Wednesday, 8 July 2009

ooh, some good news...

I've been worrying and fretting quietly to myself about whether I can handle this school appeal tomorrow and it's been a genuine concern about what it would do to my sanity.
I now find myself in the unfamiliar situation of feeling happy and calm. That's because I just had a call from admissions telling me that we don't need to come to the appeal, because the school had agreed to take on more children and therefore Jacob has a place. The nice woman on the phone probably hadn't been prepared for the gushing and thanks and general outpouring she got from me.
I want to know how it's possible and what we need to do but also, suspicious me wants to wait for the letter so I know it's not a big joke.
So, this not a post blarting on about how screwed up the appeals process is and how cruel the bureaucrats within it are.
This is a post to say I'm smiling, I don't feel sick and I think I can begin to plan a workable way to look after my kids, work full time and get back to the business of everyday life.

Monday, 6 July 2009

Somewhere In Between

So often I find myself overwhelmed, then I pull it together and slip back into underwhelmed.
I am very excited to know how it feels to be somewhere in between.
Middlewhelmed. Midwhelmed?
sounds a bit rubbish...maybe once I coin a linguistically acceptable phrase for it, I'll be on my way there.
any suggestions welcome.

School Appeals Part One - Friday 3rd June

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.

Where it all began

I started blogging two years ago when my littlest boy L was diagnosed with a rare genetic disorder called 18p deletion. The emotion, stress and pressures of our lives at the time sent that blog account spinning towards the recycling bin soon after.
Today, Friday June 3rd 2009, fresh from the first upsetting and draining school appeal for my J (that I’ve just attended and lost) I am back, wanting and needing to howl at the (virtual) moon.
I’ve lived a lot of life in the past five years with deaths and illnesses and the life-changing news about my little L and his magic DNA. To spend 9 months of pregnancy, ill, scared and knowing something was wrong with my baby only to be treated like a neurotic hormonal woman. To spend a further 9 months rushing that child in and out of hospital laid flat by simple colds, breathing so loud you could hear him in the other room, missing milestones and silently imploring me to keep banging until someone heard. Clarity came with the grey haired wisdom of the paediatrician who listened, checked and finally found what I always knew had been there. To spend the next two years acting counter-intuitively as a loving mother by continually telling people that he wasn’t normal, that he isn’t perfect, and having to self diagnose his now numerous medical, neurological and behavioural disorders.
Two years on and I realise my DNA changed at the beginning of this journey that with tears in my eyes I’ve just read back to myself. But because of the magic and wonder, curls and smiles of my glorious boy, those ripples haven’t started moving out yet. Life is just the same for everyone around us. One family and their reluctant inability to get it. The other that gets it but is too far or busy to be part of the support network. The medical world and the lack of facts that they like to find comfort in. The authorities who hide under paperwork and red tape, hoping you won’t find all that they could be doing for you. There’s no box to put L in, or support group to help shout and bang my drum and having banged and crashed and seen with such clarity for so long alone, I find it almost impossible to ask for help, even when it presents itself.
My battles are just beginning and I am made whole by knowing that this is my job and that I wouldn’t trust anyone else with it. And nor would he. I feel his pain and am surgically attached to him when communication or his high pain threshold means that he can’t recognise if something bad is going on. So two years on and life is no less confusing or lonely, except for the small and globally scattered handful of 18p- parents that I found, was overwhelmingly welcomed by and despite them feeling like the ghost of Christmas future, could not now do without.