As we reach our second year I feel it’s important to talk about how we became who we are today.
We all have a story, a reason for why we choose to fight the battles we fight. Mine like most of yours is simple, a mother’s love!
When my husband first turned to me and said “do you think Sam’s quirks could be Tourettes?” I said do not be stupid, he does not swear! That night I laid in bed on google reading up on Tourettes Syndrome. Everything clicked in to place, as usual with the hubby once I agreed with his suspicions he changed his mind (lives to disagree with me). I then made contact with the national charity Tourettes Action and chatted to a lovely lady for well over an hour who advised me on what to do next. She said I should keep a diary of tics and behaviours as the doctor would want to see tics for the past 12 months and to get a referral from the doctor.
I went to school the next day armed with a diary and all my concerns, school agreed to write everything down and they referred to CAMHS, my GP referred to community pediatrics. This was back in 2013 and no 2 year waiting lists, both appointments came through within 6 weeks. I was able to trace back tics and OCD behaviours going back 4 years, school’s diary was coming home empty every day. One day about 2 weeks before my appointment school rang me concerned, they said Sam appeared to have some kind of episode in the playground, he froze, his hands went to his face and he started shaking quite bad. I explained that this was his main tic, the one I had explained to them but they had never seen, the following week his diary was full.
At this time Sam's tics where very few, he had his face tic mentioned above, he had his happy feet dance where he would shuffle on the spot hold his hands out to the side and hum, and he ground his teeth and cracked his knuckles. We also had some behaviours, he was obsessive about certain things, collected everything he could find on Moshi monsters, organised things by colour, couldn’t cope with disappointment and would have serious “tantrums” and struggled with loud noises, also meal times were a nightmare.
His first appointment was with CAMHS, the lady we spoke to openly admitted she had no idea about Tourettes and discharged him on the spot. The next appointment with community pediatrics' was a few days later and a totally different story. We had the lovely Dr Kamal. He asked me straight away what I thought the issue was, when I told him I had read up on Tourettes Syndrome he just nodded and said yes. Dr Kamal told me what I already knew, and asked if I wanted him medicating. I explained that at the moment we were happy to just continue as we were but that my priority was to have support in place in case things worsened as I had read they could. Blood tests showed that Sam was low in iron and Vitamin D and was prescribed medication but other than a yearly review we walked away with no more than a diagnosis.
I had details of a local support group run through Tourettes Action from the phone call I had previously, I had not wanted to attend until we had a diagnosis. I went to my first meeting with my mum to check it out, John facilitated the meeting in the back of a shop and there was a small group of people who attended, listening to other peoples stories was an eye opener. I continued to attend these meetings that were held every 3 months and in time took over the facilitating of them when John became unwell. I was under no illusion that I could support anyone else, but I did believe that everyone helped each other. It was at one of the first meetings I ran that I met my partner in crime Bev. We were only a small group of about 5 families, some weeks it was just myself, Bev and Keri. In the start I used to fear that Sam would develop the Coprolalia, I thought swearing was as bad as it got. Until listening to these parents and adults talk about how bad it really got, suicidal episodes, self harm and depression, this is what people do not see. Over the years with fundraising events and Facebook the group began to grow, along with friendships.
In 2017 things started to change for Sam, suddenly everything had stepped up a notch, he was struggling more with anxiety and OCD and more and more tics were developing, at this point Sam was 10 years old, a typical age for an increase in symptoms. We held a Christmas party for the group in the December, it was a busy event, lots of new faces, loud noise and bright lights. Sam came home that night and had his first tic attack, the worse 4 hours of my life. The attack looked like a seizure, he could not communicate and his little body would not stop ticcing. It seemed to be a one off and life carried on as normal. More and more people where seeking support, explaining the difficulties they were having in school. I contacted the national charity to see if they could send anyone up to Hull but they where only a small team and instead offered training to go in to schools and give awareness talks myself. A few of us travelled down to London and it was there I met the lovely Elizabeth who became a firm friend and great support. I left London with a determination that things were going to change.
