Who will care for my child when I am gone?

Who will care for my child when I am gone? Why do you hate us so much?
If you have kids you’ll know that feeling you have, that terrible worry if anything should happen to them, and you go and check on them, in the day or at night, to check they are OK, that they are breathing.

My child had tonsillitis and had been unwell for a few days. As a concerned parent I continually checked on my child while they slept, but for us that nightmare came true – my child was going into a coma. 4 months later and we are at home and my child now has a brain injury.

You imagine that families like mine get everything. We don’t. Where we live we didn’t even get discharged to a service as there isn’t one. The local primary care was being sold off so there was less than no services for a child who needed 24/7 care, lifting and handling and couldn’t walk.

I couldn’t work so had to apply for benefits. They are not automatic, you have to supply medical evidence and  it takes weeks to be processed and even then it doesn’t mean you get anything.

The school at first were dreadful. My child was bullied and excluded by both staff and pupils. My child had a statement but this was ignored. Both my child and myself have had to endure the exclusion by other parents and children so we are very isolated. Other parents seem to think being a bigot about a disabled child is acceptable.

I have had to learn to fight for everything, learn the law and be my child advocate. We live in poverty and the insecurity around benefits is horrific, I lie in bed awake at night wondering if what we have will be removed and then how will we eat?

Everything  we have is second hand and it’s hard work constantly having to search for clothing and household items, the constant rationing of utilities and resources is also exhausting.  Sometimes I wonder why we go on, we are so hated in this country.

I fear for my childs future in a country that hates and despises disabled people,  sometimes I think that ending it all for both of us woud be a better option than living like this. If I wasn’t here then who would care my my child?  What sort of life would they have without me to care for then and protect them? Why are we hated so much?

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One thought on “Who will care for my child when I am gone?

  1. I’m so sorry to hear of your experience and the shocking behaviour of the school which should have to answer for this and make the right adjustments to support your child. We have some great work going on across the country between police and self-advocates and local disability groups on hate crime – but also supported by shops for example,who will help people if they have a problem. One issue is helping people understand that no such behaviour should be tolerated and early intervention may stop later escalation. We really still have some amazing care supporters – people who do support disabled people and genuinely care about them and agencies, particularly charities, whose mission means the chance their values will last. Some of us would prefer local charities who know their people and whose people know the person in charge as it is far more than a contracted service but provides a kind of family to help people get the lives they want and will stand up for them. If you can find out who your local charities are and talk to other families who mahy know who’s good – and if they start supporting earlier than adulthood find out how to get some support now so you get a relationship you can trust. And if you have a disabled child you should get help from your local authority too.

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