Our new normal: Parenting our child with Tourette, ADHD, OCD & ODD

Ken Shyminskya former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an 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.

New normal Neurologically Gifted

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Successful Tourette’s walk of Princeton

I was so happy to find out that NJ Walks for TS at Princeton has raised more then $12,000. It felt so good to see so many people come together for a single purpose. My youngest son, Aiden, not only did the walk, but was so happy to see other kids who have the same tics.

There was even one young man who liked having Mario Brothers figures, and my son totally related and played without feeling “different.” A sense of belonging set in for him and he now wants to walk/play again.

My family and I are hoping that this becomes an annual thing, so that next year we can get more people to walk and donate. ‘Til then, we will continue to attempt to find play groups or other children in our area for him to socialize with.

Samstink & Deli-rious

The title is my bad attempt at reframing the Bible story of Samson and Delilah. For those of you who don’t know it, let me give you the quick recount:

  1. Samson is born with the gift of strength
  2. Samson is to use his gift for God
  3. Samson instead falls head over heels in love with a prostitute
  4. Samson reveals to this hoe that his strength lies in his hair
  5. While sleeping, said hoe cuts his hair
  6. Samson, weak and defenseless, is taken to prison where his eyes are gouged out
  7. Samson slowly grows back his hair, along with his strength
  8. Other inmates and guards, perhaps due to amazing prison food or cellmate Bible hour, don’t notice his hair getting longer
  9. During a pagan ritual, when Samson is marched out to be slaughtered, he puts his hands between two pillar posts and knocks down the temple, killing both himself and the everyone in it
  10. The Takeaway: If Samson had just listened to God, instead of that slut, life would have been better.

My version of Sunday’s events – Samstink & Deli-rious (me being delirious, Samstink being played by yours truly on the bike):

dom and sophia on bike

 

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The Argue Jar

With my full-time job and my hubby’s new biz starting, my patience has been strained. Add in a needy pit bull rescue, other family obligations, the kids’ school work, after school classes, and a sputter tic that my darling son has decided sounds best when displayed ten times/minute, I have little room for additional irritations.

On the positive side:

  • I am learning to say no
  • I have greatly reduced my drinking and upped my exercise
  • I have learned to set boundaries
  • I have given myself permission to love others but not allow their negativity to affect me
  • I have learned the importance of defending my personal space
  • I am realizing that I don’t have to explain ANYTHING to ANYONE anymore – not my statements, my kids, my own personal needs

But perhaps the best thing I’ve created for peace despite an insane schedule?

The Argue Jar

Basically, it works like this: Continue reading