**WARNING IMAGINATION REQUIRED**
Imagine me in a Miss World competition.
Obviously to do this, you’d have to believe I’ve abandoned any feminist ideals, grown a foot in height, enhanced my breasts and shrunk my waist.
But, bear with me…
Should I ever be a contestant on Miss World and the MC asks me what would be my one wish, it probably wouldn’t be ‘World peace’ or ‘Eradicate hunger’.
I would love these things to happen, but today what I would really like is: to stop fighting.
It isn’t that I’m a 12-year-old boy with an annoying teenage sister. Nor am I a martial arts student with Mr Miyagi breathing down my neck.
I’m simply the parent of a son with complex needs
And that means I fight.
I regularly dig out the boxing gloves ready for a fight.
With all sorts of people and mostly for things that I once took for granted.
Some weeks it feels as though fighting is all I do.
And I’m tired.
I’m bored of drawing battle lines, fed up of digging my stake in the ground and can’t be bothered with having to justify every little detail of my son’s needs like I’m a lawyer in Suits.
I would love to know what is available, identify what legislation dictates we should be provided, make a request and it happen. You know, like my son sitting with his family on the sofa (see my open letter to the Local Authority) or support to help our family thrive not just survive (Please sir can I have some more).
I’d rather not know that if I fight, if I challenge and work hard for my son, he’ll get better care, more options and superior equipment.
But sadly, whoever shouts the loudest gets the most, and it makes me so sad for those who don’t have a voice or don’t know how to articulate it.
I also feel sorry for those poor professionals who talk to me fresh faced and expectant because I come to every professional conversation battle worn and suspicious.
Communication is hard
Communication is even harder when you’re second guessing the person you’re talking to. When you’re automatically reading between the lines and looking for evidence you can use to support your stance at a later date. But that is exactly what parents like me do. It’s what we’ve learned to do after being let down, dismissed and underestimated.
And what makes it that little bit worse;
Fighting is accepted as part of parenting a child with additional needs
Many professionals have said to me;
“You have to fight. It’s a shame you have to fight for everything”
Fighting for services, equipment and care is as routine as laundry in the life of a parent with a disabled child.
It has to be done and if it isn’t, it grows like my dirty washing pile until a festering and smelly heap infiltrates my whole home. Some weeks I cancel appointments and avoid a professional encounter because I haven’t got the heart or emotional energy for it.
Sometimes I can’t face the washing – or the fight.
But if I don’t do it, I know I’m just delaying it for another day.
Because for as long as my son is alive, being his parent will mean I can’t hang up my boxing gloves. I will wake each day ready to fight.
I’ll fight to give him a voice.
I will fight to provide him with new opportunities.
I’ll fight for his dignity.
And I’ll fight to ensure he experiences life as a full member of our family.
So, it seems I’m left dreaming.
Not so much for swaggering down the catwalk in a leopard skin bikini, but simply not having to fight.
*To all you lovely professionals whose job it is to play piggy in the middle between the managers that say no and the family with needs. Sorry – I know the last thing you want is ear ache from a cranky parent like me.
Written by Rachel Wright in February 2017
For more truth telling you can read Rachel’s memoir, The Skies I’m Under.