Imagine you are sitting in a restaurant and a child picks up the salt shaker from the table and licks it.
Now, pretend that the parent moves the salt shaker away, but doesn't correct the child.
Do you freak out? Glare? Get disgusted? Say something to the management? Say something to the parent?
Sometimes, I am that parent who doesn't correct her child.
My kid doesn't lick things.
Oral fixation is not his particular issue. It is for plenty of kids, though, and many are non-communicative. That means telling them not to lick would do nothing. Instead, the parent simply asks the wait staff to clean the salt container.
What my kid will do is stare intently, roll his eyes, and, when you repeat the question or direction, insist that you never said that.
You see, that's the way about 90% of his seizures appear - staring, followed by eyes rolling up with rapid blinking, and memory loss with a side of confusion.
I don't correct my child for uncontrollable activity.
Sure, we practice being polite. It is expected when he is not seizing, and there are consequences when he isn't polite and praises when he is kind.
But right after a seizure, during the confusion of feeling funny, lost time, and memory loss, no amount of discipline is going to keep a 7-year-old from sounding annoyed at the grown-ups.
If he gets overwhelmed, he hides from everyone, including teachers in the classroom.
Again, discipline isn't going to change that.
Instead, we identify and avoid triggers, work on ways to deal with stress with his counselor, and have him in special twice-a-week classes for pragmatic speech.
Still, people feel the need to tell me to do something about his actions.
I never know what to say.
Do I tell him he has epilepsy? Do I mention his trouble dealing with people and lights and sounds? Do I explain how his brain functions (or doesn't)?
He's a really smart kid. In some ways, that makes the struggle more difficult.
One parent of several children with special needs explained that if people see a child in a wheelchair, they understand.
But if the child is high functioning or the disability is invisible, people feel entitled to judge the parent.
I could just ignore them. I tried that.
It didn't work. It left me feeling embarrassed at my reluctance to explain. I felt like I was harming my child, and all the other children who have special needs.
Now, if you are a parent of a child in this situation, and you choose to politely ignore these well-meaning strangers (or, let's face it, friends and family), good for you! I completely respect that choice and your protection of your child's privacy.
I've made a different decision - a conscious decision to educate the judgmental adults.
I spoke to my kid first. He is so high functioning that he could talk to me about whether it was okay to be open about epilepsy.
If you roll your eyes, glare, or say something about my child's behavior, I will respond. I'll be polite (at least at first), but I will let you know that you don't understand, that he has special needs, and that it isn't your place to judge.
So what can members of the public do to help parents of special needs children?
You can try the same thing that you can do to help all parents.
Assume that the parents know best.
(One exception is in cases of abuse or neglect, in which case you should contact the authorities).
Sure, this means some little brats will be getting away with being little brats. Honestly, that one time you asked the mom "aren't you going to control your child?" isn't going to change that mom or that child. A parent who doesn't discipline can't be shamed into disciplining. They usually just don't care enough to bother.
But for that special family that needs and deserves your support, staying quiet and limiting comments to supportive praise can change the world that the family struggles with every day.
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