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.

 

 

 

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.

The Disability Diaries (The Life of J1) : The Biggest Battle

In the mountain of 'unknowns' we faced after we realised / officially got diagnoses / understood / accepted that my baby was physically disabled and not just 'developmentally delayed' as I spent a year wistfully hoping was the case, I had to start to face the fact that I was going to face 'issues'.

Like with anything that is new to you, you kind of just have to 'roll with it' and fly by the seat of your pants at the start (whilst frantically trying to research about the condition and what to expect / who to contact etc).  I had no real idea about who J1 should be receiving help from, what help J1 was entitled to, what services, therapies, equipment he would need and how would I go about getting them for him - how would I even know if he would need services, therapies and equipment.  Green, that was the colour of me.

As mentioned in 'We Just Don't Know' after diagnosis a flurry of activity started occurring through our letter box.  We were automatically booked in for various appointments with a huge range of 'ists'; physiotherapists, speech therapists, occupational therapists, paediatric specialists.  These appointments were 'investigative' so that the help J1 would require could be ascertained.  This, of course, was a huge relief.  I would not have had a clue where to start and it felt good to be seemingly moving quickly, getting J1 into see all these people that were going to help him.  J1 was successfully in the government 'system' and we were moving along at pace. 

I have never been one to 'go after what you can get'.  I have always worked and provided for myself and paid my taxes, never taking a penny or service, apart from school and NHS from 'The System'.  Therefore I never knew how to really 'deal' with it.  I so foolishly believed, that if my son needed something then the right people would identify it and he would be provided with it. 

But immediately everyone I came across pressed on the issue of 'getting what he was entitled too' with a little knowing 'you understand' nod and eye shuffle.  Little did I know that on many occasion you would have to fight to get even the basic things he needed, and of course that was what they were trying to tell me.  You have to remember these were not frivolous things.  Not luxury items.  They were things that J1's condition and the severity of it would need just to get him through day to day life.

I had no problem, and still do not in getting appointments to see the specialists.  Everyone J1 sees is very forthcoming and enthusiastic with their opinions of what he needs, what therapies, equipment etc would benefit him, it is easy to come out of these meetings, excited and buoyed about what this or that might do to 'rock our world'.  However, that excitement is short lived once you leave that initial meeting as it is actually getting those things, physically in your life, that is the biggest battle.

I have to say, up until J1 went to school I could not fault the quantity of help on a one to one basis that he received.  The physiotherapist would come to our house once a week for a full session and to refresh us on what we needed to be doing the rest of the week.  When he was old enough bi-weekly speech and language appointments came through.  We were put in touch with a fantastic special needs Health Visitor who informed about a Hydro Therapy session at our local Special Needs school and got us a place. 

We were also approached by another special needs school about a wonderful programme they ran called 'School For Parents' which we were lucky enough to be accepted onto once a week.  We even had an amazing carer come one morning per week who was qualified to look after J1 without me being there, she would usually take J1 for a lovely walk so I could have a bath, or go food shopping.

Those services / sessions I will be eternally grateful for because by the age of 2, J1 no long kept his arms in the classic curled up tight position, he could extend them, relax them, on some days better than others even now.  His thumb that used to close across the palm of his hand he is now able to use as you and I do.  And I attribute that to all the early help he received, and now continues to receive through the school system.

What I refer to in the title of this post The Biggest Battle, what we had and still continue to have the problems with is equipment.  Now equipment, I have learnt, is essential to being able to give J1 the most inclusive life we can.  He needs a wheelchair, but you can't have a child sit in the same position for 12 hours a day, so he also needs a 'house' chair (that he can eat dinner in, play in etc) so that he can vary between the two.  He needs a special bed, that is height adjustable and position adjustable for when you are changing him, dressing him, doing physio, hoisting him.  Then of course you need the hoist.  To assist with bowel movements and joint strengthening you need a standing frame so that he can be upright rather than sitting or laying all day.

There is NEVER enough money in the pot for every child to have these things.  Thus battle commences, and like at the start of any battle you go into reluctant, but you do it because you have no other choice.  You know people that you do not want to get stomped on will, but if your physio or OT can not get you what you need, you have to go to their superiors.  But my one word of advice to professions is this; do not lie to the parent.

The worst case of 'equipment battle' I faced was my first one.  I needed a chair for indoors (J1 was still young and small enough to go in a good buggy and I could still get away with a baby car seat) and was shown an array of wonderful 'life changing' options.  After spending a whole morning in April testing J1 out in the chairs and getting measured I was euphoric when I was told it would be ordered and with me in 6 weeks.  About 3 months later I thought I would drop a polite call into our OT, who told me that she had 'just discovered' the order had been lost and would be re-issuing it and it would be with me in 6 weeks.

Six months after the original order (and a further six weeks of the OT being 'unavailable') I finally got hold of someone who spun me the 'lost order' story again.  Incredulous that this could happen twice I stupidly accepted it and clung to the 'it will be with you in 6 weeks'.  It was at this time that we were put under the charge of special needs Health Visitor who took the bull by the horns and told me that particular department was out of funding and I wouldn't be seeing that chair until the following April when the new years money was received. 

Furious wasn't the word, for either of us, and her fury on the department did see us immediately receive a second hand chair to see us through to the following April and a specialist car seat.  It was a cruel and harsh lesson that I was going to have to toughen up.

That is why parents / carers of those people with disabilities have to find the energy to fight.  They have to find the energy to make those phone calls every day and push their case forward and get to the top of the pile.  You have to be the 'pushy parent' you never desired to be to get your loved ones name to the top of that pile so that funding pot hasn't run out by the time your application gets looked at, or that you aren't forgotten in that charities pile of requests.

But some days you just do not have that energy.  And you sit and cry and think 'Why when our life is already dealing with extra challenges should you have to take up that baton?'.  But if you don't no one else is going to charge in for you and do that battle cry.  Your child needs you to put on your boxing gloves and shiny shorts and fight their corner.  So you have to mount your steed, pick up your joust and charge.  Hopefully at the end of it you'll win.