I’ve written before about ‘Tourettes Mums’, the amazing mothers who fight tirelessly for their children who tic. But battling for your child day in, day out is physically and emotionally demanding. Here’s one mum, guest blogger Hayley Davies-Monk, describing her family’s struggle with their local school, and her search for positive aspects of their situation:
When Touretteshero asked me to write a guest post I was in a place where I just could not find any positives in our situation. We had attended a very heated meeting with my son’s primary school and the head had said such hurtful things about my children and my husband and me that it resulted in near on two full days of this mummy crying.
As with most parents of children with Tourette syndrome we (over time) develop an inner strength to pick ourselves up and carry on, to find the positives for ourselves in order to give our children the best outlook on a world that can be very unforgiving to them.
My son goes to a very rural village school with five classes covering ages of 4-11. My son is 9 and when he started there he was an average little 4-year-old boy. Just after his seventh birthday he developed a rapid onset of Tourette syndrome. Two and a half years on he has various motor and vocal tics including swearing tics which people all too rapidly associate with Tourettes and all too rapidly pass judgement on.
Spencer is a very sensitive young man with an enormous eloquence and empathy for others. I find it heart-breaking, when he is full of understanding for others, that he himself is openly judged and mocked. For the school it’s a huge challenge because they have known two different Spencers in his time there. Spencer is the first child at the school to have been diagnosed with Tourettes and it has been difficult for the staff to acknowledge that this is a “real” condition.
For the children it was difficult at first but they are resilient and amazing and they understand Spencer’s challenges better than most grown-ups. For the parents of these children it is an unspoken challenge. Some don’t want their children around a child who says bad words. Two years ago Spencer stopped being asked round to play and stopped being invited to birthday parties. If I asked a parent for a play date I began to get the most ridiculous excuses. If I asked a parent outright if they had any issues or would like to know more, I would get a cover story. Who wants to openly show their prejudices, perceptions and judgements when they know they’re fundamentally discriminating against a child?
We have had an enormous breakdown in communication with the school which has been building up for some time now. The judgemental attitude of some narrow-minded professionals has been laid bare in the last week. It’s not typical of all adults within the profession but it is certainly true of this particular school which is headed up by someone who tries hard to achieve targets and figures within budgets, but rejects every offer of help that’s held out.
The school is failing to accommodate a child who is different, a child who has gifts and life experiences most of us will never be able to understand or experience.
I’ve painted quite a sad picture that looks far from positive. It took me a few sleepless nights and sore eyes from crying to figure out where the positive is in this situation, where the life lesson was coming into play, and how it would make us stronger as a family and as individuals.
The conclusion is this….
Life is what you strive for, not where you are at right now – it is in front of you, not behind. You need to look where you are going and not where you have been.
If what you’re carrying is too heavy you must put it down.
Life is how you see it through your eyes, and your eyes can choose to see and focus on your blessings or your hardships.