Looking for guidance and support for my newly diagnosed son

My 12 year old son was diagnosed with Tourette in early 2015. He experiences mostly physical tics. He also deals with ADHD, OCD, some anxiety but mostly ODD. We live in a remote area with little to no support on this matter. I have researched and read all that I can, in addition to traveling many hours to a specialist which didn’t offer any help.

I am desperate to find some guidance, support and answers on how to help him, as well as our family, control his behavior. He is a loving, very intelligent, active person but his lack of impulse control and other classic symptoms get in the way of letting that come through.

Although it is difficult for me to share, I really need to try other avenues for help and think that this might be a great place to start. Who knows what doors it could open.

52 Weeks of TS: Week 22

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 21 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Pinch pinch rub, Pinch pinch rub

Every once in a while I might do a tug

All day to the night, Until it feels right

Over and over, that’s the way that it goes,

That’s the way that it goes, with the tic of my nose

The loud clap of your hands, Brings the twitch of my neck

And the honking of horns, Brings the jerk in my back

I think there’s a new tic starting off,

Besides my hum, I now have a cough

I never reveal the real me,

I hide and I hide, suppressions my key

Behind closed doors, I jerk and I twitch.

This life with TS is really a bitch

But I write down my story and help people out,

There’s something to say, what our life is about.

My TS is no BS, my doctor gave me a dx

So stop staring and mocking, and pointing at me

Come ask me some info, education is the key.

Hello hello hello everyone. So I thought I’d start this week off a little different, with my little attempt at poetry. Whether its good or bad, it’s all about expression. We have to open our mouths and express ourselves. I’m always trying to educate someone about TS, but I’m also constantly learning more and more about my TS and myself.

Continue reading

School meetings: How to make them easier

Ken Shyminskya 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.

School meetings are most often difficult for the parent but so important for your child.  Your child is special, requires special accommodations, your child’s behavior doesn’t follow the normal or expected behaviour or your child isn’t learning as well as he or she could.  Perhaps it’s not your first meeting or perhaps the strategies being implemented aren’t working.  Perhaps your child’s teacher or school administration isn’t understanding your child’s difficulties and differences or are unable to offer help.  In any case, it usually provides for a stressful time for the parent….trying to make things better for your child.

I have attended countless school meetings.  My son, having Tourette Syndrome, Attention Deficit Disorder, Obsessive Compulsive Disorder and Oppositional Defiance Disorder, provides an unending barrage of challenges for the adults who help to shape his life.  Some of these school meetings have gone well, some have been a complete disaster.  I have survived them, dreaded them and finally, I now feel blessed that the adults in my child’s school understand his differences, see his challenges and strengths, listen to him and help to guide him and teach him.

School Meetings  NeurologicallyGiftedIn the past, have been at school meetings because my child was suspended for behavior that was out of his control.  I have been to school meetings where I have been face to face with an adult who told my son he was faking and didn’t have Tourette Syndrome or coprolalia.  I have been to school meetings where I have been asked to keep my child home for all or part of school days.  I have been to school meetings where administration has asked my child’s psychiatrist how they can “turn a blind eye to his behaviour and just let him get away with it?”  It has been a very heartbreaking and difficult road.

I have not always been able to follow these tips that I will share, but I do know that even the really, really bad school meetings would have been a little better if I had been able to remember the following things:

Continue reading

The Birthday Cake: Lessons from Oppositional Defiant Disorder (ODD)

Ken Shyminskya 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.

detourWhat we have learned from Oppositional Defiant Disorder

  • Oppositional Defiant Disorder responses are deeply entrenched by repetition.  To circumvent this roadblock, try going around or get off and take another route!  This is one of the general rules in our home.  We know that attempting to crash right through Nathan’s “NO”/Stop sign will cause injuries.  And, who wants to flatten their child?
  • Ignore the “No!”  The automatic “NO!” is exactly that – automatic.  It really doesn’t mean anything.  If we wait it out, the automatic “NO!” may subside, then disappear.
  • Give your child time between their automatic  “NO! and your reaction to it.  Nathan often responds with “NO!” and then physically follows through with a “Sure, OK!”  The pause before my reaction was the key to that realization.  Over time, the delay between his automatic “No” and “Sure, OK” became shorter.  Now he often says “No” while he complies with our requests.  It can be funny at times.

Do not enter

  • Pick your battles.  Listen to your child and respect their choices.  Sometimes, “NO!” is really a “NO!” (like the chocolate cake), and not just ODD, (like the “NO!” birthday cake stop sign).  Don’t make a “NO!” into a “You’ll do it because I said so!”
  • Teach your child about their Oppositional Defiant Disorder and what your observations are.  Self insight will help your child immensely to take power over their automatic ODD responses.  We talk about it all the time and encourage Nathan to fight back against his ODD tendencies.

Birthday Pie Lessons from Oppositional Defiant Disorder, ODD NeurologicallyGifted.comWe don’t really know when Nathan’s birthday cake stop sign got placed or cemented there but we all know it is there, sowe work around it.  This year Nate had a slice of pie.  I made cupcakes and we had two kinds of pie.  He picked lemon meringue.  Candles and everything!

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 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.

New normal Neurologically Gifted

Continue reading

School meetings: How to make them easier

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.

School meetings are most often difficult for the parent but so important for your child.  Your child is special, requires special accommodations, your child’s behavior doesn’t follow the normal or expected behavior or your child isn’t learning as well as he or she could.

