Updated: Jul 3
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We are almost seven months in to our new adventure, the one where the tics started and haven't stopped. I guess we're a part of that trendy Pandemic phenomenon, the 14 year old girls all around the world, who seemingly overnight, changed. I went from the single parent of a shy, slightly anxious, moody teen to a single parent of a shy, slightly anxious, moody teen with tics. Oh boy, has this been a journey. So let's focus on what I have learned.
Say you've got a major health problem. You go the doctor, maybe you have to get referred to a specialist. You get the help and advice that you need in this way. No. Not this time.I've learned that I cannot rely on the patchy knowledge on offer to me via the official channels. I read up, the good stuff, articles written by specialists for doctors and sometimes, I find that a leading expert in sudden onset tics has given exactly the opposite advice we have been following. I have armed myself with the correct medical terminology, however upsetting that might be (self-injurious behaviours, anyone?). So I can keep the professionals up to speed without wasting appointment time. By the time our long-awaited initial screen appointment came up with CAMHS (more than six months after we had been referred) I knew what I wanted (referral to Great Ormond Street and potentially medication for Anxiety only available with their say-so). So let's wait and see on that one. I'll not hold my breath and I will not rely on someone else to help us live our best life, because its pointless.
So how to cope in the meantime? You have to live a bit day to day. Try to find a way to process the dramas healthily. Once, my mum was feeding me all sorts of really difficult information about Bo (short for Boadicea, my daughter, not her real name). This was at work. By the third phone call, I snapped, burst into tears and, in the few minutes sobbing otuside thought 'Nope, I can't do this here.' I want to work because I am concerned that I may always need to support her. I'm ready. So me and my mum had a chat. Problem solved. I still shed the odd tear at work, but the people in my office are supportive and most of the time I put on my brave face. If I'm wearing bright clothes, its generally a sign that I perceive trouble ahead.
Keep moving forward. Keep trying new things. If I was that great parent, who could get their kid to do all the right things, I'd like to throw all the dross she watches on the net, all the games and all the youtube, in the bin. I'd like her to try making big changes to her diet. To see if it has a positive effect. But she has to want to do this.
I started writing my own blog, from the very beginning. Its thousands of words long and to be honest, I've published very little of it, to all three people who have seen it! But it felt good to write about the experiences.
Reach out to the community. When I received the dreaded call from school and I could hear my daughter in the background, who the last night had just been making the quietest little sounds, suddenly exploding into tics, it was hard. I immediately reached out to Tourettes Action and the lovely David phoned me about ten minutes later and could not have been more helpful and supportive. I've attended a parent support group that they run and also have accessed help from TicTock Therapy. Do the same. They're brilliant.
I couldn't face endlessly updating my facebook page with how drastically our lives had changed and it didn't feel right at all, but having a dedicated instagram page has also been an important way to find out more about how community, our struggles, our successes and tips for ways to manage tics. It gives me a better understanding of what my daughter is going through. On the days I don't feel I am helping Bo, I can at least, through that, spread love and support to others in our community.
Own your worries. Easier said than done! I'm still working on that, to be honest. I don't want my worries to own me. I find ways to escape from them. I've exercised regularly for a couple of years now and that is great for stress (still hoping Bo will catch this particular bug in a major way. I live in hope). One stressful week, I had to do a jigsaw for about 20 minutes every day! That was a lot more healthy than the time I drank to get hungover, because everything seemed so bleak. But I owned that dark day and I knew I had to be stronger, for both of us.
I'm still here. We're still here. The future looks different and every day we are more ready to face it.