Saturday, 28 June 2014

The Disability Diaries : What I Didn't Want To Hear

You know that song, 'La La La,' that came out last year?  The one with the video where the little boy sticks his fingers in his ears when he doesn't want to listen to the man that is shouting at him anymore?  Sometimes I want to do that.  Stick my fingers in my ears.  Stick my fingers in my ears and not listen to the voice on the other end of the phone that is telling me they believe my son just had a seizure at school. 
A seizure.  A prolonged absence to be precise.  A form of epileptic activity.
In the graceful words of a dear friend : 'Shit.'
The school had mentioned they wondered if he may have been having some form of absence a few weeks back, but not having heard anymore since then I blissfully blocked it out and told myself they were probably just being over sensitive because he is still relatively new to the school.  And, in my defence, it hasn't been something that I have noticed at home.
But having said that, time at home is for complete chill and wind down space.  J1 is so tired from his school day, when he comes in his wants his tea, a stretch out with TV time, swiftly followed by lights out.
The phone call from the school, telling me this happened whilst he was having his physiotherapy carried out, was followed by a frantic call to J1's father and then straight onto the doctors.  Explaining the situation I felt physically gutted to have to relay that yes, he used to have them, but he hasn't suffered since he was about six. 
Why couldn't they just stay away? 
The doctor noted that she would make an immediate referral to a Paediatrician who would see him and probably refer him for EEG testing.  I remember the last time he had one of those.  He must have been about two.  For eight years we managed to avoid the need for any further intervention.
Since then he has been watched like a hawk.  Any lack of blinking observed and determined as 'an absence' or just a lack of blinking.  He has looked at me a few times, studying him intently and actually said in that sulky, teen (even though he is only 10) way
Hearing that sends floods of joy through me.  My reply is to go and hug him, as tightly as I can, given you also have to hug whatever piece of equipment is keeping him upright at the time.
That is one of the really hard things about the form of J1's disability.  Because he has no trunk control, and I mean none, he always has to have support so it is almost impossible to give him a proper hug.  The equipment is stealing my hugs I always feel.  I try and lay alongside him on the bed and hold him, but he can't reciprocate and it is tough when he can't move to allow you to get your arm right under him.  It is now impossible for me to try and hold him up with just one arm, he has grown too much, too quickly.  I didn't realise how soon easy hug time with my son could be taken away.
Because of this I find myself being a little over zealous with hug opportunities with J2, but he is still so young he doesn't mind.  I wonder what I will do when the day will inevitably arrives where he pulls away.  Cue fingers in ears.  With eyes closed too.
So, after having just one day of feeling upbeat because things seemed to be coming together, this now raises its ugly head.  I once again am waiting at the mercy of the professionals to try and work out what is going on in that beautiful little head of his.  I asked him the other day, whilst he slept so peacefully.  I didn't get an answer.
I just hope they do.


