Friday, 1 February 2013

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.


  1. I'm so glad that you turned the 'no' into a positive Lynsey, that you didn't let it grind you down or give up hope and instead used your determination and your initiative to get these fantastic results for J1. The bit about the bicycle bought a tear to my eye. Am so happy for him that he'll have his bike. Here's to a great spring and summer for you all - lots to look forward to. xxx

    1. Yes the warmer weather can not come soon enough, we should have plenty to keep him out and about this year :-)x

  2. Great that he is getting a social life and getting out and about - my special girl loves it all :) Are there any special needs social clubs for kids in your area like the one we go to?

    1. We have tried out a few but although they are special needs or 'disability' clubs they are still for more able bodied children than J1. The school run a holiday club for three weeks of the summer holidays, which we try and book him into for one day a week, as it is run by the people he knows from the school so they find suitable activities for him. He really loves that.x

  3. What a blow when you were denied the extra support.... but now so wonderful that you have the bike accessories and you can get about the zoo! For the most inspirational blog when the BIBS come around - you win hands down for me. You are a fabulous mum! X.

    1. It was. I really thought they would accommodate such a small request, given it would have enhanced his quality of life no end. But there you go. And I am not one to beg and claim I can not care for / look after or provide for him.x

  4. An incredibly powerful post. Thank you x

  5. I am so sorry you have to fight all the time - and yet, despite being turned down, you have found some positives and gained some new golden nuggets to hold onto and to use. Hope thses gold nuggets will give you continued fresh energy and joy for J1 too as he enjoys the interaction and his horizons are broadened. x


I would love for you to quack your thoughts along with me and will always try and quack right back.