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.