It’s Father’s Day on Sunday, so this week the Firefly blog is celebrating all the dads out there loving, caring for and having fun with their kids who have special needs.
We’re kicking things off with this fascinating and detailed diary, taking you through a day in the life of an English family living with special needs.
Steve Palmer’s youngest son Stan has Down’s Syndrome. Steve blogs about his family’s experiences and here he takes us through one of their busy weekdays:
“7am: The alarm goes off. I prepare Stan's breakfast. Every morning the same routine, timed to perfection so that Stan doesn't miss the bus. Stan's been at special school since September and it's been great for him. But it has to be right for the person. Sometimes, a mainstream education is appropriate. Having seen Stan in both settings, we're not evangelists for either option. But we do believe in all schools giving the best chances to their disabled children. Stan dresses himself, which he’s started to do recently. He now hates it if we interfere. Result.
8.10am: The bus leaves and I go straight onto the computer. I'm working from home today because lunchtime will be taken up with Stan's school annual review. Stan's brother's asleep. Half way through his GCSEs, he's realised that the subject he's completed doesn't now require his presence at a lesson, so he's taking advantage before studying again.
10.00am: An email from a member of the Down's parent support group I chair. Ironically, given what I said above about schools, it's a parent who is considering moving her child from mainstream to special school. I quickly organise for someone from the group for her to talk to.
1.25pm: The review goes really well. At times Stan’s behaviour can be challenging, but recently there have been many more “Stan’s had a good day” entries in the home/school book. We talk with the teacher and coordinator about his new hearing aids and how they’re helping his understanding. Then Stan joins for the last ten minutes. He says that his favourite activity is swimming, his favourite subject is maths and he names his favourite teacher, then excitedly says goodbye to his Mum and Dad and rushes back to his class. It’s the sort of thing we didn’t believe we’d ever see on the day he was born.
2.45pm: Back home to work. The bus gets back at 4pm, so Stan’s brother is working around GCSE revision to help out later. Good lad. Financial rewards will be his.
4pm: Stan arrives back and is upset because we're not his usual Wednesday carer, Tom. He’s a creature of habit, our Stan. But it’s healthy for him to have that routine interrupted occasionally, or he’ll never be flexible. The first thing he does is turn off the work computer so my plans to work are scuppered for a few minutes.
7pm: An impromptu World Cup game in the garden. Stan’s bro (Brazil) takes on me and Stan (England). Brazil are in no mood to account for disability issues and we’re heavily thrashed. Mainly because Stan picks the ball up. Penalty!
8pm: The bedtime routine starts. Shower / cheese and grapes and smoothie / to bed. It takes a while to get him off but I reckon he’s tired tonight…
11pm: Well, OK, it can take a flipping eternity. Tonight, Stan's brother helped out and finally got him to sleep. Stan takes up much of our time so we do like 'us time' after he goes to bed. Oh, and tonight, Stan’s bro and I have a special treat - ‘England’s 39 worst soccer gaffes’ on Dave TV. Although my wife's not keen on this one...
2am: Stan comes crashing into our room and it’s my turn to try and get him back to sleep. And soon it’ll be time to do it all again tomorrow. Like an England penalty shoot-out, there's never a dull moment.”
Do you 'baby wear' your disabled child?