Sam started doing his SAT’s and suddenly our lives were turned upside down. He had more tics attacks and ended up in hospital, and his anxiety hit another level, he missed over 30 school sessions that term. I managed to get Sam to the community pediatrics and saw a locum, she prescribed Sam Clonidine and chased up the referral to CAMHS that had been put through in December after the first tic attack. We were told the waiting time was about 6 months but hoped they would be able to help with Sam’s anxiety, OCD and his sleep. At this point Sam was still in our bedroom and slept around 4 hours a night. The first night Sam was on Clonidine we saw something different in him, when I laid next to him in bed I could hear him swearing under his breath, he seemed oblivious this was happening and I did not mention it. The next day we took part in a sponsored walk and as we met with the group in the park Sam suddenly started shouting coprolalic tics and jumping and lashing out, it was one of the hardest days so far Sam has had, if it had not been for some good friends who ran an open gallery providing him with the chance to relax and draw, I do not doubt he would have had a tic attack in the street. The next week was a whirlwind, Sam began hearing voices and seeing things, he became scared of his own shadow. He played out one day with his friends and when I picked him up he was really upset. He started arguing in the car and went into a full meltdown, I pulled into the garage for petrol, as I was filling the car I turned and looked in the car and saw Sam with a shoelace around his neck. Sam told me the voices told him to do it, that he should kill himself. I rang CAMHS desperate for help, it had been 4 months since the first referral, even when explaining what Sam had just done I was told it was not urgent, that he had not intended to hurt himself it was the voices controlling his actions. The following morning Sam was on my bed screaming at the voices to shut up, we knew it was the medication but I still needed advice from my circle of support to reassure me that I needed to stop the tablets. Sometimes we just doubt ourselves, society tells us doctors know best but as parents we really need to learn to listen to ourselves. We stopped the tablets 10 days after starting them after I spoke to the doctor, she told me it was fine to stop but did not think they were the cause, she also said she would ring CAMHS again. Gradually things started to calm down, the voices eased off but as they are related to Sam’s OCD they do still occur from time to time.
Myself and Bev started talking more and more about setting up a charity, we talked with our members and on the 28th October 2018 myself, Bev, Rich, Gary, Diane, Karen and Anna sat down and signed the constitution of TIC. Agreeing that as a charity we would deliver awareness talks and commit to providing a safe place for people to meet. Myself and Bev went on so much training we filled our new office walls with certificates. In that first year we became registered with the charity commission, delivered awareness to over 200 school teachers, pastoral care and SEN leads in over 26 schools. Our online group grew from 50 members to over 200 and we moved into the Ings resource centre.
In the last year our numbers have grown even more, we have landed 3 years of funding from the National Lottery, during Covid we were able to support over 50 families providing items to help overcome their biggest difficulties at that time. We have created alliances with health care professionals, teaching professionals and other Tourettes support leads around the country and even the world. Some of our trustees have left us due to other commitments and we have been joined by new trustees. I would like to say life is better at home but we still have our problems, Sam was finally seen by CAMHS in September 2019 (15 months from them receiving the urgent referral) and he went on medication for his anxiety (Fluoxotine) after seeing the Psychiatrist in June. He is on melatonin for sleep and since medication has managed to attend school almost every day. Sam’s EHCP was started in primary school but the paperwork for that along with his ASD/ADHD referral is in the hands of the SEN at school who has been on sick since before lockdown. As the waiting lists are currently 2 years we are in for another long wait. We had a blip a few weeks back when Sam self-harmed during a meltdown, and his OCD/tics are currently quite risky but all in all Sam does well.
My heart breaks every time we see another family struggling, but the difference is that through TIC we can try our best to offer support where we can. No family needs to struggle alone, no adult needs to feel isolated from society. We are missing our monthly face to face meetings and attending those in Manchester and York, and no doubt by the time we can all meet again we wont even recognise many of the children. My friends and family I am sure get sick to death of hearing me talk about Tourettes Syndrome, but it has become something I don’t just live with but also work with. Tourettes Syndrome is hard for the person living with it and those who live along side it! Along with the down sides of the condition it also has it’s upside, my boy has a cracking sense of humour, a huge heart and caring nature, it has also brought me the opportunity to meet the most amazing people, my Tourettes family. As 2021 approaches I want you all to watch this space, we hope to be sharing news of great progress but we need you to carry on supporting us and keep everything crossed.
Happy birthday to TIC and all those who make it what it is!