Dance to the Music

Tom has found his singing voice. He chose his own improvisational microphone too, somehow innately understanding what would best serve. This is only one of a number of odd nuggets of understanding that Tom appears to have been born with, the most noticeable of which is his grasp that putting a box on your head is always funny.

There are no box-on-head moments in this clip. Just singing.



Dance To The Music from Jason B and Vimeo.

Of bedtime and lullabies

Every time I put Tom to bed I recall the short weeks of unhearing bedtimes. I don't dwell on them - its more of a fleeting thought - but its there.

While Tom was in hospital, recovering from the meningitis that deafened him, we re-established his routine as quickly as we could. We felt, rightly or wrongly, that the restoration of any normality, however small, would reassure our desperately weak and sickly son.

Who am I trying to kid - in those early days it was as much for us as it was him. 'Things will be normal again' we told ourselves, sternly just in case we began to doubt it, and that included the bedtime routine. Since Tom was a few weeks old this had been the same: a story followed by a well established medley of 'Twinkle Twinkle', 'Baa Baa Black Sheep' and 'Row row row your boat' (the crocodile version) and finishing with his lullaby-playing music box. We knew he couldn't hear us but we felt it vital to carry on regardless. Stifle the tears and emote the songs with all our hearts. Switch on the dim light and soothing bubbles of the music box and hope that the visual stimulation went some way to filling the gap left by the absent tune.

More than a year on and the basic routine hasn't changed a jot. Tucked up in the Racing Car Bed we read a book or two (current favourites include Hairy Maclary and The Smartest Giant in Town), discuss how nice Tom's swamp is (the whole Shrek and Donkey thing shows no sign of aging), and then sing.

Occasionally we try and get Tom to sing the nursery rhymes to us - he knows them inside out. The best I ever get is:

'Twinkle twinkle little star,
howiwonderwhatyouare,
that's enough daddy,
its my turn now'

Clearly the last two lines don't scan as well as the original but its creative. We finish with a lusty scream after which Tom whips his coils off and I count my blessings.

It could have been so different.

Careless talk...

We were discussing Tom's love of lazing around on weekend mornings. Nik and Tom had made it downstairs by about 10. I had been up a little while longer, indulging my passion for masochistic labour by laying floor tiles in the kitchen. We were in agreement that such tendencies on the part of our son were only to be encouraged, untouched as he is by the guilt that seems to afflict me whenever I attempt to laze around.

I made some jokey reference to my Calvinistic attitudes and, somewhere a few feet behind me, a little voice piped up -

"Daddy say 'Hey protestant boy - get up!'"

quickly correcting himself

'Shrek say 'Hey protestant boy - get up!'"

That boy is going to get me into trouble one day.

As I write it has just turned eight on Monday morning. I've been at my desk nearly half an hour (not working, I grant you but the intention is there.) There's no sound from Tom's room. This is usual. Parents of young children, are you feeling the envy?

'I am Donkey'

My son calls me ‘Shrek’.

It started out as impromptu roleplay after putting in some valuable (and educational) DVD time but has now evolved into something a little more substantial.

‘Daddy, you be Shrek. Tom-Tom is Donkey’ – the central casting was settled pretty early in pre-production and now, with Mummy being ‘Princess Yona’ (‘pretty Yona’ rather than ‘green Yona’ thankfully) and numerous other family members rotating the minor parts, we have a well-formed ensemble piece. We have tried to be sensitive around who gets to be ‘the Dragon’ but, inevitably, the odd grandmother has had to swallow any objection. He is nothing if not a forceful director.

Tom has become quite ‘method’ with regard to his part. He is tending to walk on all fours when the opportunity arises and demands to be patted. This has rubbed off on me. I emerged from the shower the other day with a surprisingly forceful ‘I’m an ogre!!’ (and accompanying growl) which the director decided, rather uneasily, was ‘quite scary’.

Tom now refers to our bedroom as ‘Shrek’s swamp’, much to his mother’s amusement (I’ve been wondering whether the whole Princess Fiona thing could be tipped the other way with a little prompting). Luckily he has decided that his version of Donkey likes to sleep in the racing car bed rather than on the floor of his personal ‘swamp’ although I’m fairly sure it has crossed his mind.

There’s no sign of this particular production being wrapped up just yet. I left the house before he woke this morning and got very grumpy with Nik when he discovered that ‘Shrek’ wasn’t available to ‘put his ears on’ for him. Donkey is very conservative when it comes to his routines.

So, while I’m not averse to stomping round the house burping and growling for a little while, I would like an opportunity to extend my range a little as I fear typecasting. Anyone any idea how long this might last?


I am Three!!

Following on from yesterday’s post, today (7th) is/was the long awaited 3rd birthday. Among Tom’s numerous declarations to me during a very sweet phone call this morning were:

‘I am three!’

‘Opening the Tellytubbies present!’

‘I got a big Lightning McQueen!’ (thus relegating the old ‘big Lightning’ to merely ‘middle-sized Lightning’ in the pecking order that now stretches to five. I hope he doesn’t demand to sleep with all of them).

And of course

‘Bye-bye Shrek’

So I was talking to my son on the phone. Tom was quite the chatterbox during the call and was responding to direct questions rather than parental prompting. And it wasn’t just with me. He wants to hold the phone like everyone else does, i.e. next to his ear rather than his coil, but with a bit of receiver holding from Nik he had quite the detailed chat with his grandparents and uncles too. Told us all a pack of lies of course, but that’s not the point.

