Saturday, July 7, 2012
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....
Saturday, May 26, 2012
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.
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
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!
Friday, April 20, 2012
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.
Thursday, April 12, 2012
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.
Saturday, March 24, 2012
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.
Wednesday, February 22, 2012
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!
Thursday, February 9, 2012
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!
Wednesday, February 1, 2012
Saturday, January 28, 2012
So, back to the business of the day, that resolution. I have caught myself countless times since W-Day (July 8th), planning for the future. This has ranged from sorting childcare - I started looking at various options in September, despite E's mum not returning to work until January - through to making enquiries about building work we may be able to do to the house in order to provide for E's future, probably living with us. It has even gone through to looking at a property becoming available at the back of our house - a flat. Perfect location if he is able to live semi-independently.
Let me remind you (by you I mean myself), E is 9 months old. I am planning for major building works and possible property purchase for a 9 month old baby - I do believe I need a reality check!
So lately I have been thinking (as per usual, about the future) and the conclusion I have come to is that the future is a long time and no mater how far we get through it, there is always more waiting. I began to wonder what am I missing out on in the here and now - what might I regret allowing to pass me? So my New Year Resolution (Chinese or otherwise) is to live more for the here and now - and by that I do not just mean in an appointment attending care ensuring capacity. I mean in a roll on the floor, pull silly faces, get covered in slobber, have my fingers chewed, etc, etc capacity.
I'll let you know how I go - but the new way sounds a lot less stressful!
Friday, January 27, 2012
This led to E's mum floating and being quite suspicious. I decided divorce was a high price to pay to keep my little secret, so showed her. She read the whole thing and gave me very positive noises. I considered stopping it,but thought someone read it and seemed to like what i had written - even if he had a vested interest in the case. I thought longer, and begun to wonder what this cold be one day. While right now it is an internal dialogue and what is on my mind, one day it will represent my entire journey with the whole Williams Syndrome thing.
So i have my second member and this made me think about when I might publicise the fact I have been doing this. I didn't think too long before forgetting all about it. That was until E's Mum recently started a blog of her own and looked in to traffic and things. So I looked at mine - never thought abut it - never expected it - I have never told anyone about it. However, I have been viewed, a lot - USA, New Zealand, Russia and Germany. I'm amazed - truly amazed - spurred on, I have decided to tell people on E's 1st birthday. This is still for me and will remain that way until I feel that what I have to say can be deliberately aimed to help someone else. If in the mean time it helps someone, or someone finds it interesting, I'm glad - and I think I'd even like to hear about it.
Two posts in a week - maybe I'm really getting in to this - I've certainly been thinking more about things I'd like to get off my chest or talk about on here - hopefully you'll see some of them soon.
Cheerio for today world...
Wednesday, January 25, 2012
This is new to me, i usually have to reintroduce myself to my doctor each time i go and visit. So interaction with the healthcare system is a new and challenging minefield. This has been exaggerated by us apparently living in a difficult area. More on that later.
E was born and received initial care at Epsom hospital. This was chosen from 3 options for both children - ease of getting there, parking etc etc made it an easy choice. With E, the care has been amazing (to be fair it was great with C too - just shorter lived). Dr C is the lead consultant and has played a major part in the last 9 months of our lives. He gave us the news in a very compassionate way, he has guided Es care through a confusing myriad of tests and clinics, we receive the letters and turn up - this even includes a cardiac specialist making visits to Epsom rather than us travelling up to St Thomas's (Evalina) once every 3-6 months.
So far, you are probably thinking - sounds pretty good, where's the lottery? - Us too until of course the care requirements include "portage" and "therapies". This, in my language, is the non medical care - physio, speech therapy, occupational health. For this, apparently we live in a "diffficult area". This care is supplied through a doctors surgery - this is where the finding is provided - and then paid out from. So Epsom is one borough, our doctors is in s second borough and we live in a third. None of this stops us choosing Epsom as a hospital, or for that matter receiving care from our doctors surgery - however, this is where the simple inclusive system ends. Take a bow Kingston health trust - take a bow! Our surgery is in Kingston and they receive the funding for Ethan's care - however, it has taken 6 months, numerous phone calls and more letters than you care to think about from various medical professionals involved with Ethan's care. So, where are we now after all this - apparently they have accepted their responsibility (despite us living in a "difficult area"), and the latest is - Physio - high up the list, month or so; Occupational Health - 3 months or so; Speech Therapy - "wouldn't hold you breath" - you heard me!
Until very recently we were under the misguided assumption that this was portage - but it isn't. Portage is an all round service for pre school children with additional needs. The borough in which we live has now made contact about this and we are being seen next month!
So Kingston, my son is not important enough to you.... well this is how important he is to me. When recently suggested that if the hospital development care was shifted to Kingston as it may make it easier, i responded that i would sooner move house into the area covered by Mid Surrey!