Ken Shyminsky, a former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as a teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.
I have an weekday mid-afternoon alarm. It goes off everyday signaling the end of school. It is the sound of my son’s blood-curdling shriek the moment he is “home”. Home to Nate is the place in his world that he is free of scrutiny of others and he can let his guard down. The garage door opens, then shuts and it is as if the whole outside world disappears and he is transported magically to “home.”
Click, (the garage door), screech, “F**k” (in the loudest voice you can imagine), bang, bang, “F**k”, screech, bang then “Mom? Hi!”
This is my alarm. My signal that it is my turn. Nate’s turn is over and he has likely done an outstanding job. I no longer worry that his screaming and swearing will be heard by the neighbors. I no longer worry about the noise or the coprolalia.
He comes in to to the kitchen. “Hi Mom.” His backpack bumps the counter and he says, “F**k”, screeches and throws his backpack into the corner. He screeches again. Then “Sorry Mom”.
At this point I make a decision about whether I should ask him how his day was or if he has homework or if I should give him a hug and a kiss. I really want to do all of these things but I play it by ear.
“I had a rough day.” He tells me. He struggles to get his lunch bag out of his knapsack and ends up smashing it down on the counter in frustration at this simple task. Screech then a colossal “AHHHHHH!”, screech.
I wait for him to finish throwing his agenda and homework on the counter and move away from this aggravating task. I go in for the hug and kiss. I gently ask if the “situation” at school ended OK.
Nate generously offers a kiss. The hug he endures because he knows he should. I remove the force of my hug immediately after giving it to let him direct the duration of contact. He tells me in 10 words or less what “I had a rough day” means. He has usually sorted it out at school with the excellent support of his team.
He throws the next test at me. “Can I have a pop?” or “Can we go out for dinner?” or “Can we get a pony?” Whatever the question is doesn’t matter. He needs to ask me a question that he is sure I will have to say no to. He puts on his puppy dog eyes and stares at me with the look that if he could only have one wish ever this is what it would be.
I say, “No”. I don’t launch into an explanation of why I am saying no or ask questions or otherwise engage in the question. “Where would we keep a pony?” isn’t going to help. Just “No” and I move on.
Nate is now irate. He goes about his business yelling, “Why?” and “But…” and “B**ch” and “A**hole” and the screeching and banging ramps up to full force.
Depending on his day he will continue for a period of time attempting to engage me in the fight, banging, shrieking and throwing out profanities.
“Mom! I’m sorry!”
This might sound like a good ending, but it is often not the end but the beginning. If Nate doesn’t get the “feels just right” apology acceptance from me he can quickly ramp up to being irate again. We start all over. Only the second time he is feeling even more sorry and distressed, and the “feels just right” apology acceptance from me is even more elusive. At some point I am able to convince him that I heard his apology, I accept it and I love him unconditionally forever and ever.
Then one more drill. “Can I have a snack?”
Nate grabs his computer and enters his Minecraft world. I go about making him and bringing him a snack with a smile. The alarm has been reset.
Every day is difficult but really, it is so much better than it was — for both of us. I would have never thought that I could see so many positives from this situation, nor be able to brag about all the successes that occur during this short period of time, day after day.
If you missed them, here are some of the successes:
- Nathan is back in regular school, with support, staying a full day and managing his school world successfully almost every day!
- I understand that Nathan has been self regulating all day long and when he gets home it will almost always fall apart at least for a short time. I get it and it is ok.
- Nathan acknowledges and apologizes for all of his verbal or physical threats almost immediately. He has learned his actions and words can have an impact on others, (me in this case) and he appropriately takes responsibility.
- Nathan recognizes that events that happen at school need to be resolved and he does resolve most of them before the end of the day. Again, this is with adult support at school but he is successful at it!
- Nathan is actively doing his after school must do jobs. Book bag in its place, contents unpacked, no nagging or reminders required. That is responsible.
- Nathan hugs me because he knows it is important to me. He knows it is how you show love and affection. He is looking outside himself and to the welfare of others.
- Nate and I manage an extremely disruptive daily transition and we both know we are loved.
I would have never predicted that this would be our new normal after school routine or that this new normal would actually feel good!