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.

Special Saturday : The Special Needs Part of Our Life

This weeks #Special Saturday theme is to just generally sum up what is going on in your own world this week.  This is a good time to think about this because it is the last week of J1's school year.  Just yesterday we went on a fantastic school trip to Colchester Zoo.

Colchester Zoo is very accessible for those with wheelchairs apart from a very few areas, which do have large, steep gradient hills to get up and down.  However because there was a lot of volunteers we managed to overcome these.  I would like to think about getting an annual pass for the Zoo next year, when J2 is three.  Therefore I think that we are going to have to have a meeting with our wheelchair clinic about the possibility of getting some sort of motorised help for the chair. 

This will also help with another problem we are now facing.  Although  we are extremely lucky to live by the sea, you can only access the lower sea promenade by significant hills.  I am no longer able to get J1 up and down these on my own.  To be honest even if both my mum and I push we struggle.  This is very frustrating for all concerned, especially with the Summer Holidays imminent.

I am very much hoping that we do not have obstacles put in our way when we make this request.  J1 has recently been weighed and measured (height) and he is on a par with an 11 year old.  J1 is actually eight.  Not being a particularly big person myself, it is hard to accept that I am unable to even take my son for a walk and ice cream along the sea wall by which we live.

As I mentioned, it is the end of the school year for J1.  It has been a very different year for him as he went into a new class.  We were worried about how he would cope.  However, after only a short few weeks he had settled in well.  The class has been good for J1 in a lot of ways.  It has really helped his character to build.  He is developing his own sense of humour and is no longer so timid of other mobile children his age.  Up to this point he would meltdown if another child his age even said 'Hello'.

J1 does require a vast quantity of physiotherapy everyday however and there has been a few issues regarding this throughout the year.  I think it is always something that I am going to have to keep a very close on eye and reiterate constantly to all those involved with his care.  J1 can not move his own limbs with any real control.  Thus we have to ensure that we do this for him.  Can you imagine being set in one position for any length of time.  Think about how many times you shift position on the sofa, or in the car or in bed.  Remember that discomfort you feel if you wake up after a long sleep and go to stretch your leg?  That is a constant threat for J1, moreso because of the metal plates he has in his hips.

Another challenge we are now starting for face as J1 is getting older is his awareness.  This is not a bad thing by any means, it means his comprehension abilities are developing which is fantastic.  But, the negative side to this is he is also becoming aware of all the things he can not do.  He no longer wants to walk to the park with his brother.  He doesn't want to go out in the garden when the other children play on the trampoline.  He doesn't want to sit and have a drink with mummy in the local indoor play area while all the other children run around screaming and having fun.  He doesn't want to sit and have an ice cream while everyone else goes on the rides at the pier.  Who can blame him?

Luckily we have found a brilliant centre, quite local, that has some sensory rooms that he can enjoy.  This is great for rainy days (and there are plenty of those at the moment).  But other little activities that up to last year we could just about do (a few rides on the pier, getting him in the small gap on the trampoline) are no longer a viable option.

Therefore, it's time to spend this week thinking outside of the box and doing some research for fun things we can do over the six weeks break.  We have got a 'wheelchair bike' demo in August, with the hope that we will be able to obtain one soon.  J1 keeps asking to go for a bike ride, and absolutely adored it when we hired one on our recent trip.  Hearing him giggle uncontrollably, like other children do in the park or on the rides or on the trampoline - priceless.

I am also looking into the possibility of getting a wheelchair swing for the garden.  He thoroughly enjoys the one at school and would love to be able to take him in the garden to join in, every single day that we possibly can.  He deserves that.

In summary a lot of development is happening in our Special Needs part of life.  We have lots of calls to make, research to do and options to look at as everyday our wonderful little boy 'Grows Up'.

Join in Special Saturday by linking up on Facebook, Tweeting using the #Special Saturday, writing posts / note / odes.  Anything you want to do to help raise awareness of living with Special Needs and how amazing, challenging and rewarding it is.