My son matters!

Why as a society do we expect our more vulnerable members to accept less than we would ever accept for ourselves?

“Floor based changing facility”.

I kid you not, that is the term used .

I had signed Adam up to an activity for disabled children and queried the toilet situation for those who need a hoist and bench in order to “go”.

Adam needs a hoist to get out of his wheelchair and a bench to lay down on to sort clothes and switch to a different sling before being hoisted to the toilet. He prefers to not need changing. Much as I would. You too, most probably!

The reply included this, “We will have a mobile hoist present in one of the downstairs rooms, where a floor based changing facility is available.”

Was this an innovative product which I had just not discovered yet?
No, it is a mat on the floor.

Another stab in the heart. Another chink in my armour.

I have no intention of naming the company because they meant well and they do great things for many. The location is clearly not going to be easy to adapt and I get that, I do. I also appreciate that not everywhere has the facilities needed. They thought they had come up with a reasonable way to ensure that people with complex needs can come. They thought they were helping.

The way the term was used is what bothers me.

“Floor based changing facility”

It made it sound reasonable, when it isn’t.
It made it sound okay, when it isn’t.
It is a mat on the floor.
Call it what it is.

I really don’t want to sound “ungrateful” (I really don’t) because I know they tried to find a way.  But would you be “grateful” if when your children went somewhere the boys had a proper toilet and the girls had a hole in the ground? An effort has been made, after all.

Just call it what it is.

Had the reply said “We are really sorry but at this time we do not have the facilities required but we can provide a mobile hoist with a mat on the floor if that would help” I would actually be less hurt.

Another thing to consider is just how difficult it is to hoist a big person to the floor. I won’t even put Adam in that position in order to show you the reality, simply because he could get hurt. We used “Flat Adam” who is a couple of months old so slightly smaller than the real Adam is now.

Bodies are big, hoist frames are in the way. Which bit of Adam would you bump on the way down?

Bear in mind that the floor space has to also accommodate a wheelchair in a tilted position, a toilet chair and two carers, because it really isn’t possible without two carers. And that isn’t nice either, is it? Would you want an audience?

This post isn’t about complaining and it isn’t to make anyone feel bad.

It is to share how I feel and how my son would feel, if I took him there. (We are not going)

Because I want people to question things.

I want them to ask if it is really even doable.

I want people to ask if it would be okay for them.

I want people to think about how it would feel.

I want people to look hard, till they actually see.

Because I read that message and I felt so sad. (Maybe not everyone would feel that way, maybe I have different expectations than others.)

I felt crushed because I read that they thought this option was okay – they even gave it a fancy term.

I felt hurt that maybe people really think that is all my boy deserves.

I felt sad that he was going to miss out on what will, no doubt, be a fun event.

I felt burdened by the decision.

Do I put my son in a position where he will potentially be in danger, where he will end up feeling sad,  and where he might possibly feel a bit lacking in worth.

Just to have a couple of hours of fun?

No. Nothing is worth him feeling bad.

I have heard the words “Just put me in the bin” be spat from my boy’s lips once before.

I never want to hear them again.

 

 

 

 

 

 

 

 

Pink Pear Bear

7 thoughts on “My son matters!

    1. Thank you. I was so worried that people might think I am just being awkward because “something is better than nothing”. I am really not. Life is a fine balance when you are responsible for someone else’s physical wellbeing and their future mental health.

      We will find some other way to have fun.x

      Like

  1. Well done for raising these issues, and I think Flat Adam is a genius idea for raising the question ‘ is this doable??’
    Well-meant solutions are no good if not tried and tested, yet the organisers would be unaware of any problem, thinking they have neatly ticked all their boxes. Raising these questions is not complaining or ungrateful, it’s pioneering and positive, and I hope real Adam will get to go in the future, along with many other friends!

    Liked by 1 person

    1. Thank you. That is a really lovely comment which has raised my spirits.

      I am not a natural at putting my head above the parapet. I am not a naturally bold person. But I am trying to be what my son needs me to be.

      Like

  2. I would never want to hear my child say that either. It must have broken your heart. I don’t think you’re complaining at all – the only way people will know to be more considerate/make changes is by talking about it. I don’t blame you for being nervous about it though, it’s hard to be bold. Keep fighting for him x #bigpinklink

    Liked by 1 person

  3. Reading what Adam said to you, bought immediate tears to my eyes. I can’t imagine how this must’ve made you feel. It makes me annoyed when words and phrases are dressed up to make them sound perfectly acceptable, when they’re not. I agree that things need to be sold as they are, with no fancy wording, even if the intention is good. I feel sad that an organisation offering an activity for disabled children, think this ok, and lack the insight and empathy to see that it’s not. I still think your mission to highlight your issues is amazing, and thank you for sharing it with us.
    #bigpinklink

    Liked by 1 person

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