Start with the positives. The best thing that's happened on this early part of the road is the response from J's school. They immediately put in a meeting for me and D to meet the fabulous headmaster and the inclusion teacher to discuss my questions and hopefully give us the benefit of their great experience.
Next I sent a big email to my keyworker putting all my arguments and thoughts about wanting to move along the Statementing road. She took a short while to send a considerate and supportive response thinking the best way was to arrange a Team Around The Child meeting in order to get a Family Service Plan which is broader than an IEP and covers the medical side of things I'm concerned about. She asked some questions and was kind and engaged with what I was suggesting.
When I sent my reply to her I was feeling very frustrated about still not having had a kidney referral, had just found out that his right grommet has fallen out of his ear after the op and that the insurance were threatening not to pay for what they had previously agreed, and still not had a date for the continuation of my meeting with the community paediatrician.
So I kind of ranted...quietly...not at her, but in her direction. I must have sounded like a lunatic, but I expressed my need to have some control about who sits round this table discussing my child and our family.
That phrase "Team Around the Child" got me emotional then and does so now, because the whole point is I don't have a team. I don't have an organisation like autistic and downs families would, to mentor me. I don't even have a local 18p- mum to hold my hand, or give me a ruler against which to measure L's chances.
I do have a GP surgery that administratively works, but a GP that doesn't really know us.
I am being weaned off our respiratory specialist at Great Ormond Street from acting as paediatrician.
I have a lovely regular physio but get pot luck on the day of the other 9 or 10 areas we monitor.
I have a great nursery and all the staff there.
And I have my nice keyworker although that's all a bit unusual too because of her job and him and anyway..
I know that I will find it almost impossible to have anyone around my table on my "team" who isn't singing from the same song sheet.
And I can count safely on one hand the medical professionals who have got it right in the last 4 years (in fact I'll list them - CW the respiratory man, my friend's cousin CL who was amazingly helpful in one phonecall with her advice and care, J the physio, SH and MW the ear lot, AM the neurologist and the nameless paediatric registrar at A&E last December).
It's a really simple tune on my song sheet. First it requires the ability to look at my magic smiling unfazed-by- hospitals boy and say
"wow, he's doing really well"
but here's the tricky part
"despite that big list of things that are medically concerning, and the fact that THERE'S A BIG CHUNK OF CHROMOSOME MISSING IN EVERY CELL IN HIS BODY!!!!"
I almost kissed the A&E registrar last year who decided to keep L in for a night to observe (thank goodness, as even medicated every 2 hours he was still extremely poorly) because, and I quote "I just don't trust someone who hasn't got their full Genome. Things that shouldn't be there are, things that should be often aren't, and you just can't take any chances".
So, how can I fill a table with people like that?
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