Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

Dear Doctor

Dear Medical Professional,

You will ask about his medical history,
And I will repeat the story I have told 100 times or more,
The details fine tuned to the essentials I know you need:
He was born full term,
He has a 7 year old brother who is fit and well,
He is allergic to penicillin. 

You will ask me what happened,
And I will answer:
He is 6 years old.
He wasn't breathing for 7 minutes.
I gave him mouth to mouth.

I will hand over a careful typed piece of A4 paper.
It will tell you his hospital number,
The things he is allergic to, 
A list of medications and doses.
You will take it and smile.
You'll tell me I make your job easier.

I will stand calm,
And in control. 

You see my demeanour, 
my hospital bags packed and ready,
And you say,
You've done this before.
I'll nod and say many times.

But remember this;

That 6 year old is my baby.

That boy with the oxygen,
And the wires,
And the tubes,
Is my son.

I watched him turn blue.

The first time, 
The fifth time, 
The hundred and fifty fifth time... 
It was still my baby.

My answers may be more polished,
I may appear more organised and calm.

But he is still my baby.

Sometimes I lie my head on the bed beside him in A&E and sob huge silent tears onto the starched, white sheets.

Sometimes my hands shake so much, I hold them tight between my knees while I'm answering your questions.

Sometimes I hold my breath just to stop myself screaming, my throat burning from the effort of holding it in, a single tear escaping and betraying me. 

So please doctor, registrar, paramedic, nurse... don't be fooled by my tough exterior.