Our journey through Tourette Syndrome, ADHD, OCD, and other related impulse control issues

Andrea Hasey, TSFC – Victoria Chapter, Board Secretary on October 21, 2013

When my son was 5 and sitting on the couch with me, learning to read, I said to him "Buddy, you've got to stop making that noise, it's rude; and PLEASE sit still for a minute, you can’t read if you’re upside down!"  Our path from this point to the time of diagnosis was full of confusion, uncertainty, self-doubt, standing up for my child, standing up for myself and my husband, and generally feeling a bit lost.  When the diagnosis finally came it was a relief, but not a magic wand.  All those feelings remained, but at least we had a direction to travel.  Tourette Syndrome, Attention Deficit Disorder, Obsessive Compulsive Disorder, Learning Disability, Sleep Disorder, Anxiety, Sensory Sensitivity… It’s an overwhelming list. 

Not that all those labels came at the same time.  It’s all been a roller coaster ride that we remain on to this day.  Our son is now 13 and I can honestly say that every decision we’ve made has been painfully difficult.  In grade 4 we pulled him from mainstream school and put him into a school specializing in kids with learning issues.  In grade 7 we pulled him from there and brought him home where I have now become his teacher.  We’ve had to decide about medication, how to manage sleep, how to deal with bullying, how to deal with isolation… the list is long.

Our path with him has been so different; we jumped off the mainstream ‘raise a child’ scenario a long time ago.  And since no guide book popped out after he did (wouldn’t that be great?), I feel like we are constantly making things up as we go along.  We have floundered, cried, argued, advocated, questioned, read, sought help, listened, and made decisions to the best of our ability.  We have lived every loss and heartbreak with him, hanging onto his roller coaster in a desperate attempt to settle it down, ease out the sharp turns, and be there for him.  Sometimes it is hard to breathe.

Support and education.  That is how we have made our way through this.  We have good friends and family who believe in us.  And we continue to educate ourselves.  Going to this conference is about continuing to understand, expanding our knowledge, and helping us be the best parents we can be.  Dr. McKinlay is someone who can provide a unique perspective – not only is he an expert in working with kids with all different kinds of impulse control issues, but he has grown up with some of them himself.  He has his own story. 

At this workshop I’m looking forward to being inspired, being reminded, and learning new things.  Dr. McKinlay has an excellent reputation; I’ve never met someone who wasn’t excited by what he had to say.  I think I’m most looking forward to hearing him speak about recognizing the difference between behaviours that are purposeful and behaviours that are a symptom of impulse control issues, or as he refers to them: leaky brakes.  He will also have new strategies and tools for working with kids with leaky brakes, and I am always open to having a new strategy in the tool kit.

At the end of the day I want to feel excited for my child.  I know that we are on a journey and there are a million hopeful paths we can travel, but sometimes it is helpful to be reminded.  I highly recommend coming to hear what Dr. McKinlay has to say.  Everyone’s story is different, but coming together in a place of understanding, with a speaker like Dr. McKinlay, is an opportunity to learn, grow, and feel understood and supported.

Please note the workshop mentioned in this blog post took place on October 23, 2013. Please find below a recording and powerpoint presentation from the event.

Recording: Leaky Brakes Impulse Control Related Disorders Workshop for Parents and Caregivers
Dr. Duncan McKinlay, who has Tourette Syndrome himself, provides new strategies and tools to support children and families living with “leaky brakes” (impulse control challenges). He will explain how to recognize the difference between behaviours that are purposeful versus behaviours that are symptomatic of leaky brakes. Dr. McKinlay currently works in “The Brake Shop” — a service he created for youth with Tourette Syndrome & associated disorders at the Child and Parent Resource Institute in London, Ontario. A powerpoint of this presentation can be found here: http://tinyurl.com/mxk65eh

PowerPoint: Leaky Brakes Impulse Control Related Disorders Workshop for Parents and Caregivers
Dr. McKinlay has Tourette Syndrome himself, giving him a unique perspective in addition to his vast professional knowledge. He will provide new strategies and tools to support children and families living with “leaky brakes” (impulse control challenges). In addition, he will also explain how to recognize the difference between behaviours that are purposeful versus behaviours that are symptomatic of leaky brakes. Dr. McKinlay currently works in “The Brake Shop” — a service he created for youth with Tourette Syndrome & associated disorders at the Child and Parent Resource Institute (CPRI) in London, Ontario, Canada.

Comments

I have a son with Tourettes who is now in his mid 30's. His body was constantly in motion as a child though medication was never required. My heart goes out to you. My son't symptoms actually increased as an adult to the point where he did need medications. He had migraines and would goes days without sleeping, jaw grinding so badly he was drilling a hole in his cheek and continuous snorting. And, after seeing a TMJ specialist about five years ago he was shown videos of adults with Tourettes her were treated with a specially fitted mouth guard, the change has been miraculous. Thought he still has difficulty with sleep he no longer snorts, his jaw does not grind, he does not have headaches. I am aware what you have described was much less in my son's life when he was small so I don't want to infer that "I understand" I am simply saying that my son's symptoms where tied to a physical anomaly that has been corrected and the results have been substantial. If he cuts back on wearing his mouth guard (he wears it at nights and when relaxing during the day but does not need to do so all the time) his symptoms return. All the other diagnoses OCD, ADHD that you have mentioned could have applied to him on a low level.

I am attending the evening session on Thursday. I want to say that my son was a cocktail of medication for the symptoms I described above and all were highly detrimental to his quality of life (again, this was as an adult and I am not suggesting medication is always the wrong decision).

Sandra

22/10/2013

Yikes, that sounds painful Sandra! I am glad he was able to find relief with a mouth guard. It seems to speak to the creativity required when finding things that work for your child.

I wanted to comment on something that stands out for me, from Dr. McKinlay's workshops. He emphasized that if a child has tourette and rages, that it would be important to assess for obsessive compulsive disorder (OCD) (along with the other potential leaky brake conditions). A tool that Dr. McKinlay uses to assess for OCD is the Childrens' Yale-Brown Obsessive Compulsive Scale (CYBOCS). His comment really stands out when we think about our daughter's experience, as it wasn't until we identified and started treating the OCD, that her rages finally settled. We had a great psychiatrist that had a pretty strong sense that it was OCD that was getting the best of her and that an SSRI would help her to quell OCD's strength. We also found a clinician to coach us through many hours of exposure and response prevention therapy. We really needed both at that time to help us regain her health. It was a bumpy path, but very well worth it now that we are on the other side and she is feeling happy and more settled.

I would encourage families with tourette and rages to advocate and even to go so far as to ask a practitioner to use the CYBOCs to assess for OCD. We had no idea initially that she had OCD, as she didn't know what was going on herself, didn't verbalize her obsessions, didn't have obvious compulsions, but raged for hours and days on end when it was at it's worst. Once we learned more about "just right" OCD and had the results from the CYBOCS, it all started to make sense.

Thanks to everyone who attended the workshops! We are forever grateful for Dr. McKinlay's time and know that our community's ability and commitment to support children with impulse control challenges will continue to grow. Welcome to the club ;)

Allison

28/10/2013
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