We talked. On the phone.

'When its my birthday I be three!'

This has been Tom's stock answer to the question 'how old are you?' for the past couple of months. Its also been his stock answer for a number of other questions too though, including 'What's your last name?' and 'Where are we going tomorrow?'... He knows that he has been told the appropriate response to a number of things - its just that sometimes people ask the wrong question.

He seems to have nailed the concept now. It has been birthday season for Nik's ante-natal class for a few weeks now and with each party the understanding that soon it will be his special day has grown. We went and confused matters by having a 'Hey, look how great Tom is' party last weekend. We made the foolish assumption that friends and family would understand that this wasn't a birthday party. Just because it was within 10 days of the actual birthday, had a party clown and a cake and people leapt to their own conclusions...

So now Tom knows his birthday is impending. He's nailed the fact that today he is two, 'tomorrow I be three', 'I will blow out the candles' and 'open the tellytubby present'.

Excitement levels are high.

A response to Fintan's comment

Hi Fintan,

Here are my answers to the questions you posed in the comment on the post ‘Radio Shows that should know better’. I hope it goes some way to demonstrate that we did not pursue cochlear implantation lightly but that it wasn’t a difficult decision for us, or many other parents, to take.

Fintan's comment is in block quotes - my reply is in italics.

Hello,

Lets hear 2 sides to every story... ah well I cant join the debate.. no transcript.

You nearly lost your child through meningitis and your doing what you think is best for Tom after all you are a parent.

I would tend to wait till technology improve before implanting people .. but happily they do have guinea pigs.

The technology is progressing at an enormous rate - with his processors Tom is able to interpret the full range of speech sounds and is completely ‘peer appropriate’ in terms of his language skills. He sings, he shouts, he mimics. He has an array of 'silly voices' that he uses to make us laugh and get his own way. His voice is an incredible tool that he makes use of every minute of the waking day.

Considering the impact that meningitis can have on the cochlea in a very short time span (the fluid channels often turn to bone making implantation difficult or impossible) and the key language development phase that Tom is in, waiting was just not an option. Happily, Tom got to join the thousands of guinea pigs around the world and got to speak.

I have a few questions to ask is..

1) did you meet any implantee before Tom was fitted?

Yes, we met a number. None wanted to remove their implants.

2) were you aware risk of meningitis after having a implant?

We are only too aware of the risks of meningitis both with and without implants. We watched our son lie in a coma for four days and were told that he may not progress much further. The grand irony is that, in the UK, the vaccine that would have prevented Tom contracting the illness (and, of course, being left profoundly deaf) became part of the national vaccination program in September 2006; five months too late.

What you seem to be unaware of is that all children who are about to be implanted are given the meningitis vaccine too so any risks are vastly reduced.

3) Do you actually think that Tom will never get a job ,have family because of his Deafness?
What exactly is he missing out apart from not hearing music.

I think Tom’s deafness will have an impact on his career choices regardless of whether he had implants or not. I think having his implants and developing spoken language will greatly increase the number of choices open to him. Whether that is a comment on how prejudiced society is, I don’t know. Clearly there are injustices done but it is not my place to campaign for rights for the deaf on the back of son’s disability. I want him to have choices.

4) are you aware that you are saving tax payers money by implanting Tom and sending him to a Hearing School than having to send him or set up a Deaf school?

I am only too aware of that fact. Do I think that is the reason why children are implanted? I suspect it is one of a number of factors that contribute to the calculation of the Quality Adjusted Life Year (QALY) but is that a reason not to implant?

5) Have you asked that when going for a brain scan (for example a motorbike accident)that a implantee will give false readings...

I know that Tom can’t have an MRI without having his implants removed but I suspect that, if circumstances were so serious that such a procedure was necessary, I think we’d be worrying about far more than his implants.

Can you see why some people are against it for example... why bother getting the whole family to adjust when adjusting a implantee is the easier option.

I do understand people’s concerns and, without wishing to appear trite, I hold with the phrase ‘I disapprove of what you say, but I will defend to the death your right to say it.’.

I do, however, take issue with regard to ‘bothering getting the whole family to adjust…’. In the twelve weeks that Tom was without sound we, his parents, started learning BSL as did his grandparents who were around a great deal of the time. They were all committed to lessons and learning but the harsh reality is , for the extended family, when you are not exposed to it every day it would be very difficult to progress. This would put communication barriers up between Tom and his extended family, isolating him from them. That can’t be good.

You do your best to make it sound the poor choice but when ‘the easier option’ brings this much joy to our family I’ll opt for that every time.

Loads of research being made to *cure* Deaf people and as you can now see the research into downs syndrome where you can abort them in womb.
Can you imagine (for argument sake) that you can detect Deafness in a womb and you have the option to abort it.. As you know that any child with a disability is too much work for parents and the cost of help is prohibitive.

Sweeping statements like that don’t help any debate. Children with disabilities cannot be described as ‘too much work for parents’ and hinting at eugenics doesn’t help either. Cochlear implants are about giving people access to sound and, as a natural consequence, spoken language. They are not forced on anyone and they are not about taking something away.

So there is always a debate on who CI benefit? the implantee or the parent?

It is clearly a benefit to society as a whole – I don’t think there is really a debate there. What’s good for the parent is going to be good for the child and vice versa.

I wish Tom good luck in the future and hopefully by the time he is 16 and leave to get a job all discrimination will have ended..

I thank you for your good wishes and hope he isn’t the victim of any discrimination too.