By swan uk member and blogger, helen - asalexgrowsup.wordpress.com
Everyone needs systems and processes.
If only to have some words for your actions to push against.
Just to see what might happen, what could change.
Which brings me neatly to … holiday play schemes … and the intractability of county and district council borders.
I never ever thought I’d write a sentence like that. Bear with me …
When Alex was at his lovely nursery which provided cover all year round from 8am-6pm it was remarkably easy for us to be working parents. When he went to school it, of course, changed markedly. As it did for all other parents who made the move that year. As it did for us when Alex’s older sister made the move as well.
But here’s the difference. When we needed cover for our daughter, we had a few options. We had a brilliant childminder round the corner from our house who would take her when we needed and bring her home three nights a week to look after her, give her a safe environment and keep her fed. During the holidays we stitched cover together through a combination of both sets of amazing grandparents and some holiday clubs. She had and has playdates with friends. She had a great choice of activities available to her: swimming, drama, t-shirt painting, football club (only the once mind, never again …).
Whereas with Alex …
No childminder can have him because they aren’t set up for wheelchair access and anyway the care ratio he would need makes him impossible to accommodate.
His grandparents couldn’t have him – and I know they would have if they could – because he comes with a ridiculous amount of equipment and … well, they are older. Less able. And Alex is more than a handful.
Holiday clubs couldn’t take him because (in no particular order and sometimes we could tick more than one of these options): someone would need to stay with him, there weren’t any toileting facilities, there were steps to navigate, there wasn’t a lift … and, lastly, it was completely impracticable for a child with Alex’s needs.
His friends cannot come and play because everyone’s needs are so different. And no one has a house as big as the school hall it would need to accommodate them.
So he is isolated.
We found one play scheme. It was 20 minutes away at another special needs school. The scheme was consistently over subscribed but they always made sure Alex got some time there. They just … got him. Messy play, painting, water play, swimming, sensory rooms, soft play … all the pictures they sent home showed Alex just having a blast.
With other children.
Not with his parents (again).
Socialisation is so important for all children but especially so for children with additional needs, just because it’s so hard for them to get any. It takes so much more effort.
So this scheme was a godsend in that it fulfilled all the above and meant we were able to continue working. It can be a bit of a taboo subject when it comes to children sometimes, especially those with additional needs, but we both want to work and it is so important for us both. Not only because we need to put food on the table but also … self worth … a sense of who we are … a different purpose.
But then, as I submitted my form for the Autumn half term, the woman running it asked me to confirm where we lived. As it turned out that, through a small administrative error, Alex should never have been allowed to go to this scheme in the first place. Whilst the scheme was in the same county as us, the county – which takes over two hours to drive from one end to the other – has been divided into (still with me?) five district councils and two unitary authorities and … those wiggly lines made Alex ineligible.
I’d understand it if, right from the off, they’d said, effectively, ‘No, your name’s not down, you’re not coming in’… but two years in to turn round and say, ‘Oops’…?
Whilst I don’t wish to sound seven, it’s not really fair.
I don’t have any other options. We have previously tried another – brilliant – scheme in the right part of the county but it’s an hour away. So to take him, drop him off, go and get him and bring him home would be a four hour round trip for me. And two for Alex. That’s not sensible. There is another – supposedly brilliant – scheme 20 minutes away in the other direction but … it’s again in the wrong county and again Alex is ineligible.
The woman who I’ve been emailing and whose mind I’ve tried to change suggested an evening meet up session which is an hour away. And in the evening, when Alex is in bed. Because he is only six.
Which leaves Alex stuck at home with the same adult caring team and us unsure how we’re going to get through the holidays.
All we’re asking for is – that word again – a more ‘holistic’ approach. ‘See the boy, not the county borders’ … isn’t going to win any advertising prizes but that is, essentially, it.