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Saturday, May 26, 2012

God Only Knows

God Only Knows What I'd be Without You - a post about E's Mum...

When E's mum and I got married I wanted the first dance to be to the Beach Boys "god only knows". I settled for the last dance and as an aside wore flop flops, something I swore I would do on my wedding day! The song makes me think more of her now than then - God only knows what I'd be without you

Anyway, E's mum is my wife, but she is so much more. She is the one who let me deal with the news about E in my own way. She is the one who encouraged me not to hide from it. While waiting for the news, it was her telling me that hoping was fine, but that E had Williams Syndrome and deep down we knew it.

E's mum has taken up a position with the Foundation. She has spent countless nights awake with E. She's been covered in unmentionables from the little love.

She does all of this with very few words of complaint and all the while putting up with me and my ways and still manages to indulge my hobbies and bring my boys along as a cheering squad!

Without her I'm really not sure where I'd be right now and don't like to think about it.

Why have I chosen today... well today is her birthday. I'm downstairs with the boys and about to make breakfast as the boys really want her down now.

So, E's mum, the person who makes this dad's journey into the unknown a whole lot more successful, fun and interesting, Happy Birthday from me and the boys.

Next time, normal service will resume and my journey into the unknown will have an E update.

It's Hard to Dance with the Devil on your Back

A couple of things which have been on my mind since my last post - the song lyrics of the title and a part of the storyline of one of my guilty little secrets.  The guilty little secret? - Desperate Housewives - I have watched every episode (and this is not because E's Mum watches it - in fact, she doesn't watch it at all!).

Watching a recent episode of Desperate Housewives, post Mike Delfino's death, his widow (Teri Hatcher) discovered he had a sister that she didn't know about who had severe autism and lived in a care home.  It turns out Mike also had no idea he had a sister, as his parents put her into a home rather than "suffer" the life of living with and caring for a child with these difficulties.  Things like that affect me a lot these days - and quite honestly would probably have failed to stir me at all previously.

While watching this, I had the lyrics of the title flash through my head.  I know the song was written about abusive relationships and things - but the line above still works for me - on bad days I think it summarises it quite well.  Honestly, there are days when you hear the little munchkin wake up at 5.15 and think that you can't do it again and again.  BUT, one thing I would say is that no one has said it would be easy, no one said having a little one with Williams Syndrome would be a delight and a joy every day, I guess that's why we were given the news in a very sympathetic way and everyone was so welcoming to us at the picnic last year!  They knew what was coming, we didn't....

So, when I'm having a tough day, and I feel like the devil jumped on and I can't dance through the day, I have used another guilty secret to combat it.  I am an avid watcher of a variety of shows on the History Channel - Swamp People, American Restoration, Pawn Stars - but the one which brings a weapon to my arsenal here is.... American Pickers.  The particular episode showed Mike and Frank "picking" an old bar which had a mechanical bull in it - and they each had a turn.  This took me back to  a trip to the USA some 22 years ago when I watched a very competitive mechanical bull competition - and how even the best were eventually dispatched by the bull.  What does this give me?

Well the attitude I start bad days with now is.... as long as I keep dancing and buck and kick more aggressively, the devil won't be able to hold on.  E, I think, knows this - he gives me enough reason to keep dancing every day - and on the difficult days I perceive more affection and love from him.

Time to put some music on - I think I'm going to need to dance my heart out this week - lots of appointments - and that's never easy!

Wednesday, May 2, 2012

"I Just Wasn't made for These Times"

The title of this post is slightly misleading - but over the last few days while I have been thinking about what to write about this, I kept coming back to something like, "I just wasn't programmed like this" or "I just wasn't made for this".  Well a lesser known fact about me is that I have long been a fan of the musical stylings of Mr Brian Wilson, especially with the Beach Boys - so I settled on this title.  In fact, it would much better be called I just wasn't brought up this way.

This week I have had a long conversation with the Department for Work and Pensions.  This is based on the fact we received a letter from them, stating that the application for E to receive Disability Living Allowance has been rejected.  During the conversation they were referring to this "standard" that the application had not reached.  This standard seems to refer to a mythical line by which all people of the same age can be judged against, as needing more assistance or not.  This is obviously much more complicated when you talk about someone who is one year old!  My reference to the "mythical line", may be unfair - but it is... because there is no way to find it out.  I would happily read all of the standards by which they would judge E and make my own mind up whether it is worth me spending some considerable time on the forms.  I object to spending that time only to be judged against something i have no access to.

Now this is where we come to me "not being made for these times" - I am an honest man - I am a fair man - BUT I am (as you may have guessed) a Dad.  In that I want to be honest and fair in my fight to give my boys everything I can.  I will not steal to do it, I will not lie to do it and I will be realistic in what I try for.  So I think it would be nice to be treated fairly and honestly.

Those of you that know me, however, will know I am built for a fight, both mentally and physically, I am not designed to shy away from the argument - especially if I'm right.  So DWP - you are on my list - it's not a long list yet - but I'm happy to open as many fronts in this war as it takes - and I'll recruit an army behind me if I need to - E has a big family and a lot of our friends will stand up for him too!  So I'm going to lobby for some open and honest governance in this country - and rather than just ask people to tell a story - asking for documentary evidence.  This is what I think should happen:

- Give people the criteria against which they will be judged.
- Give people the evidence standard which is required to be provided.
- When you write with a judgement, break it down into the full reasons why.
- When people call to talk about the poor quality judgement letters, don't take 2 weeks to call back.
- When you do call back, don't treat people like they are telling lies.
- When you call, don't treat people like they don't have the intelligence to understand.

This is not a forum for me to put Es problems in detail - and more importantly, this is something i have documented - I hope this is one which will be resolved quickly!