Uisneach is our son. In February 2011, at 18 months of age, he was diagnosed with having a genetic disorder called 1p36 micro-deletion syndrome. This is our blog charting the ups and downs of raising a child with developmental delay.
Uisneach
Tuesday 17 January 2012
Tuesday 3 January 2012
After Santa and preparing for a new year
Christmas 2011 was Uisneach's third Christmas but it will go down as the Christmas when Uisneach first appeared to get a sense that there is something different and special about this time of year. Not only does he now recognise Santa, and has even managed to create his own sign language to describe him – pointing to his chin for a beard and to his head for a hat, but he also seemed to get the notion of giving and receiving gifts. He certainly liked the idea of opening them anyway! Weeks of preparation helped. Photos of Santa. Pre-Christmas visits to a number of places where Santa and his helpers were hanging out prior to the big day. A countdown using a Mr. Men Christmas calendar – opening a door and consuming a small chocolate every day until the 25th. And of course his Mam doing all in her power to create a sense of excitement throughout the whole month of December. Even his Dad managed to get over the initial grumbles he had when this Christmas process started in November.
Uisneach's grandparents, his aunties
and uncles on both sides and his little cousins all visited on
Christmas Eve. Uisneach was very happy to see them all and didn't
seem to mind all the noise and confusion that accompanies large
family gatherings. Once Uisneach is there first he seems secure and
safe. He doesn't like being surprised by lots of people in his
house. He tends to cry a bit if he wakes from a nap to find them
crowding his space. We'd learnt that lesson at his birthday party.
The adults all sampled a bit of mulled
wine and had some nibbles. The little ones consumed large quantities
of cocktail sausages and cookies – sometimes separate - sometimes
in the same mouthful!
That went on for a few hours before
people decided to make their way home to their respective houses. It
was quiet time then as we prepared for the arrival of the main man
himself.
Christmas morning Uisneach didn't wake
too early so his Mam and Dad were pleased with that. We went down
for breakfast together and sitting on Uisneach's table was a photo of
Santa delivering presents in our sitting room. Imagine that!
Apparently he left it as evidence of his visit. A very patient or
unimpressed Uisneach finished off his porridge before we went in to
see what Santa left.
There waiting for him were a little
ladybird (or ladybug depending on what part of the world your from)
push along trike i.e. without pedals, a large bag of building blocks,
a play kitchen and some books. Santa obviously put a bit of thought
into the presents this year in the hope of maximising Uisneach's
developmental potential. The trike, it is hoped, will not only help
him with his balance but might even motivate him to start using his
legs to move forward. The blocks – which are much bigger and
easier to take apart than Lego – are aimed at help him with some of
his fine motor and planning skills. The kitchen unit is primarily
about encouraging him to remain standing for longer periods to build
up strenght in his legs. The books – well he just loves books –
and following a story is as good a skill as any to learn and develop.
A non Santa gift that was also on offer on Christmas morning was a
remote control car from a family friend.
He had a quick go on his ladybird trike before promptly falling off. You can't take your eye off them for a second! So that was set aside for a while until he got over the shock of his little tumble. There were a few tears but a quick recovery due to all the other distractions going on. The blocks proved by far the most popular present but not for their intended purpose. Instead Uisneach really enjoyed having the blocks emptied out over him as he was sitting down. He loves when there are loads of anything and here there were a hundred blocks raining down on his lower body. He was in heaven. Laughing his head off! Next his Mam gave him a quick introduction to the remote control car – with a simple three button control - to see if he would understand the cause and effect of pressing buttons on one thing and making another object react. He took to it straight away. His Mam and Dad shouldn't have been too surprised though as he's constantly interfering with the remote control for the television and knows that randomly pressing the button on the TV remote control will eventually do something to the television.
Playing with cousin Tom at Mamós on Christmas Day |
We're no psychologists but what has
been an eyeopener for Uisneach's Mam and Dad is that in the first
instance he is expressing a clear empathy with others, even if at
this stage its only with a character in a story, and secondly that it
appears that he has been following the stories correctly all along
even if that hasn't always been clear to us. It's been a revelation
– a welcome revelation we think although it will be interesting to
see what the professionals have to say about it.
It has been while watching Magic Baby
Jake that Uisneach has also come along developmentally in another
area as well. We have been without his stander since before
Christmas as it has been away getting fixed after a piece broke. In
the meantime we have been trying to get Uisneach to do as much free
standing as he can tolerate and our time allows. Baby Jake has
provided us with the perfect distraction. Each episode is about 10
minutes long. And Uisneach has been willing to watch two episodes in
a row where he will stand only supported by holding on to either his
Mam or Dads hand. The legs usually get a bit wobbly after about two
episodes. If he wants to watch any more he has to do it on his tummy
or knees so that he has to lift up his upper body to see the TV.
Watching Magic Baby Jake has effectively become part of his daily
exercise routine and he doesn't even seem to notice how hard he's
working.
Taking his first Roller Coaster ride with Mam |
With Dad on the Teacup ride |
A swing in the park the day after Christmas |
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