never learned to walk. My job as his voice became even more crucial, and I quickly became known as an advocate for all special needs children–by complete accident. I can easily speak for my son, but the misconception is that I can speak for all children who appear similar to my son.
The most important thing to remember when you see a special needs child in your everyday life is that their parents aren’t advocates for all special needs children; their parents are advocates for just them.
Just as every kindergartner is not the same, every child in a wheelchair is not the same. I can talk all day about my handicapped child and answer any questions you care to ask about him, but I can’t answer questions about every child in a wheelchair. And it’s not fair to me, or to my unique child, to assume that I can.
Please don’t expect me to be able to answer questions about special needs children in general. I honestly don’t know. If you see me, or another parent of a child with special needs, and you’re curious (or your child says something), ask me about my child. Ask what his name is, or comment about how amazing his hair is, or ask where he goes to school. Find something you have in common to ask about, instead of asking what is “wrong” or focusing on what is different.
It’s my job to speak for my nonverbal child: to be his voice, to fight for him, and to love and respect him. I go to his IEP meetings, I go to his doctors’ appointments, I go on his field trips, and I put my tiny six-year-old on a bus to school every morning for him. Because it’s what he needs. If you’re curious about another child, please ask his parents. Most parents of special needs children are just like me: open and willing to answer any questions. We appreciate when people open a dialogue and want to learn. You just have to ask.
Some of the things I have to do are really hard. And some of the things I do fill me with so much pride and joy I think my heart will burst.