Guest blog by @themadhattens
We find the hardest thing to deal with is other people, the staring, the comments, the looks, the misunderstanding and the judgement. As parents most of the time we ignore it and bite our tongue, which can be very hard. Sometimes I want to snap at them and let them know that they aren’t helping, they are in fact making the whole thing more stressful for all of us. My children are not misbehaving in that moment, they are over stimulated and not coping. Sometimes what my child needs is to leave wherever we are, whatever we are doing, sometimes an aid of some description like headphones or a fidget toy will help, sometimes its space they need, sometimes time.
Most of the time I cannot speak to them or touch them as that’s just further stimulation they don’t need and it makes it worse, we just have to wait it out for however long it takes. I am not ignoring them, I’m not being a bad parent, I’m trying to give them the space and time they need, what I am trying to do is ignore any rude or ignorant people around me so that I can stay calm for my child when they need me.
The boys, most of the time, are unaware of the other peoples judgements thankfully, they don’t like to be around people so we try not to go anywhere that will be busy or ‘too peopley’ as they would put it, they keep their heads down and ignore others, which also leads to problems as then people moan they are rude. Our eldest daughter however isn’t quite so lucky.
She will pick up on all of it. She has struggled with anxiety since she was really young, and in last couple of years started ticcing. It was just some minor motor tics at first, excessive blinking, flapping her arms etc. Wasn’t much of an issue, and was barely noticeable. Within a few months though this led on to a neck twitch and much more obvious arm flapping and then last year it really escalated. She now has major motor and vocal tics, including coprolalia, which is basically saying obscene things and swearing, it’s the symptom most people associate with Tourette Syndrome but it actually only affects 10-20%.
She tics a lot now! It causes her pain, distress and has also led to some not very nice altercations with other people who didn’t respond well to something she said. She is now afraid of being around anyone who doesn’t know and understand that she doesn’t mean a word of it. She is actually a really quiet, kind and shy girl, always has been, so this confrontation and attention she now gets is the last thing she would want, so this has affected her anxiety even more. She is currently on a waiting list to be assessed to see if she is on the autism spectrum too. She is 15yo but at the moment requires constant supervision, it feels like she has lost all of her freedom. Some of her motor tics have put her in dangerous situations a few times now but thankfully one of us has been there to prevent anything serious from happening.
For example some of her motor tics mean she randomly jumps, flaps, hits out or falls to floor with no warning, its all completely involuntary and she is unable to stop it. All this is hard enough at home but if we are out of the house this is really dangerous, especially near roads and rivers etc. If she is having a tic attack, lots of tics repeatedly for a while, she becomes completely unaware of her surroundings and can’t focus/concentrate on anything else other than the tics. Her life has completely changed and she is having to adapt a lot, as are we. She is constantly apologising for something she said or for accidentally hitting/hurting one of us, for breaking something and is understandably very frustrated.
CAMHS have been amazing for the help they have given us so far and the help they give other families like ours but the waiting lists are so long, so many children and families needing the help and support, now more than ever after the last 18 months, due to the pandemic. We are still at the beginning of this journey and learning everyday, educating ourselves so we know more about Autism, Tourettes, anxiety etc, how we can help our children, how to cope with it all and how we can raise awareness so other families can hopefully get the help they need too.
There is currently a petition aiming to offer help and support to those living with tourettes. More signatures are needed, so if you liked to know more or offer your signature then please click here.