So, fighting for L is part of me and I’m getting better at it. What has totally thrown me in the last few months is that no sooner did I find help and a way forward, than the other simple stuff decided to misbehave.
We moved to Finchley over 3 years ago, pinpointing schools, buying a house in walking distance from them, and confidently refining our choices to cover whoever Louis will be when the time comes.
A sunny May day was the last known sighting of my inner composure, when we received a letter to say that J had not been offered a place at any local school for September. Not a place at a bad school, not a place at a good faraway school, but a place nowhere.
All around us as it is so easily and punishingly compelling to note, friends and neighbours with easy simple lives and easy simple children, got into the schools and got those places while we entered a vacuum.
We fought, we emailed, we called, I sobbed and we prepared with reluctance our appeal while meanwhile we stamped so loud and so high that they nervously found us a place in a “local” school. A school with no tube station to allow us full time working parents to do drop off at. A school that’s trying to turn itself round, and will probably do so quite soon, but that I'm not yet sure I trust will know what to do with my L.
We physically don’t know how to get there or work it into our (10 specialists covering our little one’s) lives. We have lost our support network of friends, all of whom are going to the schools we wanted. We have a child with so rare a disorder that he’s the only one on Great Ormond Street’s books like him and yet, so we were told today and have been from the start of the process…cannot be considered under exceptional circumstances.
Because apparently we’re not exceptional.
Apparently my boys are not special.
Apparently having a sibling with a rare disorder doesn’t mark that sibling out.
That sharing a room with that brother and snapping his head round to evaluate the cough just as I do on a chesty day, and knowing whether we need to get the meds, is just the same behaviour as any other four year old boy.
We don’t stand a cat’s chance in hell of proving that a reasonable admissions board should have taken this all into account. The 23 pages of information, documentation, L’s catalogue of specialists, the impact of this life on J. The chunks that each page took out of me as I dutifully put down on paper what we do every day as full time working parents and then tried not to be overwhelmed by how big it all is.
To sit for two hours, and then enter a room, and no sooner had we sat down, be told in no uncertain terms that we couldn’t win, they were sorry and all, but don’t bother. And yet there we were, bothering, because it was our legal right to do so.
Four hours on and I still feel in the little tunnel I entered to stop the panic attack and being overwhelmed by tears. I can’t remember a word I said, I can’t remember why we started it, and we have to do the same thing all over again for the next school next week.
So I want to know, even though of course we are blessed and things could be so much worse, when I might get to come off red alert for just a short period to re-sole my fighting shoes.
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