The thing about eating out in public with a child who has Tourette Syndrome and its associated disorders is that it gets a little dicey. Ok, sometimes a LOT dicey.
The first hurdle of the evening when going out to dinner is the stimulation imposed on Bean by the restaurant…loud music and voices, lots of people all sitting in close vicinity to each other, lots of movement as servers fly by with giant trays of food and drinks, many different and pungent smells, having to wait to be seated, having to sit where we’re told, not to mention the décor…everything starts assaulting her senses the minute we step in the door.
Sometimes these things don’t seem to bother her so much; perhaps she’s had an especially good and low-stress day and she is well rested and in good spirits and her “sensory cup” has room left for such a rich sensory experience that day.
The next hurdle we must face is her OCD which is also assaulted at a restaurant…she must sit in a chair that is different in a spot that is different with plates and utensils that are different, the food may not be how she expects it to be, there may be people sitting too close to our table, or a dirty spot on the table, or perhaps a garnish on her plate that deems the entire meal inedible.
On the occasions that her OCD isn’t bothered greatly by the restaurant, we have to next deal with the ADHD. That means Bean cannot sit on her chair, she needs to fidget on her chair, stand up, bounce, go to the bathroom several times, she cannot wait to be seated, cannot wait to be served, cannot wait for her drink refill to arrive, cannot wait to leave when she’s done.
She is too distracted by the games on the kid menu, or munching on tortilla chips, to focus on deciding which meal she’d like. And even after she decides, she often changes her mind several times — absolutely unsure which choice is the best. And if we make it through all of that, there are always the tics.
A couple of nights ago a restaurant had a singer going from table to table singing, and all I could think was that the poor singer must have thought Bean was being terribly rude, because of the constant head and shoulder movements, blowing on her fingers and little noises.
And although she obviously cannot help it, and it’s obviously not her fault, I do often, OFTEN, feel embarrassed and frustrated, because short of wearing a giant hat with a digital marquee that reads, “She has Tourette Syndrome which is a genetic neurological disorder that causes her to move and make noises involuntarily, and she can no more help it than you can help blinking, she is doing the best she can, please let that be good enough for you,” they will not know or understand, and they most likely will assume the worst.
It’s hard not to fume when I see an older couple giving us dirty looks, because CLEARLY we have not taught our 10-year-old how to behave appropriately in a restaurant, and CLEARLY we don’t know that people are paying good money to eat, and they’d like to do it in peace.
Seriously, though, it is hard to watch people staring or confused about the tics, when all you want to do is get out and not have to cook one night, or celebrate a special occasion.
The New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie is a weekend spent entirely with other people, and yet it does not cause the stress and embarrassment that even one meal out usually invokes.
It is the only weekend out of the year where every single person in that dining area GETS IT. I don’t feel judged. I think that’s the best bit — people aren’t looking at my child’s seemingly “bad behavior” and immediately deeming me an incapable parent. They look at my child’s behavior and perhaps think to themselves, “Oh, I remember when my child’s OCD was such a struggle and there was always a huge fight over where to sit at the table! I’m sorry they have to go through that, too.”
Camp Bernie is a place where I’ve met people from my area who are going through THE SAME THING that we’re going through, and for anyone who has a child with TS, you learn quickly that finding others in your position is an important, but difficult, task.
Camp Bernie makes it easy. Everyone is friendly and anxious to talk to others, and it’s OK to share your story because people actually want to hear it! And on the other side of the coin, since all the kids there either have TS or have a sibling with TS, they all also get it, and it’s no big deal.
They all have their tics and their other issues, and they just don’t matter in this setting, they focus on archery, crafts, rock climbing, swimming, canoeing and going on the big swing — not on being different or worried about what the others are going to think of them.
Camp Bernie reminds us that we’re not in this alone. There is help out there, there are those who understand and never judge, that there is hope.
On the last day of our weekend this year, as we were walking back to our cabin alone, Bean said to me, “Mom…I’ve never felt so comfortable with my TS before.” And that means a lot, a whole lot. Because at her school and at her activities, she is still very uncomfortable with her TS and her other disorders, and every day is a struggle. But at Camp Bernie, she’s just one of the gang.
Read more about the 8th annual New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie: