On Tuesday I had the pleasure of doing my "Talk" to a group of Health Visitors and School Nurses. For over six years, with Special Matters, I have been involved in a project aimed at 'shaping' their roles in relation to families such as ours, and this meeting was part of a relaunch. I sincerely believe that they have a key role to play and can significantly influence the outcomes of children with special needs. My role was to remind them of what parents and carers experience and what they need to help them on their journey through the parallel universe of disability. It really does feel good to talk to people working on the front line, and to feel that what I am saying will actually be translated into practice and will make a difference.
We had a frantic rush from swimming on Tuesday evening as I had to get Tilly home and be back at the school for Tilly's Parents' Evening. Ellen saved the day, once more, and took control of all of Tilly's needs, including a having her hair curled, whilst I was away.
The news from school was all positive. In spite of Tilly's 67 per cent attendance, she has managed to be a high achiever. Her class teacher said that she can ask no more of Tilly as she works hard, plays hard and never stops smiling. I am immeasurably proud of St Edward's Junior High - they are exemplary in their approach to Tilly's inclusion, and I am immeasurably proud of my little girl.
Wednesday morning was an early start with Tilly's dancing lesson with Miss Jeanette at the school at 0815. It was a lovely lesson with Candice supporting Tilly and being just so beautiful and caring. I am unashamedly, immeasurably proud of Candice.
I was set on the loose in Primarni with the task of buying Tilly a 'piratey' striped t-shirt and wellies. Couldn't find the wellies, but came home with a bag full of goodies for the Brownie holiday. Tilly raved at my purchases and decided that Mum had 'done good'! Quite lucky really as Tilly has become very discerning about what she will and wont wear.
Had a great chat with Annabel from Rackety's, and felt really tempted to take on the job vacancy she has for three hours a day, five days a week. It would be working in a field that inspires me, and I adore Annabel, and the hours could be as flexible as I needed. A chat with Rolf brought me back to earth as taking on any sort of employment would not be fair on the employer at this stage, as I am so very often taken out of the picture. Working for ourselves at the B&B is the ideal for us, as I can opt in and out as required. We are very lucky, there are many carers who are forced to leave careers which must be difficult. Volunteering is often the only way to engage with employment.
Brownies was fever-pitch on Wednesday evening with Brown Owl giving the final instructions before Camp on Friday. Pauline had stayed with Tilly for the session so that I could get on with the packing, and we both marvelled at the wonderful contribution these Leaders make for our children, voluntarily! The paperwork, with added Health and Safety regulations, is huge and the responsibility quite daunting. I take my hat off to them! I'm sure they'll all be mightily relieved when they settle down to recover on Sunday evening.
Today I took Tilly to school and dropped her off to go swimming. I was not required in any way at all, either with transport, dressing, transferring, swimming or anything. The school has pulled it off! Tilly goes swimming with school, without her Mum! The school Special Educational Needs Coordinator, the District Coordinator and the County Swimming Authority have been working on this since July. Tilly had a terrific time in the pool. Time to remove my hat one more time with feeling! They did not give in.