Reflection And The Need Of Change

Reflection And The Need Of Change

I don't think it is a coincidence that when I look back through my Facebook post from earlier this year I find my 'Owen starting school' post running parallel with my first 'Changing Places' posts.

As Owen started his very first term of afternoons at his Special Needs School, I wasn't really expecting the rush of feelings of loss and redundancy that I got.

For 3 1/2 years not only had I been his Mother, I had been his Carer and his Advocate.  Now I was handing over part of that responsibility to complete strangers for the first time. 
Having given up work to be Owen's full time carer. I felt that a part of my heart and of myself was being ripped away. I also felt unsure of how I was to fill the void.

Now do not get me wrong, I had plenty of things to do. Florence was at Morning Nursery,  so in the afternoons spending one on one time with her has been fantastic. But even that had it's limits, Florence loved her afternoon naps so no matter what ideas I had for us to do together, most of them were left undone.

I also still had a barrage of appointments to attend. Always things to do at home. It was just that housework and daytime TV were just not fulfilling enough.

With Owen starting school it really hit home that Owen was growing up. What became blatantly obvious was having a growing disabled child, opened up a completely new range of problems from a accessibility point of view. This was most evident on family days out during the festive period.


One of the major problems we have encountered is toileting. Owen can not use a standard disabled toilet, he still needs his pad to be changed. 
The trouble is he is getting too big for the typical baby changing units. Especially the small fold down ones. On these Owen legs go off the end. Not surprisingly as they are just meant for babies. 

What makes nappy changing even harder than just his size is the nature of the disability. Due to his type of Cerebral Palsy he has high tone in all his limbs, meaning they are tight and rigid. Adding to this the fold down tables wobble, this frightens him. When Owen gets upset he arches his back, uncontrollable arms flying everywhere. I have to hold him down in one hand, trying to calm him, while changing his nappy in the other. It is a nightmare.
If you really unlucky amongst all the drama you will accidently set off one of those Automatic Hand dryers.

The thing is there is a solution. The solution are call Changing Places or Spaces to Change for small areas. Both consist of Bench and Hoists facilities.
Great you think problem solved.
But no wait... no one wants to install these facilities there is just bout only 850 in the whole of the UK.
The more I looked into it the more I realised what a major problem this was.  I just did not understand why people were not jumping on this idea to install them where ever they were needed.

The more settled Owen became at school, the redundant feelings slowly faded away.
My need to do something positive was still at the fore front of my mind.
I needed to be pro-active in my want of change. 
 I have learnt as a special needs parent, you have to be willing to put up a fight for things you want for your child.

I read locally they were building new changing blocks as part of the local Cassiobury Park £6million restoration project.
I thought I would send a little tweet asking whether they were including Changing Places Facilities into the project.
to the right was my answer. 
I shared it on social media. The reaction was crazy. I was inundated with personal stories, pleas for help from other parents and offered support from a 14 year old boy who had just successfully campaign for a wheelchair swing in his local park who said he too needed these facilities.

Fuelled by a mix of Coffee, Anger, Frustration and  just wanting to do something positive for others this is where I would start.



http://www.mychangingplace.co.uk/