Saturday, 8 March 2014

Counting 1, 2 ,3

Felix with the chooks
At the beginning of our 'Down syndrome' journey, the unknown was a bit daunting. Felix's diagnosis in itself didn't bother me, but I often got ahead of myself and worried about him being teased at school, or where he was going to live and work when he was older. I also had preconceived ideas that parenting Felix was going to be completely different from parenting our other kids. I expected his development to be slow; really slow. Due to his dual diagnosis of Down syndrome and Hydrocephalus/Ventriculomegaly, there was talk of surgeries, a shunt in his brain, wheelchairs and complete and utter dependence on us for all of his basic needs. There was also talk of death. "Prepare yourselves, because this is NOT going to end happily" was what we were told by the Obstetrician.

No hands!
Fast forward 3 1/2 years. Tonight, Felix fed himself his dinner which he promptly ate up and then signed and spoke the word "more". After his second helping, he put his plate on the cupboard and signed "bath". He's had a long day horse riding at Riding for the Disabled, and then playing with the chickens at home and collecting the eggs, so he was ready to get clean. We went into the bathroom and I started running the water. Felix got his liquid bath soap out of the cupboard, squeezed some in the water and then put it back neatly in the cupboard. He managed to get his jeans off nearly the whole way by himself, and then I helped him with his shirt. Once he was in the bath he signed for his toy fish and motioned to the other toys he wanted to play with. I told him the body parts he needed to wash and he correctly identified all of them and washed them. This is the little boy I had previously had so many concerns about.... he has completely squashed all the worries I had about his development. Yes, he learns things more slowly, but certainly not as slowly as I had thought. His mind and body are constantly active, wanting to learn and do new things. He is full of life and I have learnt to live in the NOW and not get ahead of myself!

The most exciting moment of Felix's development, over the last month, was when I realised he could recognise every number from one to ten, even out of order. Equally exciting was the fact that he could speak (not sign) each of those numbers as well! One (uh), two (oo), three (ee), four (pour), five (pibe), six (ks), seven (un), eight (ayt), nine (noin), ten (den...always shouted for effect!). Over the past few weeks the words are becoming clearer and clearer. His favourite game, at the moment, is for us to write random numbers on a piece of paper and for him to say them. He gets them right 100% of the time. We can't even trick him with a 6 and a 9!! We've always spent a lot of time counting things with Felix, but have never actually pointed to the numbers. We're guessing he has learnt to recognise them from the counting apps he has on his ipad. I have put up some beautiful, bright number posters in his room since realising his love for numbers. We often wake up to a little voice, through the wall, counting very loudly in his room!

The funniest moment of the last month happened in the chicken coop. Felix was copying the chickens, bobbing his head up and down and scratching the ground with his foot. He looked hilarious! Even funnier was when he watched the chooks pecking the ground. Before I could stop him, he had bent over and pecked the ground with his mouth...what's good for the chickens must be good enough for him, right? His face said it all; he promptly stood back up with his tongue out, covered in dirt! He didn't look very impressed. I'm guessing he'll leave the pellets to the chooks next time!! Hahaha!
Story time for sock cat

We have recently started some more regular speech therapy with Felix. We have found an amazing therapist who Felix responds to really well. She said that Felix is consistantly using sounds for certain things, showing a good indication that his speech is coming along really well. He is starting to mimic a lot more sounds and copy simple sounds we make. The great thing about his therapist is that she corrects things that we, as parents, are doing and shows us different ways to encourage communication from Felix. Not that what we're doing is necessarily wrong, but it may not be as helpful as doing it a different way. It's amazing the little things we do or say, without even realising it. Having a third party watch how we interact with Felix
is really helpful.
Dressed up in Daddy's boots

Hydrotherapy is going really well. In fact, Felix is so relaxed in the water now that he sometimes likes to
just lay on his back and float. Last week I thought he was going to go to sleep! His kicking is coming along
slowly but surely. He will often only kick one leg at a time (while holding his thigh with one hand) but hasn't quite got a grasp on alternating his legs yet. He is amazing at balancing on a foam board in the water and is able to stand for a while, unaided, without falling over. I'm so proud of the way he follows instructions and nearly always does what his therapist asks him to do. On days when he is in 'a mood', he will try to do his own thing but, with some encouragement, usually gets back to what he's meant to be doing. He's a bit stubborn sometimes!

Medically, we are happy to report that Felix won't be needing hernia surgery. We have recently seen the surgeon and he is confident the bulge in Felix's groin is not a hernia, which is great! We also saw the Ear, Nose and Throat specialist and Felix's xray has shown that his adenoids are really enlarged. He will be having surgery in the next few months to remove his adenoids, tonsils, and to replace the tubes in his ears if necessary. His ears build up such huge amounts of wax, it's almost impossible for the ENT to see in his ears clearly, so they will give them a good clean out while he's under anaesthetic as well. We have noticed, recently, that Felix has short periods of apnoea when he sleeps. He stops breathing every so often, and then starts up again. He has also been snoring. We're hoping the surgery will correct both the snoring and the apnoea.
Lub oo Mum, even when I'm grumpy!

Tonight, as I tucked our little man into bed, I was once again overcome with wonder at our little miracle. Hearing him say, "Lub oo Mum" and signing 'Love you' when I say goodnight melts me every time.