Tuesday, 24 June 2014

The Disability Diaries : Recognising Progress

Quite often I write the 'Disability Diary' posts when I am frustrated or sad about an issue.  Writing about it is my way of settling the mind or venting the anger.  It doesn't solve the problem but it helps clear my mind or form a plan.  Sometimes it feels a little like positioning the pieces of a jigsaw puzzle into place.  After that there is just the fiddly task of getting the pieces to stick together.
A few months back I was feeling particularly overwhelmed by life as a parent of a child with severe disabilities.  We had decided to move to a new area, and it felt like we were starting all over again what with struggling to get the professionals in place that we need for J1 to have all his needs diligently monitored.  Just to get a phone call back, and not necessarily from the correct person, seemed to take four or five calls and messages.  It seemed we had moved but before we could get to the right place for J1, first a huge brick wall needed to be scaled.
A few months on and slowly I feel someone has started throwing us some tools to help climb that wall.  The school review saw a referral for a CND put into motion.  The school OT finally cleared up the confusion about what area we came under and we now have an OT, with an actual name!  With her in place, several of the other issues are now being sorted out.  As I write this post I am waiting for a hoist to be delivered and some Wendy Lett slide sheets for the bed.
Wendy Lett slide sheets are a smoother material cover that should make it easier to move J1 back up the bed.  What with the rolling him from side to back to change his pad and get him dressed, he usually ends up out of position.  I am a 60kg female and my son is 54kg.  To try and pull him back up the bed, against the friction of the bed sheet is no easy task.  I don't expect it to be easy but I am always looking for ways to make it easier.  To know these sheets have been available but never suggested to me before is quite frustrating.  He is 10 years old, and we have been aware of his disabilities for 9 of those, yet I still feel as in the dark as when we started.
Saying that, I also have 9 years of skin thickening experience and now know sometimes stamping the feet is the only way to get anywhere.
On a further note in praise for the OT, following on from a general discussion we had regarding 'personal care' for J1.  When J1 goes to his grandparents for respite he has an adapted bathroom, thus a shower, however, our house is only rented so I have to bed wash him from head to toe every morning and, sometimes, depending how warm the day has been night as well.  We make it fun and it does give J1 quite a good physiotherapy session as each body part gets moved individually whilst being washed and dried.  But, particularly in the summer months and as he gets older, a good 'soak' is quite lacking.
Cue, The Water Genie.  This ingenious item is essentially a blow up paddling pool for the bed.  It then comes with a portable water unit with attached shower head that provides approximately 10 minutes of continuous warm water.  After washing it sucks all the water back out.  Now, I am very excited that we are going to get the opportunity to try one of these, despite a few reservations.  No matter what equipment you get to help, they all have something you haven't thought of.  For example, in this case I am wondering how quickly it will remove the water because for the length of time you are removing the water, J1 will be lying wet and probably getting a little cold whilst waiting for the water to disperse so he can be dried - see what I mean? 
Another example of this is hoisting.  Yes, a hoist is essential and much needed and we could not live without one.  But people say to me 'Well you have a hoist don't you?' when I say it is difficult for me to move J1 around as he gets increasingly bigger.  Like it sprinkles fairy dust over him and magically lifts him through the air and into his seat.  The reality is this; a hoist is a large and heavy piece of equipment before the weight of the person using it is added into the equation and to move it on carpet is pretty damn hard.  Positioning its huge legs so you can get close enough and in exactly the right position takes patience and precision.  Before you even get to that stage you have to get the hoist sling in place.  And that is so much fun. 
The hoist sling needs to go underneath the body and be in exactly the right place otherwise the lift will not be at the correct angle and not lower into the chair in the right position.  To get it underneath the body, J1 must be rolled onto this side (just to set the scene accurately J1 can not assist with this, his weight is, although I hate to use this expression 'a dead weight').  Once on his side you must try and keep him there, whilst laying the hoist sling as flat and accurately as possible over the length of his body (all along the back from top of his head to about his knees).  The aim here is to try and get as much of the sling under the side he is laying on as this makes it slightly easier when you roll him back and you have to try and pull the sling material through so he has equal amounts either side (even being a veteran at this usually requires more than one attempt).  Then all the straps (six in all) can be lined up ready to hook up to the hoist arm.  Easy as hell hey?! 
But as I said, this post isn't to gripe.  I am fully aware in the case of disability, nothing is easy.  All these things are just to try and make life easier.  And I am so relieved that we now seem to be getting somewhere with it all.  Equipment is just one small area in a huge sea of things he needs to make his life as pain free as possible.
J1 should, this very week, be receiving a referral to a specialist spine unit.  This was never an area I wanted to have to venture into but the reality is, we have and we just have to deal with it.  Our job is to ensure he is seen by the best people he possibly can be.
We have managed to get him into a new eye clinic and also referred for a functional assessment (eyes and brain processing).
We persevered and had a very good appointment at wheelchair clinic.  For sometime we have been wanting to see if a specialist chair called a CHUNC would be suitable for J1 and I am pleased to report we are going to have a two week trial with one.
All those pieces of the jigsaw that seemed so jumbled and a mountain to sort through are now lining up and with more patience and methodical work on the part of everyone involved, should start building a better picture for J1. 
And that is the only thing that matters.
This is always going to be an on-going and continuous way of life for us.  So for now, it is a moment to celebrate moving forward, that is as important as complaining when we aren't.

