Monday 21 March 2011

Enough about the condition – who is Uisneach?

Uisneach was born in August 2009. He arrived more than two weeks after his due date just after 9am on the morning of the 20th. He weighed just 6 lbs. He was the first grandchild on his Mams side and the first grandson on his Dads (with two older girl cousins already living in California with his Dads sister). He has since been joined by a girl cousin, born three weeks after him, to his Mams brother and a boy cousin born eight months after him to his Mams sister. A mini baby boom – and that's before we mention the birth of four second cousins all in the same year! Family gatherings have just gotten so much bigger.

He is surrounded by family. Grandparents from both sides of the family live within five minutes walk of his home and a number of aunties and uncles live not too far away either and regularly call to see him. He loves his grannies – he loves them all – but especially his grannies. They make him happy. They make him laugh.

Lots of things make him laugh actually. He has a great sense of humour and loves to involve himself in the joke – even if, as we presume, he doesn't understand it. Having said that he has an uncanny ability to laugh at just the right moment when somebody is telling a funny story. Whether it's the inclination in a persons voice – the tone – whatever – he knows when its time to join in the laughter just as the punch-line is delivered.

He likes to laugh at other things as well. Last night it was the sound of prawn cracker being crunched in his Dads mouth. That was hilarious! And had to be repeated again and again till his belly hurt from the laughter. Other times it will be an ad on the telly. In particular he finds ads for mobile phones and cable TV very funny. We think it's because he recognises the items in them. Mobile phones are one of his favourite play things. And the TV – well what could be crazier than watching TV and another TV appears on the screen. That's just the funniest thing ever. You can almost hear him say as he turns to you, “Did you see that Mam, did you see that Dad, a TV on a TV!” Apparently it's great gas altogether - for a 19 month old anyway.

And then of course he laughs at the inappropriate as well. You can feel yourself shifting a little uncomfortable in your seat when, while he's watching a particular ad, he turns to you with a little mischievous grin and then bursts out laughing. The ad is for a charity working with malnourished children in Africa! We know, it's not remotely funny.

Uisneach has never liked being on his belly. This is a bit of a draw back when it comes to the old learning to crawl. In fact his ability to flip himself from his belly on to his back from a very early age was often commented on as being quite advanced for his age. But that's where the progress ended. He was as happy as larry once he was on his back and would be quite happy to lie there for hours on end if he was allowed. When he'd go to bed at night he would be in the exact same position the following morning. Wouldn't have budged an inch. Hence the head being flat at the back.

But Uisneach's lack of mobility, mainly caused by hypotonia associated with the syndrome, really cramps his style now and he doesn't like it one bit. Not enough however to motivate him to move too much either. He wants to touch and feel everything that he sees and he needs some means of getting there or of getting the object to him. That's where we come in and he can be demanding when he wants. When he's lifted up in the morning from his bed it's a quick tug on the curtains, on the way out his bedroom door he needs to touch the letters spelling his name, the light switch in the hallway is next, the front door at the bottom of the stairs, a picture of the ocean on our right as we make our way to the kitchen, the blinds on the back door – all accompanied by that sound he makes while gesturing to objects he wants – uuh, uuh, uuh!

He doesn't have many words to communicate with – it's more sounds and gestures – making it difficult at times to understand what he wants. Frustrating for him as well as he clearly knows what he wants to communicate but just can't. Words that he is using at the moment are “Up” and “Ta Ta”. “Up” refers to both “up” and “out”. “Ta Ta” (which he pronounces “aDaa Daa”) is for “thank you” but is only used for some objects that he might receive. His main form of communication is mostly “uuh, uuh, uuh” and a gesture towards objects he wants. And once you've acknowledged the object of his desire, whether you decide to give it to him or not, he's usually happy. He's communicated.

Uisneach is a very sociable and affectionate little boy. He loves company. Nothing better than cuddling up beside you on the sofa to page back and forth through a book. We thought he had a particularly unique way of displaying his affection. When asked for a kiss or a hug he would tilt the top of his head towards you and allow you to kiss it or give him a hug. So it was interesting when we read in another blog about a child with 1p36 that they had the exact same experience. Begs the question is it nature or nurture that has the greater influence on how we behave.

We say this because another one of Uisneach's favourite things is water. He's been a demon for it from an early age. Where other parents couldn't get their children to touch the stuff he would drink loads of the stuff and would get extremely excited at the prospect of getting some. This is also something that other 1p36 parents had noticed.

And then we come to wind. Now we're not talking about farting – although he is starting to find that mildly amusing at the moment. No, we're talking about the wind blowing outside. If Uisneach had a top ten list of favourite things – wind blowing in his face would be his number 1. The excitement for him is almost unbearable – hysterical laughter, arms flapping, gasping for breadth – he absolutely loves it.

Both of these things – the wind and the water – we noticed were also commented on by other parents of children with 1p36. So again, nature or nurture??

Well, we'll sign off for now – a busy week ahead with hospital appointments. The gastroenterologist tomorrow and the optimologist later in the week and work in between.


  1. Welcome to the 1p36 group. There are many of us bloggers out there these days. When my daughter Zoe (now 4 years old) was diagnosed at birth we could not find any helpful information until we stumbled upon Whitney's blog. Suddenly the gloom of the terrible diagnosis lifted and we realized, yes- Zoe can still have a great life! As you said, we came to realize that the life we are sad about and grieve over is more about us and our hopes for Zoe. She is perfectly happy just the way she is.

    It sounds like Uisneach has some things in common with other 1p36 kids. I often think even if there was a cure, how could I ever cure Zoe when I can't tell what is Zoe and what is her 1p36 traits? All I know is in the end she is wonderful just the way she is. Sounds like you guys already know this about your son.

    Zoe too was born over two weeks late and only weighed 5 lbs 3oz. She has some major health issues from the beginning so we were lucky to get things taken care of quickly and by 2 weeks, she was already diagnosed. Zoe also loves water and has a great sense of humour. She will laugh exactly at the right moment you describe Usineach laughing at and I often wonder- did she get that? It happens too often for me to think it a coincidence. She especially loves to laugh at the misfortunes of various singers when they are singing the blues. It will come to a particularly sad part of a song and she will be chuckling her head off in the back of the car.

    There is an online group that uses email (sometimes) and facebook (mostly). The info can be helpful but a little overwhelming at times. But welcome to the group and I look forward to seeing your son progress. In case you don't know- your son is actually doing really well for a 1p36 kid. I know as parents you look at where your child "should be" but then you learn to look at the next step and celebrate all the little milestones. My Zoe hates being on her belly and still does not crawl. But she tears around the house in her walker and will run you over if you are not careful! Many of the 1p kids seem to skip crawling and go to scooting and walking instead.

    Take care,
    Genevieve- mom to Zoe http://zoes1p36blog.blogspot.com/

  2. Thanks Genevieve for the very kind and supportive words. We have found this whole 1p36 blogging community very helpful and comforting. We look forward to keeping up with Zoe's development too.