Something that I have not gotten used to with Trenton is explaining him. Most people wave at him at first because he always looks like he's waving. Most people probably catch on after a few minutes that he has some type of disability. I don't worry about those people, because usually they don't say anything. It's the friendlier people who come up and chat and want to play with him that I feel the need to explain his disabilities to.
A birthday party that we went to the other night was one of those instances. Most people there may have known about him and that he had a disability, but everyone didn't. One lady was chatting with me, and she asked how old he is. That is usually my cue to explain why my 18 month old is riding in a stroller while her maybe 10 month old was going down the slides at the party. I proceeded to tell her about CHARGE syndrome. I suppose with this habit I am creating awareness.
Later the lady proceeded to ask me if he had involuntary movements or if that was a part of the syndrome, then I explained further. She brought her little boy over and told him that he was actually younger than Trenton. She obviously meant no harm, but it's those little things that tend to hurt. I've read a lot of "what not to say to a special needs parent" articles lately. I'm not really sure what the answer is, because in my case, I probably asked to be separated by explaining his issues. It's hard to know whether people really want to know or if they could care less.
Some of my explaining might stem from habits of fear. The fear of what people think is a prominent one that gets me at times.
"people will think I'm a bad mom because his nose is always snotty" - He can't help it, his body is made that way, and it would be raw if I wiped it every second
"people might wonder why I'm not holding him or cuddling him" - He doesn't love it. He could care less, and most of the time he cares not to be held.
"people might wonder why such a large child is just sitting there while we eat in a restaurant" - he has a g-tube and can't eat by mouth. He ate before we came.
These are all possible thoughts and answers that could be said for them. It is hard not to think this way. It's difficult not to wonder what people think. The solution is the same solution for any other worry or fear. "Be anxious for nothing, but in everything by prayer and supplication let your requests be made known onto Him." Philippians 4:6.
Just sharing some thoughts tonight. Hopefully they will benefit someone. Thanks for listening.