Twelve years ago I'd just finished toilet training my 3 year old and was looking forward to him starting nursery school. He had a lovely time there, the staff were fab and he learned lots - could write his name, count, sing songs, do jigsaws. Towards the end of the school year, however, he had a seizure in school and our lives changed forever.
He was diagnosed with Lennox-Gastaut syndrome and immediately lost a bucket load of skills that he once had. Since then we've learned to cope with the condition, with a mantra "Mattew's happy - everything else is our problem"
Year on year we see extra skills go. Such a tough thing to cope with, but Matthew remains happy - probably the happiest teenager I know!
A few weeks back we had an occupational therapist in to go through adaptations to our house to suit Matthew in the future - a wet room, and through the ceiling lift to keep him sleeping upstairs safely. I struggled with these decisions as it was another confirmation of my son's deterioration and the increasing problems we will face in the future. I kinda try to avoid looking into the future as far as possible as it's then that I'm likely to go slightly mad, or want to curl up under a duvet in a darkened room, preferably eating chocolate!
Last week I met up with Matthew's teacher to discuss his targets with her. The school uses a system called "B squared" which has lots of little activities to tick and show progress. Unfortunately it's can't really measure regression, so she had to start again and do a full review of what Matthew is able to do......
Obviously you can't really make out the detail in this, but the bottom bit, highlighted in pink, shows the skills that Matthew could do last year. The top - in green - shows what he is currently capable of. ALL of the stuff that was previously marked as "completed", he can no longer do :(
No I KNOW that Matthew has a regressive condition, but to see it demonstrated so harshly in black and white (and pink and green) was a real kick in the teeth. I was in tears with his teacher (who was SO lovely and supportive) ..... went to a friends, cried and drank coffee ..... had a duvet day in bed. These things are bound to get to us, so I had my pity party, then got up and got on with it!
I was reminded of a poem I'd written years ago, when Matthew was in year 2 at a mainstream school. The rest of his class were doing their first lot of SATS tests, but Matthew was excluded because of his learning difficulties:
Special – With Educational Needs
They set our kids milestones,
Complain when they fail,
Try to fit them to their moulds,
All to no avail.
They call our kids naughty,
When their skills, immature,
Frustrate and confuse them,
Head banging the floor.
Our kids, skilled at fitting,
Can’t fit with their rules,
Their seizures confound them,
Make them out like fools.
Don’t try to assess them,
With those measures we dread.
Please just understand them,
Get inside their head.
Our kids DO make progress,
In inches, not miles,
We don’t measure by SATS scores,
But by cuddles and smiles.
Their seizures have left them,
Fragile, but not thick.
They’ll advance, and they’ll grow,
If you learn how they tick.
So please give our children,
Their own chance to shine.
Put yourself in their shoes,
Or even in mine!
It was tough at the time, but it made me think again of the value of the milestones and tests that our kids face - or rather the lack of value. These performance tests have their place in progressing kids, but completely fail to capture the amazingness of non-typical kiddies. Yes my boy is heading backwards academically. Yes it's tough. But my boy is REMARKABLE!!!! He is happy, content, positive, bouncy, loveable and loved!!
His teacher went on to discuss a certificate he'd been awarded for cheating at games! Imagine getting a certificate for cheating - how weird is that??!! They were playing a curling game aiming towards a target and Matthew would sneak up with a sly grin on his face and surreptitiously nudge his piece towards the centre of the target. That tells more about my boy than any test would:
For "using his initiative" read cheating - that made me chuckle so much. My gorgeous, cheeky, cheating boy!
School then did a FAB birthday card for him, which is what I would like to finish this blog with. Happy birthday my lovely young man. I have no idea what the future holds for us, which is a bit scary, but I know that you will bring me GREAT joy, even through the sadness....