Monday, 23 June 2014

Setting Sail with a Plan

In my last post I lamented about how much I had spent the year looking forward to attending Britmums Live, and for the friendships and social aspect that was whole-heartedly true.  But a small, annoying part of me kept chirping up and saying 'But you don't really belong this year do you?'
In the last 12 months I have probably completed a handful of blog posts, I slipped away from networking, Facebook and Twitter.   I would love to say this is because I have been focusing on writing my novel but that would be, well, a bareface lie. 
Of course I kept taking that little flea in my ear and stamping on it with the force of an elephant stampeding, but it didn't really go away.  When I arrived on the Friday and met with my fabulous fellow blogging friends, the little niggle actually got stronger rather than dissipating like I thought it would.  I looked around and surveyed at how amazingly, bloody well my friends were all doing and progressing with their writing plans.  They all seemed to have taken our success from the agents sessions last year and really run with it.
First drafts of novels had been completed, mentors sought and secured, poetry and flash fiction anthologies developed from scratch, agents approached, writing festivals attended and some were actually involved in the running of the Britmums Live event!  For every one of those achievements by those wonderful people I am truly proud and in awe. 
But it also served to me a stark reminder of what I had not achieved this year.  It seemed as if just when I was starting to get somewhere with my blog and writing, good feedback and a little bit recognition from unexpected sources for example, I stood, frozen like a rabbit in the headlines.  And whereas my friends in the same position took their little bunny tails off to the safe side of the road and saw the opportunity to run wild in the big green field, I decided to stay, stuck frozen and scared in the headlights.
For the first two hours of the event this made me a little sad.  I felt little enthusiasm to be there.  In my mind I was sulking, a bit like my four year old does when something doesn't go his way.  But I was only cross at myself.  I could make excuses.  To be fair I have had a lot on my plate this year.  Oh yes, I could find a perfectly legitimate and plausible reason for why I haven't made any progress with my writing plans.
But the long and short of it is this : Everyone has had a lot on their plate.  The bloggers keynote readings made that very clear and the only reason I have barely put pen to paper so to speak this year is because I haven't been bothered too.  I could have got up early, stayed up late, left the housework, insisted that I have an afternoon at the weekend to work.  These are all things everyone else has done in order to make progress.
All of the authors in the first afternoon session I attended categorically stated that they have hectic family lives.  They have children, husbands and houses to run.  But, in order to write they had to make sacrifices, just like their husbands have to for work.  But whereas, when you are out at work you don't see you have the choice, you just have to do what you have to do, when you are a writer making your own schedule you have to physically choose to make those sacrifices.  Because as I have proven this year, it is so easy to not make them and, quite frankly, get nowhere.
By the end of the two Friday 'Write' sessions I decided to turn my thinking more positive.  The reality was I had put nothing in for the last 12 months and thus had very little to show for it.  But, I was surrounded by the best possible example of people who had put a lot in and had much to show for it.  That is an inspiring thing (the whole Britmums environment is) so I decided by the end of the second session pouting over the last year was a waste of energy, bugger all I could do about it now. 
All I can do is move forward.  To acknowledge the self doubting, cautious side of my nature and then kick it to the curb.  To have more faith in my ability.  To spend some time planning (I am pleased to say I did actually even start to do this at the conference whilst I was enjoying some quite time with [brags] an award winning friend on the sofas outside whilst the warm summer breeze lapped over our exhausted faces). 
I don't know why I hold back, I have always been the same.  I am not getting any younger and this is the thing that I really want to do.  I acknowledge my life is hectic and I have been waiting for this new period in our family life to come around (my youngest will be starting school in September).  A whole new era will be starting.  A whole new routine.  A whole new chance.
So I have from now until the end of August to make a 12 month plan (it will be big and colourful and placed on the wall - like a hawk eye).  At the end of the 12 months (September 2015) I want (will) be in a position to go to the York Writing Festival with confidence and a first draft.  Many things will make up getting that confidence; getting my blog active again and engaging with people and getting involved with the communities; entering writing competitions and submitting feature pieces; asking for feedback; researching my book genre market - writers and agents.
In short getting back out there and not being afraid. 
That can't be so hard?  Right?

