The Big Trip

Wednesday, 29 July 2009

Missing Pieces and healing times

Good evening dear reader

I know I've been a really bad blogger of late but I'm afraid I've just been weary beyond belief. The last 6 months have been a bit hard going physically but hopefully that will come to an end sooner rather than later.

Anyway, come Friday of this week I'm off work for three whole weeks - BLISS. It's been manic at work this month with everyone else taking holidays and me holding the fort. It's been good fun but a bit hard going at times.

However, even better, my darling boy is home this weekend - a double celebration methinks.

A good friend of mine, Trudy, sent me the link for this YouTube video:

No matter the country, no matter the family, what this guy says rings true to anyone who has any experience of autism, however near or far. In my worst days, or more to the point, on Ross's worst days, I will readily admit that I hate autism and what it does to people. Like most physical conditions/diseases/syndromes, it is so damned unfair to the people affected. I don't just mean the individual with the label, but everyone in their circle. How so I get by? I just remind myself that there's always someone a hell of a lot worse off - and sometimes it works.

A less well known fact, dear reader, about my life, is that I share it with my darling 22 year old stepson. Andrew is 22, gorgeous and as good-natured as the day is long. Full of laughter and cheek but never a cross word or unkind action. The fact that he has profound and multiple learning difficulties and is profoundly affected by cerebral palsy are really just a sideline fact. I wonder if you are ever walking in your local town or village and see someone
, obviously with immense personal care needs, using a wheelchair with support? Maybe because of our experiences I'm aware but do you ever give thought to the provision of toilet facilities for these people. I think it really is tokenism at best in about 95% of cases. What if they can't sit on the loss - with our without support? How would you feel if it was you or your loved one and they had to be laid on a cold dirty floor to have your basic needs attended to? I know you're wondering where I'm going with this particular rant and here it is. There is a petition you can sign online to help raise awareness of this deficiency and campaign for increased appropriate facilities, with changing beds - adult sized ones, ones which are variable height to help the carer's backs. I could go on and on about this particular issue but instead I ask you to take a dew minutes to click here and sign the Changing Places petition. If you're in England you can do the same here. Think about it - if you need to!

Right - here endeth the sermon!! All blogs for the next three weeks will be fun, fun and more fun.

Thanks for reading.



  1. Thank you for bring this to my attention Gill, I have printed the petition off and will get as many signatures as possible!
    Hope you enjoy your break!
    hugs Alyson x

  2. The one for England takes me to a download page not the signature page like the Scottish one!

    This is a great idea and your right to make it more publicly aware, on the other hand any public toilets that are open and usable would be a start down here...

  3. Hi Gill, a very moving piece, sending you buckets loads of hugs and sparkles...

    also have a fab 3 weeks off work, and a super dooper weekend with your special boy...

    love and hugs
    Maria xxx

  4. i do understand what your saying gill, and to keep you going, is knowing there is someone out there a whole worse off than you. and how lucky we are, ross has you. steven has maria, and sophie has alyson, and you are all brilliants mums to these children. i know its not easy for most of the time, but not one day would you be without them.
    and as for the loos, dont start me!!
    the disabled ones are always locked. now im bursting for a wee, and hubby is asking members of staff, for the key. or we have to wait for the janitor for it. in the mean time i see the ladies, thats open. ladies walking in and out. and i think, i should be able to walk in with them. go in have a wee be all comfortable again. but no, i cant go in, as i have to be able to walk. so, because you can walk, the toilets are open for you, so why not me? grrrrrrh lol
    big big hugs for you and ross. and for all the mums of special children.
    gina xxxxxxx