Some of you are probably scratching your heads and saying “Why this? Isn’t this an art blog?” Well, yes, yes it is. But the reality of Tourette’s Syndrome in my family impacts heavily on my art, ability to create art, and life in general. Life impacts art very heavily, so this is about how TS affects my family and my art.
By now many of you are aware that my son has Tourette’s Syndrome(TS) and all the fun side dishes that it comes with. But still the first question most people ask me is “Does he do the swearing thing?”. My reply is “Yes, he swears with alacrity and intent. Not because he has TS, but because his mother swears like a longshoreman.” The usual reaction then is “What does he do?”
Well let’s face it, TS is a many splendoured thing. There are a huge amount of things “tics” that those affected “do”. In my little guy’s case, when he was just 2 or 3 years old he would run in patterns and do a funny breathing thing. We assumed he had asthma (he does, but it does not manifest like that) and moved on. He also did other quirky things like eye rolls and little shivery movements, I assumed he was just being a kid and moved on. He also liked to sniff things…we called him “Captain Sniffy”.
When we moved to NZ, he started to have more eye rolls and sniffling sounds. We checked him for allergies. Yup, he has allergies, but the sniffling sound wasn’t part of that. The reason I know that it wasn’t is that it forms a pattern. I still wasn’t convinced that he was really too different than any normal kid. When he hit that 8-9 years old age, things started to really gain momentum. He made funny little sounds along with the sniffs, and there were funny jerky body movements to accompany it all along with some extreme eye rolling. I was a rotten parent and gave him crap about the activity… as it must have been distracting for his classmates and teacher.
But it really hadn’t hit home till we were driving home from school one day and I was watching him in the rear view mirror and saw a particular body movement that reminded me of a student I used to teach who has TS. Light dawned and I took him to the doctor. They referred him to the health group up here in Northland who deal with this sort of thing. So my son was totally angry with me for the whole process and repressed the tics… So nothing major came of it…
In the meantime at school, his principal had noticed that my son was having angry outbursts and was not able to calm himself down well. He referred us to a child mental health therapist who comes to the school and helps. And she does an excellent job with my son. They do art therapy and that plays to his creative strengths and they discuss ways to manage anger and behaviour during this time. I can see a big difference when he has had therapy. So those were the baby steps before the big blow up…
My son is now 10 and in Year 6 or equivalent of 5th grade in the US. He had a new teacher this year and was very sad to leave his teacher from Year 5. (Just as a note, this teacher has super powers with my son. She earned his respect and really made him grow as a student. But it was a difficult road for her. She is just really persistent.) But the new teacher has his own unique set of skills and while my son was very nervous, he was willing to try and have a go. The therapy and push for other services came about due to being in this class, as my little guy’s behaviour was not super. It didn’t help that there were a couple of kids who made it their life’s work to annoy my kid into an anger ball. So after a few more angry outbursts and general rudeness, the teacher couldn’t cope and neither could the principal. My son got stood down.
When I got to the school and collected my kid, met with the principal (who is a very decent human, before any ideas to the contrary start) and started to head home in the car…the tic explosion happened. My son had been repressing these tics for days, hours, etc. because he was embarrassed to do them in school. So he was ticcing a particular “throat clearing/harumph” type tic as well as one that made him look like Michael Jackson having a bad dance day, echoing himself and others, and couldn’t stop. He was in tears, choking, ticcing to the point his throat was raw, and at his wit’s end. My GP is excellent and she agreed to see him immediately.
Needless to say, she was horrified at the disaster that my son was and immediately called and scheduled us an emergency appointment with a paediatrician and “child youth mental health”. The stand down was the last straw for my overly anxious kid and it dropped him off the deep end. No parent should ever have to deal with this. It is horrifying to watch.
