Last week I had a really tough mom moment. Ty was caught in a bad tic cycle and I was in my room listening as his tics continued to increase. I walked out into the hall and he met me halfway holding his arm across his mouth.
“Mommy I don’t know why I am doing this! Do you know why I am doing this?” My heart broke.
I held him on my lap and told him again. I have regretted my words though. I wasn’t anticipating that question from Ty so I scrambled for an answer and told Ty that tics were kind of like a voice inside telling him to continue grunting and it was something that he couldn’t stop. I assured him it was okay and that he could feel free to grunt as he needed and not worry a thing about it.
The only reason I spit out the “voice in the head” thing is because in all my reading, so many describe it that way (or say it’s an urge to break a social rule kind of thing). I don’t have any appreciation for either of those definitions. They make it sound like my child is hearing voices and more tempted to “sin” than others.
My perspective as a mom is completely different. In the first place, we all struggle with temptation. However, anyone with impulse control issues has a more difficult time because they don’t often think about the choice BEFORE they make it. Their sequencing is different. Also why I am convinced that Ty doesn’t often display much shame or guilt. He often acts on impulse so he doesn’t carry the guilt over the choice – because in many ways he didn’t cognizantly make it. (This is not true in ALL cases – sometimes he is just simply FIVE ).
In the second place, Ty is not experiencing these motor and oral tics because of a “voice in his head”. Now…if he were having tics stemming from OCD I think that could be a vague but somewhat accurate description. As in the struggles he has to resist touching things. I think he is cognizant of the DESIRE and then in impulse acts on it. But the shaking of the head and the grunting/throat clearing? Most of the time he is completely unaware of it. It isn’t until it gets really bad that he takes notice.
I think the reason people describe it this way though is because eventually, when a child becomes socially aware of it, and then can feel the tics coming on, in their effort to physically stop them – it “feels” like an impulse they can’t resist – thus the “voice in the head” description.
At Ty’s age, I would describe it as a sneeze. He may have the ability to hold off a sneeze but most children don’t realize it so they just do what comes natural – they sneeze. Try telling a child they aren’t allowed to sneeze.
When he is older and his awareness grows, it will be more like an itch I think. He will feel the itch, and at times have the power to refrain from scratching (maybe) for short periods of time, but eventually will have to scratch.
His awareness is growing a little bit already as illustrated by the following:
* At family camp he asked my mom if she knew what a tic was.
* Meeting me in the hall and asking me about it while covering his mouth as if to stop it.
* Covering his mouth and hiding his face in the restaurant the other day. That hurt my heart to.
We seem to have good days and bad days. Yesterday was pretty quiet but I hear it creeping up right now as I right. Morning time is usually very good but late afternoon and then into bedtime it escalates with the worst being shortly before bed.
I am asking why to. Not “why did this happen” or “why did God allow one more thing”…but the scientific WHY. What is the biological/biochemical trigger? What is short circuiting to make this happen? I want specifics. I want a neurologist to draw me a map of the brain and explain to me exactly how this works – how Ty’s hemorrhages affected x,y,z areas that are responsible for x,y,z, and why the outcome is ADHD, OCD, SPD, and TS. I want to know. I can’t find that kind of information anywhere. I am wondering if it even exists. I suspect not right now. Would it change anything? Probably not but better understanding equips for better solutions doesn’t it? I know I can’t “fix” this but I do want to help and heck if I know what form “help” will come in. I have a call in to The Crossroads Institute. They say on their home page:
We believe in an integrated approach to balancing the brain.
To do this we use a full neuro-bio-psycho-social model.
Our goal is to gain objective, evidence-based insight into brain function and then create measurable, proven solutions to help reach your full potential…without the use of medication. We would rather fix the problem at the root cause;not just mask the symptoms.
They work with kids with autism, asperbergers, OCD, ADHD, SPD, Mood Disorders, Learning Disabilities…a large scope of neuro biological issues. They also say:
Our NeuroGeniSys Process and Procedure measure over 293 different dimensions of brain activity as it relates to ability to learn, concentrate, control emotions and regulate responses.
Depending upon what has been blocked and how the information has been filtered will result in our perceptions or distortions of life. These are experienced as learning difficulties, social inadequacies, under achievement and distorted realities which reflect in personality quirks.
The data collected from the assessments is evaluated by our team of professions (neurologist, electophysiologist, neuro-physiologist, neuro-developmentalist and licensed psychotherapist) and summarized into a customized Crossroads NeuroFunction Profile and Report of Findings.
The analysis and recommendations are used as a guide for programs, protocols, activities and therapists targeted to each client’s specific needs.
That is the kind of information I want. Show me what the root is specifically and then tell me what I can do to help theraputically rewire/recircuit. The brain is amazing and I believe so much can be done…if only we know WHAT. Who knows how much this costs though…sinking feeling about that. Still I gotta check it out.
On a funny note (sort of), Ty heard me talking about Asperger’s Syndrome to Sweetie last week. He (unfortunately) loved the word and I have heard him saying “Ass-Burgers” all week. Trying to ignore that for fear that attention to it will only cause him to repeat it more. Have I mentioned how much he repeats repeats repeats repeats repeats repeats repeats repeats repeats repeats repeats repeats repeats repeats repeats repeats repeats repeats …..;)
There is a 3 hour TS seminar available online that I was watching (Dr. Walkup from John Hopkins) and he said that he often sees more Aspergers patients in the TS clinics than TS patients because their symptoms can be so difficult to differentiate. I have wondered in the past if Ty might have Aspergers – especially considering that he doesn’t seem to pick up on social clues well. I was quite thoroughly convinced that Ty does NOT have aspergers though after hearing one of Dr. Walkup’s comments about it. He equated children with Asperger’s to be much more like cats than puppies. They are more emotionally distant, avoid eye contact and touch, exist alongside you but not necessarily engaged with you. Ty is most DEFINITELY a puppy and NOT a cat. He must not have Asperger’s.