Things You SHOULDN'T Say To The Parent Of A Special Needs Child

I've never been a shy person. I don't have secrets and my life is an open book. I air my dirty laundry in public and usually, I have no problem answering any personal question someone might want to ask. It's hard to offend me and I welcome criticism, so the fact that I felt the need to write a blog post like the one I am about to write might surprise some people.

But in the last year, I have been stopped in doctor's offices, stores, and restaurants by strangers who were curious about Handsome. And some of the things they've said or asked were just... not something I felt comfortable with.

1.) "What is that thing coming out of that baby's nose?
Disabled people have a lot of different equipment that they need and one thing Handsome has needed in the past was an NG tube. It was stuck down his nose into his stomach and it is how he was fed for the first 3 months of his life. While I do not mind answering the question, I do mind how it's asked. We were in a doctor's office waiting room one day when an older woman commented on how cute my baby was and then when she got close enough to see his feeding tube, she gasped before asking what it was.

2.) "Hey, why is your kid shaking like that? WTF is wrong with him?"
One of my husband's closest friends had been staying at our house for a while and happened to witnessed Handsome having a seizure. My husband's friend stared at Handsome in awe as he asked "WTF is wrong with him?" I understand if you've never seen a baby seize before you may not know what to expect, but he could have asked us in a less offensive way.

3.)"I feel so bad for you." Oh how I hate when people pity me, because my son is sick. I get that they are trying to be nice and sympathetic, but don't feel bad for me. Feel bad for my child. I'm healthy. I have a ton of things to be grateful for. I have a normal life. He's the one who suffers. He's the one it's hard on.

4.)"Well, my one year old is walking."
Watching our friends' children who are the same age or younger learning to walk, talk, and feed themselves is already difficult for us. We know our son is developmentally delayed, but it's still not easy to have people tell us "well my child is doing this and that." And its especially hard to have a stranger ask us how old he is and then start telling us how far behind their child he is.

5.)"My cousin has seizures and s/he is normal. Your son will be, too."
People ALWAYS try to tell us what is wrong with Handsome and how to treat it. We have people constantly telling us how we need to try this medicine because its what their such and such is on or that we need a second opinion, because their so and so has seizures and they have a normal life. Yes, people with epilepsy CAN have a normal life. Yes, people with epilepsy can gain seizure control without a special diet, but Handsome isn't one of those people. Handsome is the minority. I get that they are trying to help, but we have seen 4 amazing neurologist. We have gotten second, third and forth opinions.

6.)"Don't you worry about his future?"
Of course we worry about his future. We worry what school life is going to be like for him. Will he be well enough to attend school and will the kids notice he's different? Will he ever be able to live on his own? Will he get married? Will he have a future? I haven't had a night in the last year that I did not cry myself to sleep worrying about his future and just when I start to just take it day by day and not worry about his future, someone comes along and asks me this questions and all those fears come pounding down on me again.

I understand people are curious. I understand people are trying to help. I understand that some people just don't know what to say or how to act, so I try not to let it get to me too much. I try to shrug off as much of it as I can and I do appreciate their concern. I really do. I'm thankful the lady who asked about his feeding tube thought he was cute and that people try to offer advice on different types of treatment, but some days, I'm overwhelmed with stress and worry and asking a question or making a statement to me about my son in an insensitive manner can really make my day worse. So I just hope people don't take this as me being a B word and that instead they learn to be a little bit more cautious when talking to the parent of a disabled child.