"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.

Would I Change it?

So,  following on from "What if we had known?" is the perhaps more relevant question (because we didn't) of whether I would change what E is.  Now before anyone gets me wrong, E is my son and that remains, and he will be every bit as loved and cared for as his brother, every single bit!  I will always have a careful planning eye on E's future because I will always want to make sure he is looked after.

I guess this is something i was always going to ask myself - would I change E if I could?  I have read a lot recently about parents of special needs kids saying they wouldn't change them for anything, and i get the impression that this is part of the way people deal with things.  Again, like the last post, I am not here to judge anyone, just give my thoughts and feelings and look back on them one day just to see how things change along the alternative route life appears to have taken.

So, where do I stand on this?  I would give everything I own, just not to here the words E has Williams Syndrome. If one of his Dr's told me tomorrow to leave the house and everything and start again and E would not have Williams Syndrome I'd get up early to get out first thing and start again.  I love E, and I know he wouldn't be the same if he didn't have Williams Syndrome, but the over riding thing here is that, he wouldn't have Williams Syndrome!  I would have to worry about him like I have to worry about C, but not all of the additional medical and future concerns.  I will always be proud of him, happy for him, sad with him.  I will try to bring him up to be everything that he can - but that doesn't change the fact that I would happily give my own life if it meant E would live without the difficulties which are likely to come his way.

Both my sons are cute, both amaze me, and both make me happy and unhappy in their own little ways and whatever i can do to make their lives full, fulfilling and fun I will do.  Frankly, if one day in 30 years time, my sons come and watch a game of rugby with their old Dad I'll be happy.  Interestingly, E having Williams Syndrome has made me even more determined to let both of my kids follow their own path, as long as it is inside the law!

I would like to add to this, that C is susceptible to Croup - and for the record I would change that too!  The trip to hospital he took in an ambulance made me realise again that E isn't the only one who needs watching and caring for.


So kids, print this and test me on it one day, lets see how I did.  Although if the offer is ever put, I am not sure you'll be able to print it, read it or that i will be able to write any more.

Next up a post about more fundraising.

What if we had known?

Due warning: this is not an easy post to write and is not likely to be an easy post to read - but its what's been in my head - so its coming out - it has taken me three weeks to get to this...  This was brought up in my mind by one of the things I look at and it got me to thinking.

When E's Mum was pregnant with C, we had that conversation while we were awaiting the result from the nuchal scan, which is used to screen for Downs Syndrome.  Any expectant parent is excited by the early scans, but that one held a real sense of dread for us - what if they told us the news we just didn't want.  Well, we had talked and talked and talked and both of us had decided that we would accept the news and work out how life would change and roll our sleeves up and deal with it - but that it would likely mean we would stick with one.

So, fast forward a couple of years and C is a mad little toddler, who has come out from his little infant ailments and is strong, healthy and so very much a boy!  E's Mum is now pregnant with E and we find ourselves having the same conversation - and the conclusion is pretty much the same - why wouldn't it be? It was the decision we came to the first time - and we didn't need to use it, so decision remained the same.

Now don't get me wrong, there is little chance of scanning happening for Williams Syndrome - it affects 1 in 20,000 approx and beyond that, i am not certain anyone has ever been able to determine an easily detectable test for it in utero.  However, E had extra scans focussing on the heart due to a variety of issues i had.  Perhaps they may have been able to tell that there was something not quite right with his ticker?  So, what if they had been able to, what if they had said, "E's mum and Dad, E has Williams Syndrome".

Well, I don't think it would have changed a thing.  We had had the discussion first time round. If I'm honest, i think second time we had the talk without really thinking it would come to that (how wrong we were).  It would have allowed us to prepare, it would have allowed us to work out how bad things might be.  BUT, the bottom line is that we had both signed up, when it was the specific test they routinely undertake, to play the hand we're dealt.

I do not truly believe you can know what you would do in that instant, unless you are in it.  Genuinely.  To a certain extent we have been put in it - we were told by E's Dr,  and it felt like that moment - i never want to forget  how it felt when we drove home in silence, flopped on the sofa and started googling like mad.  I don't want to forget because I will then never know how far i have come from my lowest ebb.  We had no choice, we had no time, we had a piece of news which changed our lives and our plan for our family in an instant.But, what we did have was an 8 week old baby who needed a bottle, a nappy change and a cuddle every now and then (oh and he had something called Williams Syndrome).  We had E.  E was E.  He had this little character, not much but he had it.

