To the Parents

I have talked about my feelings and what I went through growing up. However, I haven't talked about what my parents went through during that period. I am the youngest of five kids; I have three sisters and one brother. All of them are able-bodied. So, you can imagine the shock my parents experienced when I came along. 

It's tough having a disabled child. Even more so when you have four other children who are fine. I imagine such questions came to mind such as, "Will I be able to communicate with my child? Will he live long? Will he be able to keep up with his sisters and brother?"

Back then they didn't have the technology available now, so my parents did not know my condition until I was born. Be glad for those of you who find out ahead of time; at the very least there is time to prepare mentally. After I was born, I stayed in the hospital for a month or so that was 45 minutes away from my hometown. You mothers, I want you to think about that: You can't hold your newborn in your arms for at least a month. The only way you can see them is through glass, as they are connected to all kinds of wires to monitor health. I don't know what my parents asked the doctors, but I know one had given my parents the best advice he could have given them: "Don't make his disability your disability. Treat him just like your other kids." As a parent you may think that's crazy. 

With everything your kid goes through, disability or not, you want to instinctively protect them. However, you can't protect them forever. You need to let them learn on their own. And that's what my parents did for me. I don't know if my parents knew of the challenges I would experience growing up, if they thought of what would happen as I got older, but they wisely handled each problem encountered. It is because of them that I am the person I am today. Because of them I show others that I can adapt and do things that others can't. 

I will admit there is a downside. I seem to fall in between being disabled and not, as discussed in a previous post. When I need to be seen as disabled and need assistance, I seldom receive the necessary help. Then when I don't need help, I am seen as helpless. All because I can socialize, I know how to speak to people. So, my advice to parents who worry about what your child's life will be like, don't worry so much. Just be a parent. Let the kids figure out what they can and can't do; they may surprise you! Talk to them like you would any other child. Discipline them just like everyone else. Remember, they are disabled, not unable.

Editor: Esme' Nicolson-Singh (redsbreadslady)