“With severe tics, I can tell that Alden often feels separate from his own body.”
Welcome back to “Hey Jeff”, a regular column where I share a meditation in response to someone’s unique challenge or curiosity. This week you’ll meet Superdad Stephen, and his amazing son, Alden, now 15. Alden has Tourette’s Syndrome, a condition where his body makes involuntary tics and sounds. Stephen, Alden and I began corresponding two years ago, when Stephen sent me a handwritten letter explaining how meditation has helped Alden. We did a bit of detective work together around the how and why of this, some of which I include below, as the details may be of interest to other unsettled nervous systems. The result was a fun wiggly body scan meditation that I created specifically for Alden, but is really for anyone who wants to send a bit of kindness into their excitable animal bodies – particularly when their bodies have agendas of their own! Head’s up: the guided practice has a bit more talking than usual (Alden says the extra support helps him relax). The extended version has more space and silence.
To Alden and Stephen: thank you for letting me share your words and your art. Your story and courage have been an inspiration!
Jeff Rat
Excerpt from Stephen’s Original Note:
Dear Jeff,
… Alden suffers from OCD and Tourette's Syndrome, having strong motor and vocal tics (head jerks, eye rolls, shouts, leg kicks, etc.). As a parent, there is nothing more difficult than experiencing your child suffering and struggling. There is no cure. Medical / therapy treatments have thus far proven to be ineffective. The only thing that I have seen help so far are your meditations. As we settle into the practice, about halfway through I witness his tics lessen. There are times by the end when they stop altogether. We are trying to integrate the lessons into everyday life and are making progress … Alden must often feel like his body is just doing its own thing, acting out on its own, separate from him. It seems like your meditations offer him some moments of being in his own body, some moments of being able to feel and be connected, some moments of autonomy and calm. For someone with Tourette's, this is powerful stuff.
…Alden wants to thank you too. He draws rat characters... 1000's of them, each one different (like Ghost Rat, Flat Rat, Disco Rat, Baseball Rat, etc). He wanted to draw Jeff Rat for you, so I am enclosing it with many thanks.
Stephen
Dear Stephen,
Your letter had a powerful impact on me … Maybe I could write a meditation specifically for Alden? Let me know which meditations seem to settle him most, and perhaps also which parts … Alden sounds like a radster, just like his dad. “Jeff Rat” is now on my fridge.
Warmly,
Jeff
Jeff,
Thank you … for sending the photo of Jeff Rat on your fridge. I showed it to Alden and his face lit up. I just spoke with Alden to ask him what aspects of the meditations settle him the most. We’ve had many other conversations over time, so I think I can offer some parent observations too.
As a preface, we recently discovered one therapy to couple with his mindfulness practice. He has learned CBIT (Comprehensive Behavioral Integration for Tics). This therapeutic approach has offered him some management tools. However, it is important to point out the paradox. CBIT is a therapy that identifies the initial urge and then implements a competing response to “block” the tic. It works as a tool, but it takes a good deal of mental and physical energy to pull off. Conversely, meditations allow whatever is there to be there without judgement or battle, letting sensations come and go. Meditation and mindfulness lessen tics, but in a very different way than CBIT. CBIT seems to help with the physical manifestations of the tics, while mindfulness seems to get at the underlying causes, such as anxiety and OCD. The combination of the two approaches is offering him some strategies depending on the specific environment.
Alden says that focusing on the breath is relaxing for him, as well as body scans. He chooses his hands most often as his home base (sometimes focusing on the warmth in his hands). He prefers short moments of silence as opposed to long ones… There is something comforting about the added guidance that relaxes him more. He says he likes the ones where he can picture himself in an environment.
For the body scans, he likes tensing and holding muscles and then relaxing them as it progresses through the body. I noticed that at the beginning of any given meditation he often has a few very strong tics, almost like he is shaking out what is there before he settles in. You had a meditation where we kinda danced around and were completely ridiculous with our bodies flailing… We laughed together and he seemed to enjoy that shaking out. I think it was similar to the tensing/release scans, and mimics that initial ticing that he needs to do. For Tourette’s, maybe it could be helpful to incorporate a physical release “shake” or tensing towards the beginning prior to settling in.
He also mentioned that he liked the meditation that sends love to yourself.
When we did this meditation together, I struggled to not completely break down, especially when you said "it's okay little buddy". With severe tics, I can tell that Alden often feels separate from his own body. When some bad tics were peaking, I witnessed him hitting himself and yelling at his body as if it were not him, trying to get it to stop. I earmarked the self-love meditation for frequent use because I think it is so important for him to send love to himself - to see and feel his body as his “self” instead of some “thing” acting on its own accord. I think the breathing, the body scanning, and the home base of his hands are some aspects of grounding and being in his body… Then sending it love and kindness while accepting whatever is there as good and normal… Those things make it all settle and calm by the end.
I hope these anecdotes help with the neurodiverse writings you are embarking on. Alden was excited to share his observations, as well as I. Many thanks for offering us this opportunity to share.
Take care.
Stephen
More back and forth followed, with more detail. I then created a “Daily Trip” meditation on the Calm app for Alden called “Some Body To Love.” I got this response:
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