Additional Needs

We Need to Talk About the, ‘Hard Stuff’.

Posted by Miriam Gwynne on 27th August 2018 Additional Needs, Advice & Support, Disabilities

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I once wrote about some of the hard stuff, the taboo things, the unglamorous and really challenging things about living with a child with complex needs.

I was slated online, I had blogs written about me, I lost friends and even worse I had death threats sent to me that meant I had to get the police involved. All because I dared to talk about the hard stuff.

What people don’t realise is we NEED to talk about the hard stuff.

I asked recently on a Facebook group for parents of special needs children if any of them ever felt like they had post-traumatic stress disorder or anxiety related to raising their children or if any of them had felt they needed counselling.

The answers were incredible.

So many parents of children like my son are struggling in silence.

Why are we not allowed to talk about the hard stuff?

Some reasons I have been given include:

It is disrespectful to my child to talk about anything other than how wonderful he or she is.

(Yet it’s ok to talk about real life with non disabled children in all its glory?)

It magnifies the false belief that disabled people and their families need sympathy and to be pitied.

(Sometimes our children ARE suffering so is sympathy such a bad thing?)

It makes out special needs parents are some sort of perfect species and better than anyone else.

(We are only doing what needs done - if others see that as super human, then that’s their issue, not ours.)

It perpetuates the thoughts that abuse to the disabled is OK, after all, they are such a burden.

(If ALL we spoke about was the hard stuff then maybe, but I don’t know any parent who doesn’t delight in showing the wonderful side of parenting a disabled child too. It’s about balance.)

So for all these reasons, and many more, parents of children with severe and complex needs have learn to be quiet about certain aspects of their lives and instead only share the glorious and inspirational moments of having a disabled child.

Which leaves parents feeling alone, anxious, misunderstood, desperate and vulnerable.

They live one life in public and a totally different, very challenging one, behind closed doors.

So what’s the answer? The answer is simple: we need to talk about the hard stuff too.

We need to talk about how hard it is to clean poo from a child whose body is almost the size of the parents.

We need to talk about hospital stays, the effect this has on siblings and spouses and the financial burdens of it all.

We need to talk about seizures.

We need to talk about the stress of giving medicine daily to a child who fights with everything in him not to take it.

We need to talk about lack of sleep, lack of respite, lack of services and lack of support.

We need to talk about our worries for the future with a child who will need 24/7 care.

We are not looking for sympathy and we don’t expect answers. We just need to talk about the hard stuff because otherwise it eats away at our hearts and minds and destroys us.

Please let us talk, both privately and publicly. Our lives don’t deserve to be hidden any more than our children do.

Thanks!