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 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 13 “What’s in your bag?”

This is Jacobs bag.  We try to be prepared when we take him out so although he’s 13 years old he has a change of clothes, pads, drink, a small toy,  chewy tube, the Rada key (disabled toilets are often locked) and baby wipes.  I think I’ll always keep baby wipes handy. I’ve been know to clean my whole car interior with baby wipes!  Jacob often has ear defenders with him.  He can easily become overwhelmed when he first enters a new environment.  Sometimes ear defenders help…Sometimes they don’t.  The Ipad isn’t for playing games, we’re trying a new communication app out, but it’ll be a long time before Jacob has any chance of using it purposefully so  we need to use it with him whenever we can to show him whats possible.

 

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!

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!

 

 

 

Rare – It’s all about perspective

I’m at a disability exhibition for SWAN UK, chatting to parents and professionals, spreading the word…. According to us! We are a relatively small group

of families that suddenly find they’re in a world the never expected. I think we all consider when we’re expecting a child that we could have one with special needs or a disability. But to then find that you don’t know what’s causing their problems, well you don’t expect that. The reality is that not only are we in this minority, we are a minority within that minority.

Someone says to me “Wow that’s really rare isn’t it?”

Well it is, until it’s you. And then not only is it the norm for you but you discover it’s the norm for lots of families.

I’m not sure what I would consider rare to be now.   Jacob has been tested for a lot of what I would have considered rare conditions. Angelman Syndrome 1 in 12 – 20 000 thousand Smith-Magenis 1 in 15 – 25 000 and they’re all negative. And because of Jacob I know 3 children with Angelman Syndrome so to me it’s not that rare!

I’m sometimes asked if I knew Jacob was going to be the way he was whilst I was pregnant. No is the short answer, in fact we didn’t know for sure until he was 15 months old. I think, but I can’t be sure, that this question actually means would you have terminated the pregnancy if you’d known? Well no I wouldn’t.

Sometimes I’m asked if I had all the prenatal tests, and no again is the answer. But I think people then think that’s why we didn’t know. I explain that we have since had all those tests and more and they’re all negative. So yes, that’s right, there’s no way of knowing you’re having a child like ours. Mums usually look shocked by this, cos that’s right, it could have happened to them, and they wouldn’t have known or had a choice. There’ nothing that singles us out for this role. And the phrase “special kids are given to special parents cos they can cope” is nonsense. We just cope the best we can just like any other parent. Nothing sets us apart in the beginning, we grow into the role from having to. We become copers and special out of necessity.   And actually we don’t’ cope all of the time. To all mainstream parents who say “I don’t know how you do it, I couldn’t cope with all that” it’s amazing what you can do when choice is taken away from you.

I was offered the AFP test at 16 weeks pregnancy. You know the one that gives you a ratio risk of having a child with down’s syndrome or spina bifida ? We really didn’t see the point. I wasn’t going to have amniocentesis because of the small risk of miscarriage. And anyway I was already pregnant and wanted that baby, no matter what. The irony is that I clearly remember talking about it with a colleague who was just back from maternity leave. I didn’t know why screening for just these two conditions was so important and as she said you could have a child much more several effected with something else!

So, here we are with a beautiful child that is effected by some random genetic condition that possibly no one has seen before, with all the usual tests that would have been done prenatally being normal, countless other tests and chromosomal screening all normal and now on a study waiting for an exome sequence to possibly explain his problems.

Rare is just a matter of where you’re looking at it from. If you’re that one in a million then it’s every day for you. One person’s Rare is another ones mainstream!