Wednesday, 26 March 2014

The Disability Diaries : The efficient PA

Wikipedia says this about the role of 'Personal Assistant' :
"...A personal assistant or personal aide (PA) is someone who assists in daily business or personal tasks... a business man / women may have a personal assistant to help with time and daily management, scheduling of meetings, correspondence, and note taking..."
When you are a parent of a child with special needs and/or disabilities you become a PA for your child.  Along with the normal roles of being a mother or father - care giver, cook, cleaner, entertainment provider - all the usual things we do in order to keep our children happy, clean and fed - a giant part of your life must be given over to an administrative duty you didn't know was possible or needed for someone other than a 'business man - or women'.
Luckily I worked in the administrative/PA field for 15 years prior to becoming a stay at home mother so it comes as second nature, but even for me, who alluded to a career in that organised and methodical manner it can be arduous. 
J1 is now 10 years old.  I am used to dealing with professionals and 'The System'.  I am used to the long waits, the vague promises and being passed from pillar to post to find out a yes / no answer.  Don't get me wrong usually, in the end, you get a result but to get there you have to ring, email, chase, note take, leave messages, and ping pong from one service to another in a manner that even Miranda Priestley from The Devil Wears Prada would be proud of.
I have days where I can not face it.  The weekly list of 'people to contact' sits staring at me and the thought of leaving another answerphone message that doesn't say 'Ring me back before I end up on your doorstep with my disabled child and you can see for yourself why I need X,Y,Z' is too much.
Then I will catch a glance of a photograph.  Of my little boy trying to smile from his wheelchair.  Or watch his video that he insists I take of him on my phone singing Katy Perry's 'Roar' (or whatever his favourite song of the moment is) and I realise this is my job in life.  He needs my voice.  He needs my PA skills.  He needs his mum and dad to chase these people and sit in those meetings. 
Then I can get into full flight mode.  One number after another is dialled, I speak brightly and politely, because honestly, we NEED these professionals on our side and as frustrated as I can sometimes feel with them, I do understand that a lot of the time their hands are tied, money is sparse and they have huge case loads.
We have been re-located for four months now and I am still trying to get new professions on board.  This is the fourth or fifth week of calling round child development centres, school professionals, doctors, trying to establish who I should be working with to ensure my son is getting the help he needs to live the best life he can with the hardships he endures on a daily basis.
He needs equipment.  He needs to see specialists.  He needs to have his abstractly growing hips and spine monitored.  He wouldn't choose to need all of those things.  I wouldn't wish it on my worst enemy but that is the hand we were dealt and it is the one we live with every day.  Any family in the same position knows that is enough to cope with.  Having the added work load of having to be as organised and on the ball as the best paid PA in the world is just something we do.
Files and files of notes, appointment letters, referrals, delivery notes, invoices sit in my loft.  Put away as a record of our life.  A life touched by disability.  Sometimes when I venture up there I look at it and feel proud, that it is organised and efficient.  Other times I want to kick them all over the cold space and see them flutter into oblivion screaming WHY HIM?  A reminder that this has been the way of it for the last 10 years.  Thankfully I don't have to go into the loft very often.
Why have I written this?  Because I have just put the phone down from this weeks phone calls and I am sitting and waiting for all the promised calls back.  I am home alone and there was no one to rant or off load onto.
So instead I decided to write.

Monday, 24 March 2014


I realised, just the other day, that I am very proud of those around me at the moment.  There must have been something in the air for the last 12 months because while I myself have come to a cross-roads and I hate to admit, somewhat of an identity crisis others have been squirrelling away blooming.
My husband, takes spot number one.  He has single-handedly got a business off the ground and although the odd argument over the length of hours he works sometimes raises his head, what he has done in the last eight months is pretty astounding. 
Then there is one of my friends, who took the plunge and left her desirable marketing position because, to be honest, the company she worked for didn't want her to be involved in her family life very much, and started out on her own.  Now she has some solid clients, chooses her own hours and does the school run without the heart-racing thought of 'Will I make it to work on time today?'
My other friend decided to take a whole life break because, frankly, it was breaking him.  He packed up his job, flat and social life to return home where his family needed him as much as he needed them.  In doing so, and taking some time out from a longstanding fast paced city life he managed to establish what he wants to do with the rest of his life.  It means going back to basics, back to college, back to studying.  But, he is doing it and making a change.
Another friend and fellow blogger has written a draft of her book.  Actually sat down and done it.  From the planting of a seed to a whole first draft.  Start to finish.  Oh and compiled, co-ordinated and published an anthology in the middle of that and maintaining multiple, fabulous blogs.  My literary wonder women.  Her writing should most certainly be checked out - Older Mum in a Muddle.
One dear person in my life has created her own Pampered Chef emporium, oh as well as running an online wedding and events d├ęcor service - Pistachio Inc.
An old school friend started her own dress boutique, another a baking order service and another a craft site.  I wonder if there was something in the water where we lived that maybe enhanced the entrepreneurial gene?
 If so, where is mine.  I would like to do a lot of things but am finding with much frustration that I am failing miserably at doing something I used to be renowned for being good at.  Starting and FINISHING a job.  I seem to have lost the ability to see things through.  I have plenty of ideas, but feel I lack any substance right now. 
Plenty of ideas but not plenty of time.  That is what I have been telling myself.  But I look at all the wonderful things those amazing people around me are doing and I marvel.  You are finding the time and will power.  You all are truly fantastic.  I aspire to you all.

Friday, 21 March 2014

Dear Blog ...

 Where to start, after seven months of not blogging, is a tricky one.  I guess a good place is to give an explanation as to the reason for the break, but in reality there hasn't been one, all definitive reason I decided to abandon Lynsey The Mother Duck for over half an annum.
Quite frankly I haven't wanted to blog, and on the occasion when the desire has returned I just have not had the time.  2013 was the worst and best of years.  A very strange mix that I do not particularly deign to experience again.  If I was a thrill seeker then maybe I would crave that rapid rollercoaster existence, but I am not and I do not.
I would never try and re-hash seven months in a blog post, but I believe the points to note are that we moved, again.  Actually scrap that, we didn't just moved we relocated.  This has meant our whole routine of life is completely different.  A new location, new nurseries, new schools, less hands on help with J1.  But I have to say, right here and now, best decision ever.  We all love our new abode and the change has made our little family flourish.
This would be one of the reasons for the lack of writing.  A re-location takes a lot of time and effort, not just in the initial move, but in establishing a life in a new area.  New routines mean 'spare' time has been even more sparse, and setting up house and schedules has been the priority. 
However, with the dawn of the season of spring - a wonderful time for new beginnings - things seem to now be in place and I myself have found a new routine.  My duckling free time has been divided into 'house-hold' running and writing.  It started last week and I was ecstatic when I hit my word count target of 7K, on my current WIP.
Then I thought of my little old blog.  Untouched.  Left wanting.  And I had the desire to write. 
So I sat down.  And I did.