Tired of him being a target

Sometimes I wonder if my precious son has an invisible dart board on his body that people fire arrows at trying to hit the bullseye. Sadly it certainly feels like he is a target in so many different ways and if I’m honest I’m so very tired of trying to dodge the constant bullets and protect him after doing it now for 16 years.

At first he just seemed to be the target of stares, cruel comments and rude remarks.

“Why is he still in a pushchair at his age?”

“Why is he still not talking?”

“Look at that boy flapping and pulling faces. He looks weird!”

I get that he draws attention to himself with his loud noises and mannerisms and unusual gait but there’s days I just want to take him out without others looking at us like we just escaped from the zoo or avoiding us like my son is contagious.

I’d like to blend in, go unnoticed, just be treated just like anyone else.

Then there the fact my son is the target of exploitation, especially when it comes to purchasing essential sensory items he requires to regulate.

Add the words ‘special needs’ to anything from nappies, to fidget toys, to clothing or educational products and the price immediately soars. He is punished for having a disability and requiring products that aren’t always available on the high street especially as he’s grown and got stronger. There’s no store loyalty points for buying continence products in adult sizes that are only available online or for help towards replacing smashed iPads that are essential as they are his only means of communication.

On top of that he’s a constant target for political point scoring almost every week.

My son is costly and whilst I understand that, hearing statements like

“We will bring down the benefits bill by getting more disabled people to work.”

Or,

“We are working towards a more inclusive education policy where mainstream is available to more pupils than ever before” (which in reality means closing vital special needs schools without actually increasing the funding and support for mainstream settings to allow more children to be included.)

only serve to show me how little value society places on people like my son.

Which leads onto the fact he’s always the first target when it comes to cuts and closures.

Cuts to school transport, to having the necessary escorts onboard to keep the children and young people safe, cuts to school budgets (which always affect those with additional needs first), cuts to community support, cuts to charities that provide respite, and cuts to medical therapies. While I fight against it all the time on his behalf it’s always the disabled who seem to take the biggest cuts often because people know they can’t fight back.

The bullets really are non stop and it doesn’t stop as your disabled child becomes an adult. In fact now my son has turned 16 he’s very much the target now of needless bureaucracy.

In the past few months we’ve had to have two home visits to prove his identity and ascertain his wishes for me to act on his behalf, which of course he doesn’t even understand! We then had a mental heath officer, a psychologist and an independent doctor all assess him separately to confirm what they all already knew from the copious reports I sent them: that my son lacks capacity and requires support in every area of his life. But even with all these reports and 50 other pages of evidence I still had to fill in a booklet that was 91 pages long just to continue getting benefits he’s already had all his life.

Once he leaves school the bureaucracy increases again and I have a feeling it will never actually ever end.

I’ll always be there for my son to protect him, care for him and love him. That job would be so much easier though if just for once he wasn’t a constant target every single day of his life just because he’s disabled.