Wednesday, 31 March 2010

Stern and Necessary Advice - J to S 1.2

My very wise and kind 18p- mummy friend K (who lives in the UK and who I really have to meet someday!) has just given me a timely ticking off about not waiting around for people to turn out to either be helpful or not. 

She says I need to write to the CEO of the LEA (so many abbreviations in this section of my life!) and request an assessment.  So while the keyworker assembles the as-yet-to-be-appointment team, and I wait for my school meeting, I need to write my letter and really get going on it all.

I feel a bit sick but she's right.  I mean you're right.  So thank you!

One day I'll post about all the fears I have about how it feels to even ask for this process to begin.  How I fear I'm really sometimes as much in denial about my little man as the other people I fight so vehemently.  How the fact that he is doing so well and being so typical feeds a dangerous part of me.  The little tiny piece of me that is still hoping someone will turn around and say "sorry, we were wrong, he's actually fine".

Another day...another post.

Tuesday, 30 March 2010

Journey to Statement 1.1

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?

Sunday, 21 March 2010

A Journey Into the Land of Statements -

This is what my blog was really for, charting as a parent of a special kid, the kind of things that when you're in them, you don't want to talk about because they're hard and you don't want to dwell on the negative.  And when you're out of them you want to forget because they were hard, exhausting and you don't want to dwell on the negative.
However I think it's really important that this stuff is here to be read, to advise and support other people going through it, and to help me to see how much we achieve when it all feels too difficult, as it inevitably will be in what I think will be a long road to an as yet uncertain result.
So, my little boy with his genetic disorder.  My little boy who does so well but who may have that held against him.  My ability and indeed determination to look ahead to when he starts school in September 2011 and whether/how/if we can or should get a statement of special needs.
So begins the journey.
Come along for the ride, I may need some cheerleaders

Wednesday, 17 March 2010

when to stop talking

I went to an industry "do" last night for the first time in years. 
It was kind of fun to get dressed up and be glam Sara and it was actually wonderful to see old friends from places that I used to work. 

(Just to meandre for a second, I've bumped into people recently who I haven't seen for a while all of whom have been telling me with great shock and wonder how much weight I've lost.  I got lots more comments like that last night too.  As an exercise challenged person who hates dieting or weighing herself, or indeed looking in the mirror very much, I suppose I have to take their word for it.  However, rather than take the compliment, I'm thinking that clearly I used to be a huge fat knacker, or that people just have an image in their heads of me as a short fat person.  I add the short because people are often surprised at my height and one super lovely friend last week was quite shocked at how tall (or not short) I was after a gap of a year or so since we met.)

Anyway, at said "do", the very last conversation I had was with a lovely producer who'd clearly had a very bad day.  He proceeded to rant quite animatedly at me using many unbloggable words to describe the TV head honchos who'd just turned down his amazing project.  Feeling bad that he was letting these people make him so angry, I in turn spouted positive pointless platitudes to try and disperse the bile, but only really served to annoy him.  I then did something I don't usually do, which was to cite my little magic man in my attempt to give him some perspective on the general bullshit of TV and how it's really not worth it. 

It didn't work, in fact as we both laughed, trapped in this crazy funny and intense exchange, he ended by saying he wanted to dig a hole and put me in it. 
I've never had that said to me before and although I should have been offended, I actually found it quite funny.
So on my way to work I was thinking about writing this post and deciding that I really need to learn when to stop talking, (like I should have to the poor taxi driver on the way home who practically heard my life story from Park Lane to Finchley).

However I've just had call from the nice producer, who'd felt so bad about his rant on waking this morning, that he found my mobile number so he could apologise for being so very grumpy and taking a joke too far. 

So maybe there is room for a cock-eyed optimist in a room full of TV cocks.
But I do need to learn to shush a bit too.
And really, I must dig out some photos to see if they're right and I was as fat as they all remember

Tuesday, 16 March 2010

Deceptively simple means often not simple at all

I had really been enjoying the apparent simplicity of L's latest operation. 

