Here are five ways people have created an awkward moment for us by something they’ve said or done:
Peer over our son’s stroller, who has poor muscle tone and preferred turning his head to the right as a baby, and say hello.
Snap in his face and turn his head yourself saying, “I guess you don’t want to look at me, huh?”
Walk right up to us at the state fair, look at our son in his stroller, and ask us if he has a disorder of some kind. (Really?!)
The woman did go on to explain she has a granddaughter with cerebral palsy and worked with children in hospitals years ago.
This can be a startling question, however, when you aren’t expecting it from a complete and total stranger.
Ask if we have seen a such-and-such doctor….neurologist, physical therapist, naturopathic doctor, etc.
Of course we have!
We want our son to get the best care, medical attention, intervention, and plan of action as possible.
Ask how old our son is, and upon hearing he is two, go on to tell us about what a fun age two is.
They really start to express themselves, show their personality, and on and on and on.
This is a tough situation as a parent of a child with special needs because you don’t care to explain everything to them, and you aren’t quite sure what to say.
So far in our experience we have seen that people just assume everyone has healthy typically developing children.
They mean well, but don’t consider the fact that or son may not be expressing himself, running around, and wearing us out like someone else’s two-year-old.
Make comments about our son being a little snuggle bug, so tired, a sleepy little guy, not quite awake yet, etc.
Because of our son’s low muscle tone it’s very difficult for him to pick his head up when we carry him, so he typically has his head on our shoulder, thus putting him in a position where he looks like he’s going to sleep.
What I really want to say to people following their comments about this is, “HE HAS A MITOCHONDRIAL DISEASE AND CAN’T PICK HIS HEAD UP!”
But that would be awkward, wouldn’t it?