Episode 6: Return of the William's Syndrome Dad

WOW! That time I really did take a long break. But, I'm back and hopefully will get back in to it. I've missed it if I'm honest, so I guess the experiment has some very non-scientific results.

Moving house, the London Olympics, E's mum being made redundant and getting a new job, E's mum starting new job, finding new nanny and finally Christmas have really wiped out the back end of 2012.

To ease myself back in, I thought I'd give that long awaited update on E.

E is a lovely little boy. He loves cuddles, but only on his terms, and one of his favourite things (excluding peppa pig) is bouncing on my tummy. He has gone mobile, crawling after his brother, and racing to the front door to greet new people. He can stand with support and cruise around the furniture, but shows no desire to walk just yet. He refuses to learn to sign but insists that you ask closed questions. In response "yeah" means yes and silence or a hand in the face means no.

We get masses of compliments about E, how cute and happy he is. These people are right, but somehow I find the compliments hard to take. I know this is because he has Williams, and I know they don't understand. No idea if it is my guilt at not telling them or just my fears of the long term issues that come with the cuteness...

Anyway, health wise, E has been doing OK with the odd interruption for coughs and colds, but no major Williams related issues. Well, that was right until December, when we had a cardio clinic. E has now been scanned and measured and poked and prodded (including MRI of his heart). The upshot is that he is likely to need surgery on his aorta. E has supra-valvular aortic stenosis (best described as a pinch point just above the valve).

This has come as a big smack in the face. One which I am not sure we were really expecting. Oh well, we find out the recommendation of the panel this week and until then E is getting extra cuddles and we are all celebrating Cs birthday!

Be back soon...

"Happy" Anniversary

When I wrote my post, a little under a year ago, entitled W-day 8th July, I really didn't know what the year would hold - well I now have a pretty good idea, having lived almost every last minute of that year.  I guess I have actually been the Dad of a child with Williams Syndrome for nearly 15 months - but I didn't know it until 8th July 2011.  So what has the last year brought:

Well, fate brought about a big gap between this and the last post - actually it was BT, not fate. I have had no broadband and a load of jobs to do - we moved house.  We moved house in order to provide a long term home for E.  In theory we will not need to leave this house unless we become too old to get around it...  I would definitely not be sitting right here had it not been for the Williams Syndrome (although E's Mum had a little to do with it too).

E has lit up our lives, it's not easy to explain.  However, you would think that with the appointments, the overnight stays in hospital, the fighting to get access to therapies, the constant repetition of the basic tale of Williams would taint that but it doesn't....  E makes it easy because it is for him and he is a lovely, good natured little boy.

But it's more about me, E's Dad.  E is a little trooper - and never seems to let things get to him - wish i could say the same for me.  There have been times this last year when i have wondered if this is something i can do.  Well, I'm still here - and that's worth celebrating!  Still here, still learning and every milestone makes me want to help him get to the next one.  I have taken to seeking and/or listening to advice.

Anyway, you know all this - but it has given me a great opportunity to read over the blog and think about where I have come from.  After all, that was one of the things i most wanted to use it for.  So here's to the last year and all the learning, but more importantly here is to the next year - and to more learning - but more importantly to just enjoy being with E.  One thing this last year has taught me is that it is easy to watch time go by and miss the doing.  I have seen a lot and studied a lot - but perhaps i need to forget studying and watching and thinking and DO...

Finally, I asked a series of questions at the end of the post last year, and I thought I would revisit the same list to see how they differed:


Have i found peace with ths yet? 2011:No.  2012: No
Do i know anything about the new world i find myself in? 2011: No.  2012: Actually, yes I do.  I'm no expert - but I'm learning, bit by bit.
Am i ready to learn? 2011: Oh yes.  2012: Oh yes.... more than ever - its slow because you need to learn what is needed now - can't put 20 years time in place now.

Not my best post - but it was kind of an interim one because of the day - I have a couple planned that will appear here soon....

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!

"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!

