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 : Doing it our way

I haven't posted about this before, because I didn't feel it was appropriate at the time, when we were in the midst of it.  But since I had a meeting yesterday to 'close off our case' I now feel I can.

 

I wrote, on several occasions last year, posts on how J1 was becoming much more knowing.  It had caused me much joy and equally as much pain.  It was wonderful to see his brain processing information as it should, and him comprehending situation we wasn't sure would be possible.  The heartbreak of it throughout however, was seeing him realise - for the first time - the barriers / consequences of his disabilities. 

 

He realised he could not run around the garden with his brother and cousins.

 

He realised he could not jump on a bike and go out and play.

 

He realised he could not rush off to the indoor play station at our local soft play.

 

He realised he could not stand up and jump on the trampoline.

 

It was a hard summer in that respect.  If your son said to you 'Mummy could you put the cycling helmet on me, and bring the bike over here so I can hold the handles and pretend I can ride it?' Wouldn't that break your heart too?

 

As the reality of his disabilities dawned on J1, the realisation that he is growing up mentally, settled on me.  I deliberated on my own, talked to my husband, parents, friends and professionals at the school about whether it was time to release the apron strings a little. 

 

I had to assess if J1 was perhaps ready for some company outside of just his family.  This was an alien concept to me.  It was one that I found hard to acknowledge.  We had always coped between us, but was that really best for him?

 

We were advised that our best course of action would be to get a referral for a social worker to look at our case.  The ultimate goal was to have our case changed to 'Direct Payments' (it isn't a payment in money - you get allocated 'hours' that you can book professionals/carers time).  After much waiting we finally were assigned a social worker, who came out for a lengthy discussion.

 

We explained how we felt J1 was lacking support in terms of being able to enjoy some social time.  We explained how difficult it had become to even take him swimming (his favourite thing) as we needed at least three people to be able to lift him in and out of a 'normal' swimming pool. 

 

We explained we had tried to book a special hydro-pool, but it charged by the hour (£22) and we needed two.  Also, because of its popularity if you wanted to secure a session you had to book in blocks of four weeks.  An hours swim - the other hour was spent undressing him, hoisting him in and out of the pool, getting him dried and dressed and hoisted back into his wheelchair - suddenly cost £176 a month.

 

We also explained that J1 had turned from a little boy that would have nothing to do with anyone but members of the family, to really enjoying the company of other people and we felt it would benefit him to continue to encourage that, especially as he get older.

 

The social worker agreed that his quality of life could be improved by him being awarded Direct Payments and told us she would suggest that we be allocated three hours per week.

 

We waited about four months.  We still had not heard anything.  Not being overtly pushy people (we seriously need to learn that we have to be).  After much chasing we received a sketchy call saying our Social Worker would come out and visit us.

 

The visit came around and after a good hour of polite, if somewhat strained chit chat I bit the bullet and asked what was going on with our request.

 

The answer.

 

Denied.  You are more than coping on your own.  Maybe try again in a few years when your parents are 65.

 

No one had even given us the courtesy of informing us.

 

We politely smiled and saw the social worker off.  Then the air turned blue around me as I vented my frustration.  I went home to my husband and burst into angry tears.  I felt we had asked for the absolute bare minimum for him and had been denied - after never asking anything of them in that respect before - even for all the years I had been a single parent with him.

 

Yes, that was right.  I had coped.  I had stood up and said I can look after my son.  So they say, great you don't need us at all.

 

The next day, I found I hadn't calmed down as much as I would have hoped.  Probably because I didn't feel it was me that had been denied, but my nine year old severely disabled son.  So I did what I know how to do best.  I channelled my frustration at life, at 'the system' and set about resolving the issues on my own.

 

I wanted to be able to get a family Gold Pass for the Zoo.  We had discussed that if we had been awarded D.P we could have had someone help us push him around the site, therefore it would be possible for just me and my mum to take him.  We needed extra man power to get him around the un-level terrain. 

 

A power pack for the wheelchair. 

 

We looked into it.  We applied.

 

We were successful. 

 

We can now take him to the zoo, whenever we like.  So on a 'bonus' pleasant day, when before we would have said 'It's a shame we can't go to the Zoo.' We can.

 

We thought about the bike issue.  J1 had loved the adapted bike at Centre Parcs but they are so expensive we had always been hesitant about approaching a charity for help with one.  Fuelled by the need to make up for what he had lost out on we booked a rep and had a fun morning with the suitable options.

 

That afternoon we filled in our submission and once we had our quote and supporting letters from the relevant professionals we posted it and crossed our fingers.  There was quite a lot of back and forth with the application but you can imagine our sheer delight when we got a positive outcome.  The charities were helpful and understanding.  And when we told J1 about the news hearing him say 'Can I have a red one?' made me realise that it was all worth it.  For Christmas santa delivered a ride cycle helmet and a matching red bell.

 

Those two things will make a huge difference to us all.  But most of all it is enabling J1 to experience childhood activities, such as going to the Zoo and for a bike ride, like every child should be able to enjoy.

 

No bureaucratic department is going to stop us from achieving that for our son.

 

Now we are waiting for our new Scout hut to open and although it will probably have to be my husband or dad that attends with him I think he will really enjoy it.  I am looking into the possibility of getting him a wheelchair platform swing for the garden.  We have also discovered some great offers at our local bowling alley for mid-week lanes.

 

And J1 does love a game of bowling... even if it is only with his family.