When I told her of my distress, my dear, departed friend Pat used to say “Melissa, just put your hands on your hips, stick out your butt and say ‘SO?'” It was about others’ reactions to our autistic son’s behaviors.
We know that those we care for have a lot more depth than passers-by will ever see. To those people, our special-needs loved-ones are weird. But we also know that we do not have to justify their special needs to anyone.
We have to correct and suppress some behavior. When our son decided to sit in the driver’s seat in the bus and not budge, he had to be forced to move to a passenger seat. When he lashes-out to hit someone or tries to take food from someone else’s plate, he has to be stopped.
However, when he waves a “fidget” in front of his face (a small item such as a short, thin wire covered in felt) in public, or food falls off of his fork, back onto his plate, we act as if nothing happened. Last night, at a restaurant, he constantly grabbed for the small baguettes of bread from across the table and we broke pieces to help him eat slowly. People stared. We had no desire to explain that he’d had a seizure a few hours earlier and was desperately hungry, especially for carbs.
There are times to correct behavior. A restaurant, in our minds is not always the place to do so, especially when we are entertaining guests who understand. We don’t need to explain ourselves to inappropriately staring (redundant phrase, I know!) people that our son is a perfectly wonderful person. We are busy with our guests. He is not harming restaurant property or making loud noises. He is still wearing his jacket and having trouble keeping his food on his fork. We help him without losing track of what our guests are saying. When he finishes eating, he may wave a scrunched-up napkin in front of his face, staring at it cross-eyed if he likes. At least he is not staring at others!
And to our friends living with and caring for special-needs people, please do not be hard on yourselves. If it makes you feel better to hand out cards explaining autism or Down’s Syndrome or any other special need, that is fine as it might help others understand but you do not owe anyone an explanation.
After one of “those” conversations with Pat, she would always end by saying “remember to pray, ‘God of Abraham, Isaac and Jacob, protect the souls of those we love and save those who hurt them, us and others.'”