Perhaps it’s not your first meeting or perhaps the strategies being implemented aren’t working.  Perhaps your child’s teacher or school administration isn’t understanding your child’s difficulties and differences or are unable to offer help.  In any case, it usually provides for a stressful time for the parent … trying to make things better for your child.

I have attended countless school meetings.  My son, having Tourette Syndrome, Attention Deficit Disorder, Obsessive Compulsive Disorder and Oppositional Defiance Disorder, provides an unending barrage of challenges for the adults who help to shape his life.

Some of these school meetings have gone well, some have been a complete disaster.  I have survived them, dreaded them and finally, I now feel blessed that the adults in my child’s school understand his differences, see his challenges and strengths, listen to him and help to guide him and teach him.

School Meetings  NeurologicallyGiftedIn the past, have been at school meetings because my child was suspended for behaviour that was out of his control.  I have been to school meetings where I have been face to face with an adult who told my son he was faking and didn’t have Tourette Syndrome or coprolalia.

I have been to school meetings where I have been asked to keep my child home for all or part of school days.  I have been to school meetings where administration has asked my child’s psychiatrist how they can “turn a blind eye to his behavior and just let him get away with it?”  It has been a very heartbreaking and difficult road.

I have not always been able to follow these tips that I will share, but I do know that even the really, really bad school meetings would have been a little better if I had been able to remember these tips for school meetings: Continue reading

Using positive language for success

One of the first words we learn as children is “No”.

Positive Language: Neurologically GiftedWe learn the meaning of “No” early in our development.  It’s a quick and easy instruction. “No” is simple and used regularly – especially with toddlers because it is immediately effective at that age.  A stern “No” and an action to stop the child quickly ends the behavior that we don’t want.

The effectiveness of this strategy usually backfires for us when our child learns to parrot “No” back to us.  Often called the “terrible twos”, children start to assert their self determination.  They learn that if “No” works on them it should work on everyone else.

From childhood, we become accustomed to hearing and giving  instructions that start with “Don’t” and “Stop”.  We learn that “Don’t hit” or “Stop talking” is quick,  clear and easy to comply with – but is it really?  In the long run, the “No” strategy often ends up creating more problems for us than solutions.

As parents, we often become frustrated and angry with our children because when we tell them what not to do, they quickly find something else to do that is equally undesirable.  ”Stop talking” becomes singing or whispering, “Don’t hit” becomes poking or kicking.

Positive Language:  Neurologically GiftedWithout clear instruction, children are often frustrated as well. They have followed your instruction, but now they’re in trouble for doing something else! They have a multitude of other behaviors to choose from and feel overwhelmed, (or fearful), at the potential of further failure. Children often prefer clear direction so that they can be successful. Continue reading

Help! We need to relocate to Denver for our Tourette son

CoreyCorey has Tourette Syndrome Plus. The plus means he has co-morbid disorders accompanying the TS. He has OCD, Sensory Processing Disorder, ADHD, ODD, anxiety and mood disorder w/ bipolar features. His former school could not facilitate his needs, causing him to be discharged from school. This means mommy can’t work and has to homeschool.

Corey is a very loving, caring and charismatic young man who would do anything for anyone. The family wishes to relocate to Denver, Colorado, so that Corey will have access to better health-care professionals, as well as special schools which are specifically designed for special needs children.

It would mean so much to him to get to go back to school and make friends again! Please help us give Corey a better chance at a normal life! We would also like to get Corey a service dog! You can help us out by clicking here.

If you’re wondering about the picture, this was Corey about a year ago when he was being prepped for surgery to reconstruct what was left of the tip of his thumb. A sensory-type tic which causes him to rub the tip of his thumb along surfaces which he finds pleasurable or which appear as though they may cause a pleasurable response took hold of him while he was in my dad’s shop.

I was at work and he was sick so my dad was sitting and felt sorry for him being bored in the house with grandma, so he broke his own rule and allowed a child in the shop. He had just finished working on a bench grinder, cut the power and put the guards up and turned his back to grab something.

Unfortunately, the grinder was still powering down, and Corey just had to know what it felt like. It grabbed his thumb and literally ground the tip bone and nail bed off, down to just above his knuckle. He still has enough of his thumb to allow full function, thankfully, but was so traumatized that he will now not go within 10 feet of the shop door.

To read more of our story, visit my Tic Tic Boom page on Facebook.

Conquering back-to-school anxiety, part 2: Causes

EDITOR’S NOTE: This is part 2 of a three-part series on back-to-school anxiety by the Tourette Syndrome Foundation of CanadaPart 1 was published on Friday, and part 3 will be published on Wednesday.

As always, in order to understand how to combat the problem, we first need to understand its causes. “Understanding the reasons that students avoid school is the first step in getting them to return,” writes school psychologist Mary Wimmer. In her 2008 article entitled “Why Kids Refuse to Go to School,” Wimmer stresses that school refusal or school avoidance can’t be attributed to a single cause, it results from a complex mix of factors including mental health problems, family issues and the school environment.

Mental health challenges, whether anxiety, depression, Oppositional Defiance Disorder (ODD), Obsessive Compulsive Disorder, Panic Disorder or some combination of these, account for 90 percent of the cases of school refusal. According to authors Packer & Pruitt (2010), anxiety, more specifically Separation Anxiety, Generalized Anxiety Disorder, and Social/Performance Anxiety, is the leading cause of school avoidance behaviour, affecting 22 percent of school refusers.

Children with Separation Anxiety are usually very young, tend to be preoccupied with the possibility of harm befalling loved ones, and are overly dependent on their parents or caregivers. Social or Performance Anxiety, which accounts for 3.5 percent of school avoidances cases, is slightly different. Continue reading