Monday, 10 February 2020

Tourettes, Tics & The Complex Vocal Tic

Tourettes, Tics & The Complex Vocal Tic

This weekend I think I have felt the most parent guilt I have felt in my 8 years of being a Mum. 

I realise that I have a very uniqie parenting scenatio when it comes to Leo, his Tourettes and the tics that come out to play with increased anxiety. I never know when we are going to get an influx of the dreaded vocal tics, sometimes I can pre-empt them with the end of the school holidays, which 9 times out of 10 the root cause.

Then there are instances like this week, when it happens and I don't really know why. 

I noticed at the start of last week that the high pitch sqeal was more prominent. Each day after school it would increase in intensity. Then by Friday we faced a full on tic explosion, on the scale we faced when Leo returned to school after the summer holiday's last year...

From the moment Leo got in the car at 3:15 we had high pitch vocal squeals. The kind of shrill squeal that hits the ear drum and makes it shake. The kind that should not be mixed when you are driving a car. 

These tics repeated every 10-15 seconds, how do I know that? I know because I heard each and every single one, and I timed them. 

This happened all night Friday, all day Saturday (expect for the trip into town), all Sunday and still going strong Monday night. 

Friday night was by far the hardest night. 

The constant tics hurt my ears and my head, and there was no where to go to hide from it. Leo was in his room, but this is where my intense parenting guilt comes into play. I didn't want him to feel like he HAD to be in his room, but at the same time I was finding it hard to sit next to him because each squeal was going right through me.

It's almost like a smoke detector that beeps and beeps, before you have to change the batteries. Only we can't stop this. 

There was really nothing I could do for the best. We couldn't just cuddle up and watch a film, I couldn't read him a story. I was at a complete loss of what to do. Instead I let everything get to me and ended up in tears because I had no where to hide, no idea what to do for the best.

It's a catch 22 situation, I couldn't and can't do right for doing wrong. I don't want Leo to think that he couldn't or shouldn't tic in his home, in his safe place, but at the same time I just needed the noise to go quiet and to have a little bit of space, time without my ears feeling like they were going to split in two. 

Then I think about how he must feel, his throat must be feeling so sore, but he just gets on with it. Not once does he complain. I remind myself that we go through these phases, and yes they are hard but we always weather them. 

Eventually the squeal tic goes back into hibernation for a while.

Im frustrated that I can't do more for Leo, I have put in in front of CAMHS (Children & Adolescent Mental Health Services) in the hope that I can obtain CBT (Cognitive Behaviour Therapy) for Leo, but they declined on the basis that Leo's mental health wasn't 'in need' enough. It is like banging your head against a brick wall over and over again until it bleeds. Every avenue I look down and explore for Leo often results in a door banging shut in my face.

I would hate for Leo's mental health to deteriate to the point where CAMHS might think 'ok we will see him now'. I had been pre-warned that unless your bleeding, they will quite simply not see you. I am sad to report that this is exactly what I have come to find.

We are coming to the end of term, and I can't put my finger on exactly what has caused this particular flare up. I have spoken to him and asked how he is feeling, but all I can get is that he is worried about his school work, Math's in particular. Having spoken to his teacher though, he's his usual self within school, Leo supresses tics throughout the day so no one ever hears them there, but when he comes home, I get the full on storm of them.

As I write this the tics continue...

We fly to New York on Sunday, which is an 8 hour flight in close proximity with lots of other people. The thought of this right now makes me feel very anxious. So much so that I have actually been in touch with Virgin Atlantic who were really lovely. They have told me not to worry about it and advised that they can board us first or last depending on what will suit Leo better, and even asked if there is anythig else they can do. 
 
The only thing I can think of is providing all of the other passengers with ear plugs!

I am hoping that come Thursday when Leo finishes for half term, the tics may relent their hold on him. That we may be able to enjoy our holiday without Leo being held hostage by his tics.

This won't be the last time we go through this, and god knows it's not the first. It's the first time it's made me cry though, I just wish I could make it all better for him, to take them away.

We have been out shopping before now and the tics have happened in public, and we do get some looks. Mainly the kind that look to me to stop my child making such a noise, which of course I can't and won't try. When I ignore the tic (I never draw attention to them or mark them), the look changes to one that second guesses me and my parenting. 

They aren't to know, but I always wonder what I might say to someone who takes the judgement a little further than staring, and actually dares critisice.

I don't think I would be able to hold back...




No comments:

Post a comment

I love hearing your thoughts, so please feel free to leave me a comment :)