Sticking plaster heart

It’s the end of a gruelling day.

Just one meeting, but I feel battered and bruised and tired beyond imagining.

I don’t know what advocacy feels like when you are speaking for someone outside your close circle.  I only know what advocacy for my children feels like.  It starts by having to find a way to make every singly person around the table “feel” what life is like for your child.

Part of that, it seems, involves letting those strangers see how his mum feels.  Me.  So I proffer my heart, in all its shining, beating, scarred and shattered glory.  I would not change it; each crack is testament to an act of love; each scar reminds me that I can and will survive; each beat sounds out the rhythm of love and life. Once upon a time, I was terribly embarrassed and uncomfortable when tears ran down my face.  Now I let them run.  In part because those tears allow me to stay standing – a little like the valve on a pressure cooker, they let just enough pain flow out of me to let me continue.  Also, though, because the sadness or pain they hint at is real.  There is nothing fake or dramatic about my tears, and they are one of the few signs that people seem to understand.

I would hate anyone to think that I enjoy the spectacle that I describe.  It is indescribably difficult to bare myself to people who at best are strangers, at worst are bureaucrats who simply do not want to see the reality of the lives they affect.  But in the last several years, it is the only way that I have found to reach these people and give them a small understanding of what life at our end feels like.  And once they have that understanding, I have a new ally against the faceless, nameless system.

Then we get down to the nitty gritty.  As much as they want to make things better, it is my job to keep them on track, to remind them how much we at home, and teachers at school have already done, have already tried.  Though Tom is entitled to 23 hours a week of one to one support, school actually provides 31 hours a week.  Not out of some mindless generosity, but because that is the only way to keep him in school and safe. (He is out of school for the remaining hours of the school week due to various standing appointments.)

In spite of loving people, and being very sociable, Little Man has no friends.  (Apologies, he has one friend out of school, who is four years younger than him.)

Given a scale of 1 – 10 whereby 10 indicated Tom engaged in his learning, happy and progressing,his teacher puts him at a 2.  If we discount maths, he’s at a 1.

On a similar scale for self esteem and friendship he’s pretty much at a zero.

The professionals scrabble around trying to find some positive, wanting to improve the “now” while we wait for the Authority to sift through the various reports and decide from afar whether or not my Little Man’s needs can be met where he is.

But the reality is that the “now” is a holding pattern.  “Now” is only about survival.  Let’s get through till half term, till Christmas.  Let’s try to enjoy the little moments of smiles, try to create some good memories outside school…  And a big part of “now” being manageable is in the hope (and maybe the knowledge) that eventually, that wonderful little boy will finally be going to a school which will be able to meet his needs.

A school which has the facility to deal with his medical issues as a matter of course.

A school where the other children in his class share his pace of learning, and where he will achieve and progress.

A school which will  help prepare him for the “real world”, and help him overcome his disabilities.

A school where he will, hopefully, find peers and then friends.

This is why I advocate, why I make the tough decisions and stand by them.  This is why I bare that broken heart, and listen to those strangers speak  of a little boy they just met this morning who told them he was “friendly with dogs”…. and they speak of being “moved” and “saddened”.  I just let my heart crack a little more, and find some sticking plaster to hold it together again…