• Supporting your support

    It suddenly dawned on me last week whilst I was on the phone to our support worker how much we have a responsibility as parents to support the people we rely on for support.

    Spencer started his transition to a new secondary school last week and this comes in the form of his support worker picking him up from his primary school and taking him to his secondary school for the afternoon, once a week. This works out to 10 afternoon sessions and will both prepare Spencer for the move up and the School for having Spencer there.

    Months of preparation had gone into getting Spencer to this secondary school and to say we were all filled with anticipation feels like an understatement of mammoth proportions.

    The school were amazing, all staff had been briefed about Spencer’s pending arrival and the class he was to join had also been informed.

    As Spencer and his support worker approached the reception area of school they were greeted by the reception staff. Spencer’s tic’s promptly called her a “Fat Bitch” and his support worker had not anticipated her own feelings of being responsible for Spencer during these 2 hour sessions. She was caught off guard and explained to me how her eyes nearly popped out of her head. She had “the moment”. I’m sure if you are reading this as a parent of a child with Coprolalia you know full well what “the moment” feels like.

    In a moment you have a thousand thoughts, feelings and emotions flood your body. Your immediate feeling is protection. You must protect the child that has Tourette syndrome from the negative re-action that could potentially follow the tic outburst. For most having this moment for the first few times you have a feeling of rejection. This broken down in to simpler terms means you are very aware the other person will potentially make a huge mistaken judgement about you and the child you are responsible for.

    As the mum I am way past these initial feelings and have found myself in a place where other people’s judgements of my children, of my family and of me have absolutely no effect on me. They are purely someone else’s thoughts and they have no place in our lives. No one person’s opinion is correct they are all just opinions and not based on fact.

    This being said when someone else’s opinions turn into actions I do have to step up but thankfully threats do not happen to often.

    All this being said our normal is not everyone else’s normal and I had failed to support the lady that I had come to see as our support. After the initial school visit we spoke over the phone and I apologised for not thinking beforehand, I could have passed on some useful tools and preparation.

     

One Responseso far.

  1. Suraj says:

    Hi Marc,I am a 25 year old French girl and I just wanted to let you know first, that what you’re doing is wodunrfel and i do hope it helps people understanding Tourette’s syndrome and be more tolerant toward it, and become more tolerant in general. Life is so complicated that one cannot judge it just by looking to the outward appearance of a person, and thus reduce it to that. Secondly, i wanted to make an adjustment to your spanish phrase, if i may. I would say: Hola, me llamo Marc y tengo el sedndrome de Tourette, lo que provoca movimientos y sonidos vocales involuntarios (que incluyen palabras y frases inapropiadas). Gracias por su comprensif3n!!! Hope to see more videos of you posted in youtube as i do not leave in the US and therefore i cannot attend one of your speeches. Sorry for my english, it is not as good as my spanish unfortunately! Take good care of you.