Having reached the decision that you need help as a parent of a child with special needs, what then?

Hang on a moment, that seemed easy!  I have yet to come across any parent who came to that decision easily or swiftly.  In fact, most parents I know who have special children do not get help and many do not want it.  After all, asking for help must surely mean that you are conceding defeat, failure?  That you are unable to do the most simple of jobs: be a mother?  And that’s before we embark on the question of relying on welfare benefits which can be very difficult for some; before we touch on the fears that social services may see you as a failure and take you children away; before the reality truly dawns on you that your child is not Norm.

What I’m trying to say, to make others understand is that we hate that we need help.  We come to this point out of necessity and desperation, often at our lowest ebb.  Should you come across a parent like me, who is getting what may seem to be a lot of help from various agencies, please try not to assume that we are “sponging”, that we are taking advantage of the system.  I hope that by giving a glimpse of the process by which we can access help, you may understand that it is a dreadfully intrusive, clinical and impersonal process which forces you to focus on nothing but the worst aspects of your life, of your child.

My journey through this maze started with a little boy who was not expected to survive to adulthood.  Tom’s hear condition and leukaemia were life threatening, and that label opens doors.  With that little sentence we enter the reality of my life.  My children have significant difficulties in life, and part of my job is to access every thing that might help them.  So I have learnt to play the game, to accept that certain words (when spoken in truth) will prick people’s ears.  Of course, when we arrived back in England with a little boy who was quite literally fighting for his life (oh, and his fight had a serious flaw in that he just wouldn’t eat), I didn’t know any of this.

I had a wonderful health visitor who knew the various avenues to follow.  So..

Crossroads – A charity caring for carers

We were referred to Crossroads, a charity that helps carers by providing a few hours respite each week.  I had no idea how to use such help.  I had been “coping” for months on my own while Nick went to work, driving hours to hospital for Tom and managing to keep the other two children afloat.  Now we were back in the UK, many things were easier.  The local hospital took over much of Tom’s care, we had an amazing community nurse and I had friends who were able to help.  So the idea of someone coming into my home to help was baffling, overwhelming and at a loss to make use of it.  And this is where a part of the system worked so well for us.  Crossroads sent us a wonderful lady with a wealth of experience who gently yet firmly took charge.  She taught me to rest, to go to sleep or have a bath.  To occasionally go out for a walk or even go to the dentist when needed.  She taught me that for a little while I could hand over and that all of us would benefit.

Our children’s hospice, Shooting Star Chase

Simultaneously we were referred to our local hospice, Chase.  How can I put into words the help and support they provided?  Going to the hospice was like stepping out of the world.  Tom’s illness stayed with us, but it was in some strange way safe and “ok” while we were at the hospice, sheltered from the outside world.  The peace there gave us true respite and there was always someone to listen.  We were with them for three wonderful, sad, happy and tragic years.

So from the time we arrived in the UK with our little scrap of a baby until he was three years old we were floated along the ocean of life in the boat labelled “life limited”.  All the care we received was provided by charity, a remarkable aspect of British society.  More remarkable still was that these organisations work so well with the “official” bodies such as doctors, hospitals etc…

The dreaded DLA form…

It’s safe to say that I didn’t have to fight for any of this.  The fight began when we were told to apply for DLA in Tom’s name.  Disability Living Allowance is a benefit payable to those who require more care than their “Norm” counterparts.  Application is via a form and backup from doctors and other professionals.  This is not the time or place to go in any depth into that form.  Suffice to say that it is long, involved and painful to complete.  One must detail all the negative aspects of the applicant’s life, and how much help they need.

As the mother of a child who was so ill, my main coping mechanism was to focus on the positives of his life.  And yet, I now had to look the other way.  And looking the other way took me straight into the deep dark ocean of grief.  For the little boy I did not have, for the little boy he might have been, for the pain he endured, for the treatments we so hoped would make him better but that could also make him so ill.  And it put me face to face with the fact that he might die.

I hate DLA forms.

With a vengeance.

Despite his diagnosis, treatment and all the care he needed (chemotherapy, heart surgery, tube feeding etc etc etc), Tom’s application was denied.  I am still fairly sure the denial was a formulaic one and that noone actually read the form.  But that day, the wind was taken suddenly out of my sails.  I had been convinced that asking for help was the right thing to do in spite of my fierce independence.  While filling that form out, my intelligence told me that Tom was indeed eligible for the help and that this was precisely why we paid taxes.  And yet he had been denied.

Stubborn as a mule? I can be, if needed!

Somewhere in that denial was born a little spark of defiance.  A sense of justice denied that was simply wrong.  That spark has little to do with my children.  The denial of fairness and justice is something I see every day and every day I am incensed by it.  It is left to those of us with the education, intelligence and strength (oh, and stubborn pig headedness) to stand up and say, “this is not fair, you are are not playing according to your own rules”.  In the case of Tom and his DLA, that battle was fought by my lovely health visitor.  A phone call sorted the problem out.

Oh, you may remember that I hate DLA forms.  Both of my boys are entitled to DLA and new forms need to be filled out at least every three years.  Last week I was told by Kesia’s paediatrician that I must apply for her.

I hate DLA forms.

This is how I tumbled into the world of respite.  Through little man Tom and his critical illness.  The next instalment is how we accessed respite and help for Zack, and how we have yet to succeed in accessing it for Kesia…