You may be wondering what a man, old enough to father two children, is doing still taking exams? Sometimes I wonder myself, but quickly I remember how lazy I was as a teenager and young adult and how it is important to better yourself (or your wife who is clearly more qualified than I!). The past week has been pretty frantic with appointments everywhere and the build up to Camille’s next stage in life taking hold.
For a number of weeks now, Hayley has been in conversation with Camille’s pre-school about having her SEN (Special Education Needs) assessed. We are still in the early stages are radiotherapy but it is clear that Camille, although trying really hard, is not your average four year-old about to start school. The ladies at the pre-school have been great, very supportive and collecting as much information about Camille as they possibly can. They’ve worked with the Head Mistress of the school next door that Camille will be attending in September. After this process of investigation, all of the data was packaged up and sent off to the County Council with us waiting expectantly for a full assessment of what she can and can’t do and what support she’ll need for the remainder of this year and into next.
When the letter dropped into the letterbox of the preschool we were surprised to hear that the County Council were only going to support(?!) Camille’s additional education needs with a measily £10 a week contribution; this is without seeing her or indulging Hayley, I or the schools in a conversation. £10 a week may be able to buy Camille some heavy ended pencils (good for her grip function), it would be able to buy other bits and pieces to aid her rehabilitation, but what about the fundamentals, who is going to look after her?
Hayley was typing an e-mail to the Head Mistress of Camille’s school from September just the other night and copied me in. Reading that e-mail filled me with more fear than had engulfed me in a very long time. With no support, Camille would be left to tackle the playground alone; tens of boisterous five and six year olds running and fighting with no idea of self control or other people. Camille in this scenario would be left, left in the middle of the playground, spinning around trying to catch a word with someone, anyone that would want to play with her. It breaks my heart to think about it. You may think that I am over exaggerating, but we have a Lucia, who loves her sister dearly, but get a group of other children around her and she follows the blueprint of one of these children, forgetting that her sister is somewhere in the crowd.
Camille’s unsteadiness will also translate to the classroom; she will need help around a busy classroom, she isn’t able to go to the toilet by herself without assistance; what will £10 a week get to help her with that? She doesn’t need nappies. So where do we go? We have been lucky enough to get hold of a copy of the government documentation on SEN, clearly stating that the County Council should work with parents, schools and healthcare professionals to come up with their decisions. We will not give up on this one; Camille’s future will not be compromised by budgetary constraints or poor duty of care.
Our fears were made slightly worse when Hayley took Camille for her Opthamology examination at Addenbrooke’s. The eye doctor was clear in her views that over time Camille’s sight will deteriorate due to the high level of radiation she received around the optic chiasm. We already suspect that her hearing is impaired. A conversation with Amos confirmed that this would be likely as the effects on Camille’s functions were become apparent over the course of the next eighteen months. Camille had a truck load of radiation to save her life over the long term, but even with Proton Therapy, we cannot save her from disabilities. So what will the £10 a week buy her then? Books with larger fonts? Camille needs rehabilitation regardless of these disabilities; she can be brilliant in her niche like we all can be in our own niches. She just needs the help to find that niche and to master it.
It’s no fluke that the main purpose of the charity is to help with this rehabilitation. We’ve seen what they offer in the US and that is exactly what is needed here in the UK as standard. Camille’s Appeal will make a difference to children like Camille, but how long it takes is debateable.
We were pleased to welcome some new individuals to the committee last night at our first meeting since our return from Jacksonville. The two Sarahs (sorry to group) and Millie are already making a difference. We’re now in the process of recruiting more people across East Anglia who can help continue the amazing growth of the charity. These include fundraisers and also the important yet not so time consuming roles of Trustees. If you know anyone, please let us know.