Sam gets diagnosed
Sam (our son) was six when he was first diagnosed with Tourette’s syndrome (he is 14 now). It was not easy to get Sam diagnosed, I had to be extremely proactive which is difficult when you are sobbing, worried and not sleeping most of the time. What I found difficult was trying to explain about my son’s tics when he wasn’t ticking at the time (which always seemed to be the way when talking to professionals!). There was always a worry at the back of my mind that I would not be believed and would pick up a label from the “professionals” as a “neurotic, over protective parent”
The challenges for our family
Sam began to attend our local primary school, it didn’t take long before the school were constantly contacting me complaining that Sam was behaving in a “strange manner” and that he was making noises and movements that was disruptive to the rest of the classroom. The school would often punish Sam for not fitting in and keep him in at play time for “his own safety” because he upset other kids. This had a terrible effect on Sam and he started to get really angry at school and worse at home. He was not learning as he should have been because the school was such a hostile environment for him. His self-esteem and confidence took a heavy blow. The last straw came when the school planned a trip but didn’t tell me. All his class mates got to go on the trip and Sam had to stay behind (just in case he did an “embarrassing tic”). I then received a letter from the school saying that they could not meet his needs and that Sam should leave the school.
I was in a state of shock at the way Sam had been treated by the school. It was like the rug had been pulled out from underneath us. I guess from that point the worry set in, the doubt set in, the self-criticism (of my parenting skills) set in. Then I was imagining 20 years ahead – he’s not going to have a job, he’ll never get married, no one will love him…and this was morning, noon and night. I was sobbing constantly and thinking about suicide because I thought that maybe if I were not here Sam’s dad would be able to get more help (remember I was ill and not thinking straight as suicide is never the answer).
I knew what the school had done to my Son was wrong but at the time I had no idea what the Equality Act was all about and what the school was doing was disability discrimination (Tourette’s syndrome is considered a disability under the Equality Act 2010) so I decided to get some legal advice. I was told I did have a case and so I took the school to tribunal. I work harder than I ever have in my life on Sam’s legal case and we won!
I was emotionally and physically ill going into Sam’s tribunal case and after 9 months of trying to put a tribunal case together, and trying to pretend I was okay, keeping the house going, cooking, being happy for Sam…I just stopped caring about myself and finally I just broke down.
Who cares for the carer? You are the ones that strive each day to bring about change, you are the ones that give so much love and energy to all that you do for others. However you must care for yourself because I never even thought about caring for myself until I was hurting so much I knew I had to do something or risk becoming completely invisible and broken. I forgot about myself. I forgot to live, to feel part of something other than constantly worrying about Sam’s Tourettes.
It took me a long time to climb back up out of the mire but all the while I kept trying to do something a little different each day. One day I would try to eat a little more, next day wash my face or leave the house and so it went on. After a while I began to think about all the things I did to try and feel alive again and I thought I would have a go at writing them down until I found I had written a book called Second Chance Day.
I have written this book for you. It is meant to give you some strength and to remind you, you are stronger than you think. Please don’t give up as I nearly did. I allowed Tourettes to become a monster in my head but really it isn’t, it’s just part of who my son is and when you love someone you have to love all of them and embrace their differences.
If you would like support specifically with Tourette’s, you can contact Tourette’s Action for advice support and to find out if there is a local support group you.