The Disability Diaries : Admitting Defeat?

They say that asking for help is the hardest thing to do.  Is it?  I don't think so, in respect of disability I sometimes feel that actually getting the help is sticking point.  It appears, that time after time, you can ask for help but unless you have the staying power of an ultra-marathon runner, the skin thickness of a rhinoceros and the forcefulness of a stealth bomber, you are screwed.

 

We are a family that has always tried to cope 'in house'.  We have asked for nothing in respect of respite in the 10 years that our son has needed our constant care due to his severity of his physical disabilities courtesy of his condition of Cerebral Palsy.

 

Our mind-set has always been, he is our son and to care for him is our responsibility.  As a mother it is hard to believe that anyone other than those closet to him could ever care for him with enough respect and empathy and thus it has been almost impossible to let go.  However, we had to let him start school.  And with this came the realisation that there are people out there who can care for him that he enjoys the company of as well.  And by being so over-zealous with the apron strings, maybe we are letting him miss out on other things.  Others company.  Social aspects.  Broadening his own ability to trust.

 

Understanding this is one thing.  Actually loosening those apron strings, well that is quite another.  But you know you have to do it.  You have to do it with all children eventually, but when your child doesn't quite have the capacity to understand if someone is being mean, or mistreating them and you are not sure if they would be able to tell you it is much harder. 

 

It also forces you to think about the thing that you never want to think about.  What if you wasn't here.  So more often than not, you retreat, back to how you were keeping all care 'in-house'.  With just those that you trust implicitly.

 

But what happens when your son becomes your height and body weight.  When he slips down his specialist bed and you can't get him back up, or if you try you risk damaging your back, neck, shoulders?  

 

Injury.  A carer's biggest fear for themselves.  Not for the fact of the pain or discomfort, but what it will stop you being able to do.  Caring for your child.  You need to be fit and healthy for as long as possible so that at the very least you can still be the ears and eyes for your child.  So sometimes there comes a point where it isn't your choice anymore.  You have to ask for help.

 

But when you make that call to whichever service you think you need, you are just another voice on the end of the phone, asking for help from a system that can't really afford to help everyone.  You are starting at the beginning of a very long, bureaucratic road that is a bit like a game of snakes and ladders.  Get the right person on the phone and you can leap frog to the next level.  The wrong one and down you go, back to the start.

 

We once asked for help in respect of developing J1's social skills.  For him to understand that you can go and have fun like bowling, or to a club like scouts with a friend rather than an immediate family member, to try and broaden his horizons.  It was a big step, deciding to ask for that help.  To cope with the idea that someone else would be his carer while he was out in the big wide world - even just for an hour or two.  But, I acknowledged, it would be good for him.  It took nearly two years to get refused.  Because - we were coping as a family.  They made murmurs about standard 'send him away' respite.  But that was not what we were asking for.  We were asking for much less.  But never mind that.

 

This time I asked if we could look at getting some help overnight.  J1 requires someone to be in the room with him at all times.  Therefore either myself or my husband has to sleep in the room with him.  He is with us full time now, my parents can no longer offer to look after him for nights in the week, and although we do it without thinking, will this have a detrimental effect on our relationship long term?  People repeatedly tell me that you can have an overnight carer come into the home specifically to sit with a child overnight.  They normally say this with an amazed tone that we do not already have this in place.  Like it is our fault.  But I ask them -  CAN YOU?  Really? 

 

We do not seem to be able to make this clear to anyone I have spoken on the phone.  When, of course, you eventually work out that you are speaking to the right department.  This time, I was directed to a booklet of available help - guess what that booklet offered - help a few hours a week to help with social activities such as bowling or scouts.  

 

Frustrated much.  I think so.

 

So, another week has passed.  I have done what they asked me to do.  Look at a booklet that whoever was on the phone should have known would not be able to offer a service that I need for my son.  Another week gone. 

