… are two different things.
There is an official inquiry into my daughter’s case. The decision will be taken in the next two weeks. In the meantime, I learned some other, very uncomfortable, things about funding issues that could affect a lot more children than May, but until my daughter’s case is over, I’m keeping mum.
Does that make me a coward or a good mother? A couple of weeks will pass and then I will return to fight another day. Because, if anything is a sure thing in this world, it is that I will have to fight.
I don’t like to fight. I don’t find it satisfying on any level. What I want is for people to do their job the right way, the first time, without me having to ask twice (or three or four times). But, they don’t, so there we go.
Here’s some other things I’m waiting for this week:
1. A referral by the Boss to the Developmental Vision Clinic at Great Ormond Street Hospital. A lead that came from the reader who recommended Cortical Visual Impairment. From this, I emailed the author Professor Roman, who gave me the name of a professor in Scotland, who told me about the clinic. It only took me a year! I still felt pretty triumphant.
2. A response from Tessa Jowell, MP to my letter about the restrictions placed on families when they seek a nursery for their disabled child. I wrote her three weeks ago and emailed the letter again over the weekend. But, I’m in Wales, visiting my husband’s family, so maybe there is a letter waiting at home for me now?
3. A response from Ofsted. I made a formal complaint a month ago against the nursery that refused to prioritize May. They have no record of the original letter. I had to email them a second one yesterday.
I spend less time fighting the system, and more time fighting bad filing systems.
Finally, to cheer us all up, here is a photo of my daughter playing. Cortical Visual Impairment advises parents to stimulate their child’s vision with what they can see, as they will naturally build on that and grow to see new things. This is in total contrast to other therapies, like physio, that challenge her to do what she can not.
May can see reflective shiny things, so I hung tiny disco balls from the mobile above her bed and, now, lay her down on these wonderful, silver sheets that make her squirm with delight.
Also, a photo of May eating. She is holding a spoon. It’s part of her therapy. She hasn’t graduated to using the spoon yet, but as you can see, she doesn’t seem to care.