The replacement grommets and full removal of remaining adenoids went just as it would for a typical child, which meant I could relax and let go of my anxiety about things being as complicated as first time round.
So yesterday we went to see our wonderful surgeon for the follow up (with tingling bells about L saying the right ear was scratchy) only to find that the bleeding from said right ear the day after his op, that I was concerned about but took as normal, might well have been the grommet deciding to evacuate.
Dr W couldn't see it due to dried blood and was a little worried, so we now go into another week of drops, another look next Monday, which means another few hours of planning logistics and how to get him there/take him home/do my job, and if the grommet has gone, thoughts about another op.
I try to be all positive and it isn't a big deal in the grand scheme of things, but it would be really nice to have something go super smoothly all the way through.

I'll write down all the things that are helping me to smile this week just to stop me getting all moody:

Matrimonial harmony resumed and D's excitement about our upcoming weekend away is infectious.
Not yet feeling sick about leaving my babies behind for said weekend, helped by their wonderful Aunt C looking forward to having them for the first time.
Three days and counting of blue skies and frosty sunshine makes me feel like we're on the borders of Spring.
Memories of a wonderful family-filled mother's day where my both kids but especially big boy was so kind and sweet my heart popped a little

Finally, something lightened in my head so that I'm able to smile and laugh and move on from the dark thoughts when they threaten.

Friday, 12 March 2010

more observations on my strange

For the last two years I've been walking to work from Tottenham Court Road station.  The final leg of the journey takes me down a little road where there's a Starbucks on the corner, and at what I now realise is the back door of that Starbucks they have a very rigorous cleaning regime that coincides with my walking past at around 845am.
Every day I walk along the pavement of Hollen Street and step into the road to avoid the very pungent bleach and water mix that collects outside the gate of that back entrance, and slowly dribbles its way to collect on the pavement outside.
Every day I sidestep that dettolly-smelling mix, and only this week have I started to wonder why I won't walk through it.
And I think I've found this reason,.
Call it my youth group background, or just my general education as a girl aware of her heritage, but I'm just not comfortable walking through disinfectant.

I have often thought over the years about the "what ifs". 
What if my great grandfather Harris had not come over from Eastern Galicia and found his way to Liverpool and then Manchester.  Or what if my great great grandfather on my father's side had not found his way to London.  What if I had been born then rather than now? 
I might not have had any choice but to walk through that disinfectant and through to my destiny.
So each morning in sleepy Soho I do have a choice
And without me being aware of it, I've been exercising that choice everyday.
Because I can

Friday, 5 March 2010

down low

Still a bit lame at all this blogging stuff.  I don't do it often enough, not that I have any followers so it's not really like I'm disappointing anyone.  Still, I've decided to do it so I should try to stick at it.

I could be kind to myself and say it's because I have a full time job, do all the home stuff, have two kids and have at least one extra curricular appointment for the little one in between all the other stuff like trying to see friends, do exercise, relax, see husband, stare into space just a little....

I need some idea about posting etiquette.  Or maybe I need a crystal ball to know where all of these words and thoughts and feelings will end up and how and/or if and/or when they may come back to bite me on the arse.

Like if I posted about how uneven the sharing of things are in my house these last few weeks that makes me feel so frustrated and used that I could actually burst.

Like if I posted about how I am struggling daily (sometimes hourly and minutely) to keep optimism and positive attitude towards my career.

Like if I splurted all the stuff that makes me frown in my down time.

Tonight I feel low.  We had a little revisit to L's adenoids and grommets this week and I was very nervous about it, having had such troubles first time round back in November 2008. It went really smoothly, just like it would with a typical boy, and he's enjoying his quarantine just hanging out with his nanny and me a bit and having the toys to himself.  I've been able to take big boy to school three times this week and it's been almost too gorgeous a start to my day.  We've even had a paediatric assessment with a big pass from the nice doctor and a glimmer of hope that I might get closer to having someone across all the unanswered medical stuff. 

But ask me when I last had a non-tense conversation with D, I couldn't tell you.  Ask me when he last pulled his head out of his own stress to look around and think "hmm, what can I do for anyone else round here right now?" and I couldn't tell you. 
Ask me why he's down there typing, and I'm up here and never the twain is meeting. 
And I couldn't be bothered to tell you.

Sometimes, rightly or wrongly, it all just feels too hard.