Health and Happiness - what more can i ask

Since becoming a Dad I have realised that the modern world puts a lot of pressure on parents - although i understand all of it is self-imposed.  Your hopes and wishes almost need to be publicly displayed and financially planned for.  The competition for school places with that "outstanding" label - and the pride that getting the young sir or madam in to that school will engender, despite what I see as a completely random and arbitrary system at times being used to allocate the places.  This is not something you can do much about (aside from move next door, find God or, allegedly, pay for a new library...).

Let me first say that I have entered the system with C - albeit in a very early stage and I am very pleased with the efforts we have made on his behalf.  I am by no means looking at our family as existing outside of the system and looking in  - however, it has had me thinking since E turned 1 and thinking about what my hopes and dreams are for him - and whether the experience with E is changing how I dream for C.

This was all focussed by watching the "undateables" this week - on which there was a young lady called Kali who had Williams Syndrome.  For those that are unaware of the show, it looked at people with disabilities and their first forays into the world of dating.  Now I had deliberately avoided the rest of the series, in the assumption that it would be an entertainment show which made everyone look at the "Freak Show".  This was a real fear as I had overheard people talking about it in those terms.  However, an opportunity to see Williams Syndrome highlighted on national TV was unmissable for me and E's Mum.  Now Kali was a great advert for Williams Syndrome - here was a young woman who knew her own mind, she was bubbly and friendly - and that is what people noticed about her!

So back to my hopes for E...Do I hope he finds love, do I hope he does well at school, do I hope he lives independently, and has any of this changed the way I hope for C?

Well, for E I want his life to be happy, and as full as it can be.  I do hope he can one day live independently - but if that will make him lonely, plans are in place for him to be able to stay with us.  I hope I can get him in to a school where he with thrive (that is no doubt a relative term - but thrive all the same).  I want him to have friends and to live without fear of bullies and those that may take advantage of him because he has Williams Syndrome.  I do not care if he finds love as i hope he will always have the love of his family anyway - parents, grandparents, and when we're all gone, C and their cousins I hope will be a formidable family group to make sure E is always loved.  If he does find love I hope he finds someone who is really into him and that he makes a good boyfriend or husband.  I hope he lives his life with smiles - not bewildered as to why the world treats him (because i hope the world doesn't treat him that way).

So, what about C.  Honestly, I want the world for him - but I have been thinking about this a lot over the last few months... most of all I want him to be the sort of brother E will need.  i want him to care about his brother (not the same in my mind as care for him) and I would love to have instilled in him a protective streak that will ensure E always has someone looking out for him.  But I have come to accept what i want for my boys may differ in the detail, but healthy and happy is about all I can really focus on for the final result.  However, what i really want is for my two boys to be friends for the rest of their lives.  I would love to see, in my old age, them have a cuddle the way they do now before bed - perhaps talking about the rugby or football results.

Of course if they can both have successful careers and lots of money, we all know that will make life easier... and i guess that brings a final part to it - healthy, happy and as easy a life as possible.  Boys, best if you don't challenge this when it comes to homework time - I will start preparing the reasons now as to why it doesn't count for that.

Birthday Boy - One Hell of a Year!

Tomorrow, E turns 1.  That's a whole year since we made a dash to the hospital (C too) and just got there in time, but he was born in a room in the hospital - ok it was an hour after he was born before he saw the delivery suite but hey...

What a year.  I have heard for the first time of Williams Syndrome.  I have read more about a single disability than I ever thought I would.  I have totally readjusted some of my life views - and very much so the dreams and wishes for each of my family.  I have applied for and failed to get a specific job which may have helped me to feel useful to a wide community I had never really been involved with before.  I have started a mission to raise funds for a charity which will directly affect the ability of my E to reach the potential he has.  I have sat in a Faraday cage listening to repetitive vowel sounds as part of a study on E.

Why did i do all this - because of E.  Because, little man, I would do anything I could to make life a little better, a little happier.  Most importantly, I would do anything for just one more smile - despite there being no shortage of them from you.

So E,  here is to another year of growing and learning (you too if you want).  I'm sure it will start at about 04:30 tomorrow - and for once I will be very happy to see you, and wish you a happy birthday.

Next time I've been thinking about my hopes for the future.