What all of this taught me, is that you can never know what someone felt when they made a decision - and what I feel may be very different to what anyone else may feel.  Some of my more held beliefs remain in me - but i never think too much about other people's decisions anymore - they have their reasons and I don't believe i have the right to consider them as anything but just that.  This has been written for me to remind myself of this exact sentiment!

Fundraising Focuses

While I work on a couple of posts, which are going to take a bit of emotional energy, I thought I would share some of the stuff I posted on FB when I was fundraising for the Stroud Half Marathon last year.  I decided to focus on some of the aspects of Williams Syndrome (positive and negative) and looking back on it, it was probably what I was doing instead of this in my quest for self counselling.  I have recorded them here, in order that I can look back on the things that I was learning in the early days of knowing about E.  Re reading some of them makes me realise I must have been looking at it in a positive light as I was picking out things I thought people would educate and challenge people.  Well here they are - but I'll be moving on for my next post and be back to the internal.  Hopefully have a job update by then too:

This weeks comment is brought to you courtesy of Stephen Fry and his recent series "Fry's Planet Word". I watched the first episode last night and Mr Fry was explaining how the difference between humans and chimps in terms of speech comes from very slight differences in Chromosome 7 - this caught my attention as chromosome 7 is where a micro deletion causes Williams Syndrome. One of the symptoms of Williams syndrome is a strange change in linguistic capability. Williams people often start speaking late, but they make up for lost time, catching up with and sometimes surpassing their peers in ability. However, while their speech is strong, their understanding of what they are capable of saying is not. This hit home, when in conclusion to episode 1, Mr Fry went back to a family home where there was a two year old girl. He explained that she was speaking in sentences and learning words all the time, but that she understood more than she had yet learned to say. I was left thinking of the 25 genes that are missing from E's make up (from Chromosome 7) and how they have turned that completely around and that he is likely to be able to say far more than he is capable of understanding - a fact that could affect his education, potential work and social aspects of his life greatly.


An easily visible symptom of Williams Syndrome is the unique set of facial features that come with it. They are described as Elfin looks - and generally show a slightly larger forehead but very narrow face below the cheeks. Many Williams people suffer dental problems which become a large part of what people see. But what they have to contend with is balanced by a smile that is nothing but addictive and infectious - E can already make me smile on my worst days just by giving me a grin. I think ear to ear smile was written about a Williams kid somewhere.


Williams people are often found to be highly sensitive to sound. This is caused by an unusual enlarging of parts of the inner working of the ear. It is possible that E and other Williams children will need to wear ear defenders during every day activity to protect a very delicate part of their body. This can cause a great deal of distraction and discomfort at times. However, many Williams people are very interested/talented in music and indeed the enlarging of the areas of the ear is often also seen in professional musicians. This shows the positive balance which comes from some of the difficulties which Williams people have to contend with. Spotify gets a work out keeping music playing in the house right now!

I will be doing a little bit of work on the page soon to properly set up the media links,and to the basic information page - start making this more of a resource for those that come on in and want to learn a little more.  It would appear that since E's Mum started a blog, I have a few visitors.  Glad to have you all, but please forgive the predominantly internal nature of what I write.

How Far Will I Go - Apply for a New Job?

E's condition has made me wonder just how far I would go to in pursuit of doing all I can for him.  Recently, an opportunity came up which would test that directly - a job opportunity.  Without going in to too much detail, this job opportunity is an area I had been thinking about in terms of Williams people and their vulnerability in the world.  So what do I do?

I have done the same thing for a living in one guise or another for 13 years (since I entered full time permanent employment).  It's what I know, and I even get some satisfaction out of it.  Don't get me wrong, it is not perfect and I have my issues with it - but its what I do!

Well I have prepared my application, I have written against all of the competencies and entry criteria and I have bought it home to review it.  It is my intention, tomorrow, to send the application off and then to wait until the 8th  for shortlisting.  Honestly, I do not hold out much hope for my chances of this, a major confidence issue when it comes to job applications coming out there.  But, I will apply and I will hope.  I would love to get the job - I already have so many ideas for it.  In fact I have so many ideas that while I may not have the job, I will bring my ideas to fruition in one way or another - although it may miss the wider audience available with the job.

So, wish me luck, cross your fingers, do whatever you do when someone wants some positive vibes - I really want this job - and that is how far a Dad on a journey into the unknown will go!

P.S. I would like to note that I also want to do as much as I can for C - however, I understand that the two are very different things.