04 April 2008

Offer of advice to David and his family

Some of you may of read the entry "For the Love of Rachel" well I am great friends with this family and I thought I would share or should some of the conversation that David and I had recently

Hi Susie!
welcome home
Many Thanks! Good to be back!
We took a 3 day cruise with the girls to the Bahamas very nice nice to spend time with the little ones

David you don't know how close Rachel is to me it was just like reading my life unfolding.

I am so glad that you read her story! Thank you so much for your kind words!
its a pleasure

Rachel is in bed today. Had a teeth cleaning and x-rays. She is such a sweetheart.
I really enjoy your blog

There seems to be many nice people who visit your site.

Amy just came in and said Hi

The reason I say Rachel is so close is because I also wore dolls cloths, ok i wasn't that small but was premature, so as I say we are so close its unreal

But the main thing is that you grew up to be a wonderful person!

thank u

I am hoping the same for Rachel and Amy

I like to think I I have achieved most things I want too.

I think it is not so much the challenges that we face but how we as human beings rise to try to meet them.


It's the environment that makes people disabled

Excellent point!

Well it is because if there were things like lower kerbs lower door handles etc
there wouldn't be the issues


I hope you enjoyed my blog as much as I did your book my aim is to show it how it is
I really do!

is it how you expected it to be since we have met

I have been very pleasantly surprised

It is always easier talking to someone on the telephone so IM has been fun. It has also let me meet very nice people like you!

one thing that i hope you might realise is that there is hope for Rachel and Amy as they get older, what I mean is it is possible to be independent because I know parents of disabled children always fear for the time when they no longer there to look after them

Absolutely and taking to you makes me so much more appreciate that

That is a great fear of ours

it may just feel like a huge mountain and that you will never get to the top, Yes I can totally understand that fear and it is a real fear. Although there is one thing you can do to help Rachel and Amy, and i still do it today.

If Rachel can be independent and live happily it will be more valuable to Susan and I than anything Tell me..

Well it maybe something that u want to incorporate into life now and that is sort of 3 lists

1st is a list of everything Rachel and Amy if you wish can't do
2nd is a full list of wot they can do like use knife fork etc doesn't matter how small
then and this is the sort of action plan one the 3rd is a list of things that can be done eg small goals to help them and you etc to remove the can't items and place them on the can list. Eventually you should see the I cant list reduce and the yes I can do this expand, and as they get older the lists will forever change

That is wonderful advice. Thanks you so much I will share with my wife Susan!

By having the 3rd action one you can work on little things so that the can't becomes achievable and it might be that something is repetitive but and this is only something I have realised over last year or so which is that my cerebral palsy is slowly decreasing.

That is great advice!

And that is down to my own conductive education of repeating stuff because what is happening and I can only assume that it may work for others is

That is wonderful!

By repeating something by means of doing something in the same pattern, like picking up a cup, what happens is if you pick it up exactly the same way every time
then the signal realises in the brain that hang on a minute this is the same every time, it seems to bypass the damaged part of brain and resend it down the correct neuro pathway and reconnects properly.

I am a big believer in cognitive retraining!

So that Rachel's brain will send the correct message to her when she does that task

i have found since I started doing this movement with my reciprocal walker I can walk better and I don't have any muscle tightness at all, I believe that I have reconnected the pathways.

It shows just how much plasticity that is in the human brain

And I haven't had any medication for nearly 2 yrs plus the hard work to take advantage a different pathways.

That is terrific Susie!

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