Sunday, 22 June 2014

Three Years of Britmums Live - A Journey

In June 2012 I was a virgin.  A Britmums Live! virgin that is, of course.  Actually, in all honesty a complete blogging conference newbie.
Over the two days in that first year I diligently attended every session with regard to blogging, in my long planned, schedule of the events.  I made a book full of notes, visited every sponsor, signed up to almost everything and left with so many goodie bags I could hardly walk to the station.  I made acquaintance with a lot of bloggers, and unbeknown to me at the time, true friendships with two or three others.
I ate and drank too much.  And I allowed my mind to be temporarily pulled away from my duties as a mother, wife and housekeeper.  It was two days just to think about blogging.
I was exhausted mentally but I loved it. 
I swiftly booked for Britmums Live 2013 and looked forward to it wholeheartedly for the entire year.  Over the course of those 365 days my blogging continued but my writing ambition also started to develop, so by the time June 2013 came I was thrilled to see the conference also start to include sessions on writing, publishing, and how to approach an agent.
Another new thing was introduced.  Speed dating with an Agent.  A small time slot whereby you could pitch your idea to that mystical figure : The Literary Agent.  I so desperately wanted to think I could do this, but my book idea was so new in the making I had little confidence.  However, one of my wonderful fellow blogging friends told me to be confident and do it.  With the decision made, next came the hurdle of how, out of 700 delegates were we going to bag ourselves one of those few golden slots. 
Time to be brutal.  We were outside the doors two hours early, for the first hour and a half, we were the only two people there.  I was, still doubting myself and so tightly wound, worrying that a rampage would occur and our wait would have been in vain.  That did sort of happen actually, but my dear friend shoved me to the front and practically wrote my name down for me.
My appointment wasn't until quite late in the day, and I felt physically sick for the duration leading up to it.  I felt even worse when my time came and I got in front of the Agent, who's mind was obviously going at a hundred miles and hour and she looked at me expectantly.
As my brain and mouth decided to epically fail me, I shoved my synopsis across to her and tried to remember how to breath whilst she scanned it.  Ultimately I got amazingly positive feedback and was walking on air in a mixture of sheer relief and astonishment that I had got 'POSITIVE FEEDBACK!'
So, it was worth it.  But on reflection my first day had been largely spoilt because I was so stressed out.  I decided I had to make day two more relaxed.  I realised  I didn't need to go to a session if there wasn't something I really wanted to go to.  So I largely socialised and mingled.  That too was fantastic, I chatted to authors and met Katie Piper.  I got as much out of year two, but in a different way.
My ticket for Britmums Live 2014 was booked on my return home and yet again the event was hugely looked forward to the whole year.  My plan for this year, to be chilled.  I took my time getting to the event, had lunch and a glass of wine whilst perusing the Agenda and then checked into my hotel.  I guess I had the comfort of knowing a lot of people that were going to be at the event and consequently it took a lot of the nerves away. 
When I walked into BRIT 1 for the opening keynote it felt like just yesterday I had been there and really surrounded by old friends.  As we all looked around it was wonderful to be able to nod in acknowledgement to people, to wave frantically mouthing 'speak to you after!' to others.  This time it was so much more about the social aspect.  I did attend the WRITE sessions and thoroughly enjoyed and felt I benefited from them. 
On day one, my friend and I discussed the possibility that we wouldn't attend next year.  Maybe it was time to find more writing focused conferences, that we felt maybe we had learnt what we could from this particular event?
By the end of the BiBs, I realised it isn't all about the learning and attending sessions to help us progress.  The event for me now is a wonderful opportunity that does not arise very often in the world of a stay at home mum / wannabe writer, to be 'just me' for two days.  To enjoy friendships in person that the rest of the year are virtual, to indulge in a bit of time to myself that if I didn't book and come along to an event like this wouldn't happen. 
For me the Bloggers Keynote is the pinnacle of the event.  They make you realise that other people have sadness in their lives, and that by writing about it you are not silly, weird or stupid.  You are all just trying to cope anyway you can, and for us, writing is one of those coping mechanisms.  The Bloggers Keynote is the absolute physical representation of a supportive and inclusive community.  A community that is called Britmums.  A community I am proud to say I am a part of.
And my ticket for Britmums Live 2015 was booked before I had even left the venue this year and I am looking forward to it already.
With special thanks to the following people for making this year so great : Sarah at Older Mum in a Muddle, Anya at  Older, Single Mum, Ericka at  Mum in the South, Ellie at  Mush Brain Ramblings, Amanda Jennings.