The paediatrician immediately saw the tics and all the behaviours rolling into one and informed us that TS rarely comes by itself. There are almost always co-morbids. The most common is ADHD… But OCD, ADD, Anxiety, Autism, and other sensory issues all can factor in. So we had to to the Connors3 test and a few more appointments with the child health services. And have a diagnosis of Tourette’s Syndrome, ADHD, OCD(mild), Anxiety(extreme), and sensory issues. fun stuff.
Once we had that diagnosis and brought it back to the school, they were amenable to trying to help. The principal talked to my son’s class and the other teacher’s so that they would be aware of the situation. The other option that happened was that my little guy could choose to be in his former teacher’s room if he wished as she was teaching Year 6 as well. He gave the newer teacher and his old class a week, and then transferred himself to his former teacher’s classroom. While I believe that you have to suck it up and deal with what life hands you, this is one battle that I was willing to let go. I figured it would help if my son got his diagnosis under some sort of control and then work to learn with multiple difficult personalities in new settings. So far he is doing well with his former now present teacher.
So how does this affect art? Well, the immense amount of time needed to deal with all of what comes as part of my son. My days are limited to between 9:30 am to 2:pm and often it is less than that due to doctor’s appointments, school meetings, and other follow up. He is a typical 10 year old, who would rather play Lego rather than do homework… But when eye tics start, reading takes 3 times as long and is exceptionally frustrating. So often, I help put things in place. We discuss therapy stuff…a lot. The anxiety levels my son displays along with other issues means that my son can’t easily fit into after school care or be left with just any friends (we do not live close to family, so it is not an option), so again limiting just what can be accomplished in a day.
My son also doesn’t eat or sleep well as a result of the conditions and medication. His appetite is somewhat wrecked by the medication for ADHD. (Before you jump all over me for medicating my son, walk a mile in my shoes first.) The sensory part of him wreaks havoc with his eating as well…it is like having a pregnant 10 year old boy. Smells, textures, colours throw him off and he won’t eat. Oh, and my DH has coeliac disease, so I am largely a short order cook. A huge part of my time is spent trying to think of things that my kid will eat and that my hubby can eat. (Former chef so really well educated about food, not interested in elimination diets either they just don’t work for everyone.) Sleeping is a nightmare at best. My son will tic himself awake and then anxiety takes over and he will come join us in bed…2, 3, and 4 times a night. (it doesn’t help that I have hot flashes as well) So, I only get maybe 20 to 30 hours of sleep a week, eventually causing an unhealthy crash. This does not contribute positively to creativity…sometimes it does, though… nothing like the silence of 3am to go work on something.
Painting and stitching really help relieve stress for me… I love the feel of working with fabric, there is something really soothing about the touch of fibre. Painting and spreading colour around is really uplifting and helps make life brighter.
Sometimes my creativity has to take different directions… I am actively seeking funding for a longarm machine so that I can work larger on my own art, but also quilt for others to generate income. One of the comments I received from several sources was “Get a job.” Unfortunately, I am a fairly undesirable job prospect due to limited availability and living in a rural area, there is a dearth of employment options. Self employment is probably my best bet. So my quest continues. Also watching my son try and sew on a regular machine while ticcing is fairly heartstopping…
That all sounds incredibly negative. And some of it is, it really is. But I wouldn’t trade my life or my kid. It does help drive my creativity whether it is choreography, paint, fibre…
TS and the other party issues are annoying (more so for him than me), but it permits me to see life from a totally different angle than that of most people. There is humour in naming the new tics that cycle in and out… He has a new one the “lick tic”, the “body bend”, and the “morepork” (named after the owl that makes the same sort of sound)… And that is not to say that he won’t get the swearing tic. I hope for his sake, he doesn’t.
One of my son’s tics is responsible for one of my newest pieces… May I introduce “Splat” made for the OMG group on Facebook. My next post addresses this piece.
One of the things that has been very helpful to me as well is Tourette’s Association of NZ or TANZ. So if you are reading from NZ and suspect TS may affect a friend or loved one, check out their site for more information! TANZ