Sunday 8 May 2011

Hearing tests and Horse riding

A windy day at the harbour with new sunglasses and haircut
Uisneach is now 20 months old. We had another busy couple of weeks with various appointments for the wee lad. The last time we posted Uisneach had just gotten his glasses and they’re working out very well. Remarkably he hasn't attempted to remove them at all and in the morning seems quiet excited about getting them on.

Oddly enough he’s been babbling much more since he got them.  Perhaps you do have to see to hear.  His syllables have really come on and he seems to enjoy listening to himself. He can do baba, dada, lala and even mama now. He used to really struggle with 'm' sounds. On the down side we haven’t heard him say ‘up’ or ‘ta ta’ in weeks and they were his only words.

From everything that we’ve read about the 1p36 syndrome it seems that speech is often particularly badly affected but every child is different and we imagine it will be some time before we can fully identify Uisneach’s capacity for speech.

We have been attending a course for parents every Monday night in Enable Ireland for the last few weeks. It's called the ‘Hanen method – It takes two to talk’. It’s great for giving us ideas to promote Uisneach’s communication skills even if at this stage he just gestures or looks to an object. It's important that we help him develop the concept of communication and turn taking. 
Uisneach with favourite blue block

So we're focusing more on adding language to our morning routine by labelling his body and clothes, identifying colours (blue is his absolute favourite to the virtual exclusion of all others!). And while he has always been very cooperative in terms of getting dressed we are introducing the concept and associated word of ‘push’ing his hands through his sleeves. We’re also consciously offering him more choices like between two books or toys or his drink or food at mealtime and pausing in the middle of his favourite rhymes and songs in an effort to prompt him to communicate more and take his turn.

Another visit to Crumlin Hospital

Uisneach had his first proper audiological assessment last week in Crumlin Children’s Hospital.  We were very impressed with the audiologist’s ability to maintain Uisneach attention.  She was distracting him by slowly playing with blocks in front of him with one hand, using the other hand behind a screen to press the various frequencies and then a pedal under the table to light up a freaky looking kitten in a glass case in the top corner of the room each time Uisneach heard the sound.  She had it down to a fine art.

Uisneach’s hearing is normal at the low and high frequencies but dips a little in the middle.  However his hearing is sufficient for speech and language development.  We have to come back in 3 months because Uisneach had become a bit bored and cranky and she couldn’t finish all her tests because it needs to be conducted in complete silence. It would be preferable if he was asleep for the rest of the tests she said. How we're going to manage that is anybody's guess! And anyway Uisneach's snoring while asleep certainly doesn't constititue complete silence.

On the physical side of things Uisneach is making some progress in that he can bear his weight on his legs for longer periods if we pull him up to stand.  We have the loan of a Stander from Enable until we get our own and he's been standing in this for periods each day.  It's hard to figure out ways to entertain him in it. The sweeping brush has been a useful distraction as has the washing machine – not exactly educational we know but hey you go with what works. We also got him a sand and water table for the back yard to go with our unseasonably warm sunny weather.  He loves the water side but not so much the sand since he discovered it doesn’t taste nice. We can still hear him grinding the sand in his teeth – one of the most unpleasant sounds to come across.

Playing with new sand and water table - Sand doesn't taste nice!

Horse Riding for theraphy

It had been suggested to us before by his physio and occupational therapists that horse riding might be helpful to Uisneach in terms of increasing his mobility – specifically around his pelvis. However, with everything else that was going on – appointments etc – we just never found the time to follow up on it. That changed two weeks ago when we found a horse-riding centre close to where we live that specialises in dealing with children with special needs. We were very impressed with the The Festina Lente (Hasten Slowly) centre in Bray.

We're not sure that Uisneach really comprehends animals – understands that they are other living beings. He doesn't seem to pay any particular attention to them. Not like he does with other people. In fact at the riding centre he seemed far more interested in the little colourful buckets that acted as markers in the arena than in the horse.

That didn't put him off the horse-riding though. He took to it like a duck to water. With a little support from his Dad and his uncle Dave and the staff of Festina Lente he managed to stay on the horse for 25 minutes without a bother. He seemed to really like the motion and the new environment and of course the attention he was getting while on the horse. He likes attention.

We're going to check back in with his physio and if they recommend it we're going to book him in for a course.


  1. Uisneach is so handsome. My son Aiden ( 3 1/2 years old ). Has 1p36 Deletion Syndrome. Check out www.1p36dsa.org for more information on 1p36 Deletion Syndrome.

  2. Hi KB. Thanks for your message. I don't know where I'd be without the internet! I've seen your blog too, looks like Aiden loves water as much as Uisneach! Miriam

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