Jack has what his psychiatrist calls a "travelling tic".
Tics are fairly common in our community. They can be behavioral or neurological (or both). Jack's change after about a month. We've seen about 13 or 14 (a nose wiping motion on his sleeve, a quick inhale, hand flapping, page turning/flipping a book, etc.). It's a release of energy, anxiety, or stress. About a year ago we were in the tic that we called "the face". Jack would scrunch up one side of his face, closing the eye, grimacing the mouth to one side, and then loving the reaction as his eyes refocused.
Stims, tics, noises don't bother me too much...
But I hated "the face". Yes. I hated it.
Why did I hate it so much? Because it mimicked seizures. It was distracting in class and looked painful. The little girls in his class would always say something like "are you okay?" and the little boys in class would mimic him doing it to make fun of him (on a side note, Jack thought the little boys were playing along with him... because they would do "the face" and laugh... he does not have a good understanding of the difference between laughing with and laughing at... let me re-phrase that: He has NO understanding of the difference between laughing with and laughing at. Perspective processing disorder. if you didn't read my blog on Autism as Perspective Processing Disorder, please take a moment to do so by clicking on that hyperlink).
But my biggest concern was seizures. We called the pediatrician (repeatedly) requesting yet another referral to a neurologist... only to be denied (again) because "In California, neurologists do not treat autism".
But they treat seizures!!! Pardon my visceral, gritty reaction, but fuck them. For another blog, but there is something incredibly wrong with a person (underwriter) sitting in an office overseas somewhere writing a letter denying a REFERRAL from a physician because they don't want to pay for it. Another time, Jaye, another time.
We gave up on that fight after concluding ourselves and with the help of some physician friends we have that he was not having seizures, it was a tic.
Luckily, Jack (and us) has a psychiatrist. She saw him regularly and had noticed "the face", and DOES treat things like tics.
But Jack had been making the face so badly at school one day that the school nurse sent him home because he was "clearly having seizures". I brought Jack home, sat him on his bed, and had probably the best conversation I had ever had with him about why daddy didn't like the face, about what a seizure is, and why that scared daddy. I asked him to try something.
"Let's see if you can go 2 whole minutes without making the face... I'll time you"
And he sat quietly for 2 minutes without making the face... and was proud of his accomplishment (as was I).
"Now, I want you to squeeze your hands together for the next 5 minutes every time you feel like you want to make the face"
Classic re-direction. The next 5 minutes were some of the longest of my life as I watched my boy stare at me and squeeze his hands together every thirty seconds or so... but smiling every time he did. The face never showed up. It was painful to watch him try so hard, and concentrate so intently on his hands, but he did it. It worked. The tic could be re-directed.
So, I called the psychiatrist about the face the day he had been sent home (which, ironically, we were in his IEP when she called me back, weird timing, eh?) And she told me that whether it was behavioral or psychological she would approach it the same way initially. She told me to try and re-direct it and see how he would react. There were medications, but she didn't want to put Jack on any medications before we had exhausted behavioral techniques first.
I felt like the smartest and best dad in the world when I told her I had already done that... with some success.
The face moved on to a new tic (which was kind of a "dipping" movement from the hips that looked like a guy trying to "walk out" a wedgie).
About a month ago, Jack's travelling tic took a new direction for all of us. It became vocal.
Jack will "hum" to himself. A very rhythmic four-syllable hum... Mmm Mmm Mmm Mmm (which is amazing that I found the song that titles this blog).
It's fairly quiet, but definitely audible... and quite distracting if a class is trying to take a test.
We are confident it will move on to something else, but I've had several talks with Jack about why the humming is distracting and he should try to re-direct it at school. But I also was reassuring to point out that he can hum anytime he wants at home. That it was fine. That it was okay.
He said he would try.
A few weeks ago Jack and I were sitting in the backyard reading and listening to music. He was very engaged and we were having an exceptionally connected moment. He excused himself from our bench and went over to the stoop by the kitchen door and sat by himself.
"What's going on, Jack?"
"I just want to be alone"
I respect that and turned the corner and told him that was okay... we all like our alone time.
The moment I was out of sight I could hear him humming.
And I sat down, out of sight, on the back steps and cried for him. Had I been too tough on him? Did he think his tic shamed me? Did he think I would be angry? Did he think that I didn't recognize how hard he had been working to control it? Had I failed him?
I pulled my knees to my chest and wrapped my arms around them and out loud said four very simple words:
"Mmm Mmm Mmm Mmm"
Jack, you could not make me more proud.