 

Why am I starting to worry about this now?  I was never a worrier because as far as I was concerned I would always be the one to look after my child.  Ah the innocence of my twenties.  That wonderful age where you do not believe you will ever really feel older.  But as I rapidly approach my mid-30's and I can feel that back twinge or that shoulder blade pull, and I do realise that my parents are now pensioners and J1 is a big lad, the realisation can no longer be avoided.

 

We need help.  It just grates me to admit it.  

The Disability Diaries (The Life of J1) : The Holiday of a Lifetime

I have indicated in previous posts that things have been getting tough with J1 in ways other than his physical disabilities.  I do not mean for J1, but for me.

 

J1 is developing a fantastic sense of real awareness which is wonderful in so many ways.  The downside to this is that he is also developing the understanding of frustration.  The understanding of things he can not do, that other children around him can.  Things he would like to do but physically is unable to achieve.

 

For me, this lead to trying to explain why he can not do things as easily as others may be able too.  To trying to remind him with gusto of all the things he can do.  To desperately try and think of things that we can do, altogether, so that he doesn't have to worry about not being able to join in with his brother or friends.

 

To J1, I have been a cheerleader of positivity and 'can do'.  In private I have cried, felt frustrated myself and very low.  It kick started that anger only induced by the feeling of extreme unfairness.  The feeling of looking for someone to take responsibility for what happened to J1, only to find that is as productive as trying to climb a mountain made of fine ash.

 

I went along to my doctor, having seen the signs of a slippery slope approaching, who referred me to a good counsellor.  From this some of the negativity has subsided.  This teamed with the sheer inspiration and opinion defying wonder that was the London 2012 Paralympic Games has propelled my energy back into being more proactive.

 

We thought about what we could do, as a family that would be amazing.  Something mammoth that would stay with the boys forever.  I knew what I wanted to do.  Have wanted to do for sometime.  Something that would be a big undertaking, requiring a lot of research, a lot of phone calls, a lot working with other people to make it happen.  A lot of saving.

 

We wanted Florida.  We wanted Disney, Universal, Seaworld, Water parks.  We wanted the holiday of a lifetime.  So we decided it is time to make it happen. 

 

After weeks of browsing hotels, for those with suitable rooms, amenities, environments we narrowed it down.  After numerous phone calls to the airlines 'special assistance' hotline regarding specialist flight seats, hold capacity (as J1's chair does not collapse), and what we could do with regard to changing J1's pad on the flight - we decided on a date to go.  After contacting many transport companies to find one with a wheelchair adapted vehicle that could also seat five additional passengers, plus luggage we decided on where we wanted our transfer too.

 

We built our dream holiday. 

 

We are making it happen.

 

We are going to take that leap of faith and hope that the people on the other end of the telephone are correct in what they are saying and that in reality we do not find ourselves facing a whole heap of challenges.  The biggest predicament so far has been the flight seat.  The childs flight seat would be ideal for J1, but already at 8 years old he is too big for it.  So we are having to rely on the different adult version.  I hope that the transport company have fully understood that J1 has to go in the car, in the wheelchair and the wheelchair must be fixed as a seat itself.  I hope that the hotel have reserved the 'accessible' room and do not just allocate it 'if it is available' when we arrive as we have read about in some cases before.  We can only hope that we were firm and clear enough in our phone calls.  We can only hope, because if we did anymore than that we would never have made the decision to actually do it. 

 

So, with sheer excitement welling in our belly, we are going to a place where J1 can get on the rides (well, most suitable ones of course - I don't think The Hulk will be sporting a wheelchair carriage but who cares we'll be in the marvel, magical land of Florida!).  We are going to a place where, for the boys, the characters they watch on TV will be real life.  We are going to a place where we know we will only need shorts and t.shirts and suncream.  

 

For three weeks we will take a step outside of the reality of life and build memories to stay with us all forever.  Roll on 2013 - watch out Orlando and Clearwater Beach we are on our way.