If this were a well-known hair product commercial, this would be the point at which Jennifer Aniston would give her trademark grin to the camera and tell you the science bit was coming next. You see I glibly say ‘Ooh, Alex starts school in September’ but there is a lot you don’t see – the duck’s legs kicking frantically under the water, the sheer organisation needed to get him started on time and with all the resources and support he needs.
We sorted Alex’s Statement of Educational Needs pretty early on. In the simplest of terms – this lays out what his needs will be in school and how they must be met. Having heard some shocking tales of how they could take months to put in place we figured earlier was better. Alex, it turns out, is pretty black and white – no grey areas for our boy – and the Statement sailed through. I stopped for a moment here, Really? He’s that disabled, no one is going to argue? No, no we’re not. Here it is, signed and on time.
The annual review of his statement coincided with the first of many school entry plan meetings.
When I was pregnant with Emma, and I made Gary come to the NCT meetings, there was one session where the woman leading the group explained how it would be if one of the mothers-to-be were to have a caesarean. There was an agenda quite clearly playing out as she explained that there would be no whale music for us, but up to 15 people surrounding us as they hauled the baby out. (Emma was born C-section in the end, we had Radio 4 on I think). Her aim, as you’ve guessed, was to show how intimidating and impersonal it could be.
Anyway… at this school entry plan meeting there were 12 people including me. The Head and SENCO (Special Educational Needs Co-ordinator) attended from the mainstream inclusion school, the Deputy Head and Alex’s potential class teacher came from what will be his main school. In addition we had: Visual Impairment Teacher, Educational Psychologist, Occupational Therapist, Alex’s Key Worker and SENCO from his nursery plus the woman who helps with his ICT input and the lovely, lovely man who comes and makes sure that hoists/ chairs/ ramps are in place and the appropriate manual handling training has been arranged. He has got a proper job title, I just can’t find it. This was with apologies from 6 others: Health Visitor, Paediatrician, Social Services Occupational Therapist, Social Worker, Physiotherapist and Speech and Language Therapist.
I promise I won’t list these people every time, but it gives you an idea of what my contacts list looks like and what we have to deal with, from many many different sources, when it comes to Alex and all that he needs. (As a by the by, the Labour Party are proposing the introduction of a point of contact co-ordinator for all these services, so that we – as a family – would only have to deal with one person in the whole system and then they, on our behalf, would then deal with everyone else. They get my vote for that alone).
We sit and politely don’t eat the biscuits. The Deputy Head kicks the meeting off – she is great and I’m so glad she’s in our corner. ‘So, we could start with Alex’s strengths. What does he like? What is he good at? Mum…?’
Pause. ‘Could you call me Helen?’
It breaks me, being called Mum. I know I’ve voiced this before. Of course I’m his mother, of course I am, but I am me in my own right too, I am not his shadow. And by not using my first name, you remove my identity. It says: I can’t be bothered to remember your name, it says, you are not in our club. I remember everyone’s name that is related to Alex because it’s important for me to do that – who are you? What do you add? It seems only right and fair for them to accord me the same courtesy.
*climbs off soapbox*
Bless them, they all used my first name after that, and you could tell they found it weird but it made me feel so much better, so much more included in this conversation about my son.
So we sat, and discussed Alex for over an hour and at the other end we came out with a plan. There is a lot to do. Things that sound tiny, but require real thought and attention. For example, Alex will need transporting from one school to the other, how will this happen? You can’t wheel him across in his chair, it’s not meant for the outside world, he’ll need a buggy, he’ll need a chair in each school. What about a height adjustable table so he can also stand up whilst playing?
Manual handling training needs to be given to as many staff as is practicable so Alex is never stuck in one place for too long due to lack of staff with the right training. Visits need to be made to his nursery by both schools to meet and observe Alex in his surroundings. Funding needs to be applied for for chairs, hoists at the swimming pool, ICT equipment specific to Alex’s needs. And this is just before the next meeting in May. These people, they are game, they want to make this happen and at the heart of every conversation is, is this right for Alex?
I worry that this can be seen as a vast over use of resources for one boy but thank God that society has seen fit to allocate money for these children with additional needs. He is not taking from a pot but accessing another, specific to him, and all children who need extra help. We – currently – do not differentiate between those who will be able to add to the system and those that will need more help than most, may never, in fact, add in any financial sense to any system because – and I feel strongly about this, as you’d imagine – there is more than one way to contribute to, and make a better place in, our world. Alex does this every day by being the fourth limb in our family – happy and inquisitive and having the most infectious laugh ever. And he sleeps. When he’s supposed to. This is very important too …
Honestly Mum I don’t know why you’re worrying, I’m getting all the education I need right here…