blogging

January 8, 2017

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!

 

 

 

April 29, 2016

Undiagnosed Children’s Day

 

Boots and Splints
Achievements
Wrestling
Family events
Bouncing
Fave toys
Good holding on!
SPD
out and about
donut
loud
sister
meds

I’ve been thinking for a couple of days how to write something for tomorrow, Undiagnosed Childrens’ Day, an awareness day but just as important for parents like us a celebration of our fantastically challenging, unique, complicated kids.

I want to get across what makes it different than having a child with a known / diagnosed disability.  No more or less challenging, just different.  We are often told we may never get a diagnosis for Jacob and not to worry too much because his care will be symptom led.  While I appreciate this…. it does matter.  What he has, what he may be and how we could help him would all be a little clearer.

Emotions can be high so I’m hoping this isn’t an “over share” as one of the Swan UK Bloggers put it!

meds

meds

Jacob takes a variety of medication for conditions we think he has only because of the way he responds to these drugs.  It’s trial and error.  Diagnosing his symptoms is becoming more difficult.  Because he is undiagnosed we don’t know why

 

peanut

SPD

Jacob has severe sensory processing disorder.  He struggles with day to day situations and can easily become over stimulated.  Because he is undiagnosed we don’t know why

 

boots

Boots and Splints

Jacob has mobility problems.  He started to walk at 6 years old, has an unusual rolling gait and cannot get up from the floor without help.  Because he is undiagnosed we don’t know why.

Jacob has all his self care needs met by an adult.  He is washed, dressed, brushed, changed, (Jacob wears pads 24/7) fed and watered.  He needs someone to keep him safe at all times.  He will always need this 24 hour care.  Because he is undiagnosed we don’t know why.

toys

Fave toys

Jacob is nearly 12 years old. These are his favourite toys.  He has severe learning disabilities.  Because he is undiagnosed we don’t know why.

Jacob is never still, or rarely quite.  He finds it hard to relax and has episodes of panting, breath holding (until his lips turn blue) shrieking, twitching and squirming.  Because he is undiagnosed we don’t know why.

 

calm

Achievements

Jacob often gets recognition for his achievements at school. Good calm sitting is a biggy!

Jacob cannot speak, sign or gesture or point.  He is often frustrated as he wants to communicate.  Because he is undiagnosed we don’t know why.

 

model Pic

But Jacob is a lovely little boy with a beautiful soul.

 

baby pic

 

He was a gorgeous baby

 

swing

Good holding on!

 

 

He does learn.  Two years ago he learnt that if he held onto a swing he wouldn’t fall off!  And that this was fun!

jammy

donut

Jacob is almost always happy.

ball

He loves to be out and about.

 

daddy

He likes to be close and to be cuddled.

loud
Wrestling

 

Like most boys Jacob likes rough and tumble and to be loud.

 

out and about
Family events

 

He is fun to be with and with quite a bit of planning we CAN do family events.

 

Jacob loves, and he is loved and well really that’s all there is…… because he is Jacob we know why!

 

 

 

 

 

 

 

 

 

April 5, 2016

Labels

I often hear from the media or professionals that “we shouldn’t label children” and this gets me somewhat frustrated.  I’d argue that that’s exactly what we should do but as a starting point not an all-encompassing description.  I sometimes wonder why people take this view-point at all and when I’m feeling cynical I’d say it was because of their own agendas.   In my experience the “let’s not worry about labelling him” or the “let’s concentrate on what he can do rather than what he can’t” tend to be the sort of attitudes that come from people who don’t understand or want to acknowledge the severity of the disability or its impact on the family.

I’d really love a label for my son.  It would give us a starting point.  Somewhere to go to when considering how to treat him both medically and personally.  He often shows quite distressing behaviours but we don’t know whether that’s part of his ADHD, ASD or SPD.  You treat one and you run the risk of making another worse.

I’m not really sure what’s wrong with a label.  Consider mine;  Wife, mother, daughter, sister (not that descriptive) carer, Support worker, horse lover and keen rider, coffee drinker, sporadic and reluctant runner, Archers follower and you get a bit of an idea about what I’m like and what’s important to me (maybe I should add blogger) And that’s all I’d like for Jacob.  A bit of an idea of what’s going on with him and understand better how he works, and what’s important to him. You wouldn’t think that because I’m a huge fan of “the Walking Dead” that I only watched zombie/ apocalyptic horror box sets, (Actually there aren’t that many good ones anyway!). “Mad Men” is the best thing I have ever seen!  What I’m trying to say is that one part of us is not the whole of us.  We are not defined solely by our work, hobbies, TV viewing, opinions, medical or developmental disorders.  They are just part of what we are.  After all, we are all complicated…. Just some of us are more complicated than others!

February 5, 2016

Swan UK Bloggers on Tour

This Saturday I found myself off to Birmingham for the second time this week. Earlier in the week I was speaking at a joint childrens’ and genetics meeting (blog to follow) and this time I’m off to meet a whole bunch of Swan UK bloggers.

I’ve been looking forward to this but it’s not until I’m in the car I realise that I’m a bit nervous. Out of the 13 ladies attending today I’ve only met two of them in the flesh as it were! But the others I feel I know anyway. Before Swan UK I hadn’t appreciated this world of virtual friendships, hugs, insider jokes and shared experience, both ups and downs.  Anyway I spent the first half an hour or so say “on it’s you!…We’re all real! 2  As the morning starts I wonder if this sort of thing happens often.  Do bloggers on a particular topic ever get the chance to meet and exchange ideas?

All our blogs are different ‘cos all our experiences are different but that’s what makes us the same. Same struggles and achievements but for different reasons.  As I’ve said before “We are all the same because we are all completely different”

Some of us have been blogging for years and have some great sites. My head’s full of ideas; plug ins’ domains, .org or .com?, links to other sites…. The list goes on. I know I really need to get to grips with the terminology and I make loads of notes including a mental one to find an online tutorial.   I came to blogging quite late (and after a little gentle pushing for which I am grateful!)  I had tried it when Jacob was about 3 years old, but I didn’t find it the satisfying experience I do know.  In fact quite the opposite.  It made me angry and ranty and I didn’t produce anything useful or to be proud of.  Fast forward a few more years and I had an idea of what I wanted my blog to be, helpful, informative, eye-opening (to those not in this world ) Above all I had an idea of what I didn’t want it to be; a rant, self-indulgent or something that would make people feel sorry for us.  Anyway (other than my post about social services!) I think I achieve this…most of the time.  It’s true though I do use my blog as a way of looking at an issue and sorting things out, as what ever it’s about I want it to be a positive reflection.  Funny that whilst I was working in a proper professional job before Jacob, (my previous life) there was so much emphasis on reflective practise and now I’m not doing that job anymore I’m actually doing the reflective practice properly! Is that irony? I think it is .

We spend the morning discussing strategies for Undiagnosed Childrens’ Day 2016 (top secret obviously) What are the important issues to our members and what’s our key message? It’s fascinating to get an understanding of how a campaign takes shape.

The afternoon concentrates on Twitter, WordPress and using social media. Something I really need. I use Twitter but for professional “SEN Mummy, Swan parent Rep “stuff, not socially as I use Facebook so it has taken me a while to get to grips with it.  You never know you could soon see me on Instagram, Pinterest and Tumblr!

Shameless plug …. Follow me on Twitter @swanmumjo

By the end of the day my brain is full, lots of ideas for my blog and at least 3 new titles (watch this space) I just need to get it all down before all my ideas fall out of my head to make room for other things! One things for sure I know I’ve just been at something very special and I’m more than a bit proud to be considered part of this group of lovely people.