Undiagnosed Childrens’ Day Instagram Challenge

Day 23 “A Challenge”

Right so I’m a bit behind!  Anyway last night I was getting ready for my twice weekly 5K run.  I’m not a “natural athletic type” I wish I was, I’m more your walking, horse riding, being outdoors type…. And then your lying on the sofa with a beer and a box set type!  But, although I only sort of enjoy it… at a push,  feel better after I’ve run, so I’ve decided it’s just what I do to look after myself feel less irritable and sleep better.

(I’ve really enjoyed being part of ParkRun every Saturday morning)

Undiagnosed Childrens’ Day Instagram Challenge

Day 22 Family

We don’t have many photos of us altogether, something I need to work on I think!  This was taken nearly 8 years ago in Spain.  It was our first “go” at taking Jacob on a plane, wheelchair and all and although it wasn’t without it’s challenges I felt like we’d really achieved something.

 

Undiagnosed Childrens’ Day Instagram Challenge

Day 15 (late!) “my Hero”

I’ve swapped things about a bit, and I’m a day late on account of the bank holiday.  Here’s Jacob and his Daddy who’s funnier and altogether more entertaining than me.  Jacob’s hero, who manages to keep him calm and step in when I can’t stay calm either!

Undiagnosed Childrens’ Day Instagram Challenge

Day 14 “Medication”

Medication is a difficult one for Jacob.  It’s hard to diagnose his symptoms because he learning disability is so profound so obviously that makes treating him a tricky business.  He doesn’t react in the expected way to drugs either.  Respiridone is quite a “sledge hammery” sort of med, but it works well for him.  We tried a couple of other most subtle medications but they made him feel worse…..And when I say feel worse, well we don’t actually know how they made him feel cos he can’t tell us. But his behavior was worse and he obviously wasn’t happy! So yeh, bit of a try it and see job really!

 

Undiagnosed Childrens’ Day Instagram Challenge

Day 9 “My favorite Pajamas”

Jacob needs fairly warm PJs all year round as he often finds his way out from under his duvet.  He doesn’t have the understanding to cover himself over , or the skills required to do so.  He’s not really bothered about his soft toys either.  Apart from his Leapfrog Scout, his Gruffalo and this stripey bear that Charlotte gave him.  He doesn’t cuddle them, but he spends a lot of time and concentration bending the arms backwards and forward, it’s and important business…. And chewing them, he loves to chew!

Undiagnosed Childrens’ Day Instagram Challenge

Day 7  “A Favorite thing”

this is Jacob today playing with his very favorite toy, his fish bowl.  He first discovered it 12 years ago when his portage worker brought it round to ours in a bag of magic toys I thought at the time might help him “catch up”.  (rolls eyes at my own naivety!)  Anyway, right from the start he was fascinated by this toy and loved to just put his hand in and out.  He’s always had this thing about depth, exploring it and trying to get his head around it.  Obviously Fisher Price had long since stopped making them so we found one on Ebay. It’s gentle crashing wave sound and inoffensive music and lights have been part of our everyday lives for over a decade.   Eventually this one gave up, worn out by the constant attention, and we hunted for another.  We found it…Eventually…in France…broken! But once here, a work colleague managed to mend it and here it is.

Transition (part 1)

There’s been talk of planning for Jacob’s “transition to adulthood”.  It’s a thing we have to think about from around year 9, what sort of life we would like for him when he “transitions”.  Now he’s 13 he’s known to the “transition” worker.  She wrote a paragraph for his EHCP review.  She’s never met him or us but we’re on her radar. You might be thinking that my use of “” means I’m not that happy with the phrase “Transition”, well you might be right.  It’s an irritating little word and until this evening I couldn’t quite put my finger on why. Is it actually a real word? I don’t hear any parent in a mainstream setting discus transitions when their child moves on to 6th form or University. It sounds like it’s a noun being used as a verb.  Remember the Olympic Games ? How those that won medals were said to have “medaled”?  Well, no a medal is a thing and winning one is a doing thing! Medaling is not a thing and I’m not convinced transitioning is a thing either. But I’ve looked it up and it is a real word and our son will be doing it in during the next few years so that’s not it…. I can’t let that be the reason it annoys me.

Charlotte didn’t “transition” to adulthood she just grew up and it seems to me giving this natural, normal process another name is just hammering it home that Jacob won’t, in many respects be growing up. Yeah, thanks.  I know it’s probably unfair of me after all there’s no normal process for Jacob and professionals need to call it something… but … It still annoys me!

Perhaps it’s the feeling that the word has less emphasis on the child and more on other agendas?  I’ve spoken to a few parents whose children have “transitioned” and consistently I’ve learned that although there’s lots of talk about planning for post 18 (or if they stay in education, post 25) funds and a place are only secured 6 months (or less) before the child’s 18th birthday.  So in this climate of no money, “Don’t get your hopes up!”,  I think I’m going with the headline on Mencap’s  Transition page of their website

“Mencap Tranition to adult services. What’s next. See what options there are and (and here’s the important bit) how services for your child will change”

That’s what it’s all about.  It’s preparing parents for the fact that at some level their child will become an adult in the eyes of society.  It’s less about them becoming an adult and more about standing on the edge of the childrens’ services cliff …..and plummeting over the edge into adult services. Can’t wait!