I can’t believe our little boy is 18 months old! Time flies when you’re having fun!
We have now moved to the Gold Coast, Queensland and so far have loved every minute. We decided to hire a car and drive from Sydney to the Gold Coast (about a 15 hour drive) and stop off at Coffs Harbour (about half way!) for two nights to visit with my best friend from Uni. She has 3 boys of her own and Kyan loved watching them all play and run around.
Kyan was very good in the car on the way up – hardly whinged at all! I guess we have the Ipad to thank for that! It was Mr Tumble all the way from Sydney to QLD, but that was better than crying and constant whinging.
So now that we are here we are trying to establish some routines and get Kyan’s support systems back in place. We are living with friends at the moment and their little girl is 2 weeks younger than Kyan so it has been great watching their friendship develop (and Kyan hopefully will copy what she is doing).
He has been waking up at 5am since we got here (he is up with the sun!) BUT he has dropped 2 of his sleeps and now just has a big sleep in the middle of the day – and sometimes a short nap in the afternoon if he needs it. He goes to bed at about 7:30pm so we are happy with that!
He is still eating really well and has become a huge fan of blueberries, mangoes and grapes. The fruit is working wonders for his digestive system too. We have stopped feeding him wheat-a-bix for now and limiting his bread intake as we think there may be some sort of intolerance there. He still loves his food and eating is not a problem at all. Trying to get him to eat independently however, is another story. He use to hold a spoon now and again but at the moment he refuses to hold anything. He will use his hands to eat, but his latest trick is dropping his food over the side of the high chair…
We have joined a special needs playgroup on Friday mornings. Kyan loves it! They do musical therapy each week and he really loves listening to the music and joining in. There is another little girl with Downs who attends and she is 1 month older than Kyan so it’s great that he has another friend already. I think guitars are his new favourite thing. He has to sit right in front of the teacher when she plays and likes to help her strum when it is his turn.
We also got Kyan into swimming lessons as soon as we moved up here, in the hope it would improve his muscle tone (and there is no harm in being able to swim!). He loves the water and did so well in his first lesson. He has his lazy days but generally is doing really well. He keeps drinking the water which is a little annoying but at least he isn’t scared. It just so happens that his swimming teacher signs so that is handy! Although signs in the UK are different to signs in Australia…..
Kyan just keeps showing us more and more signs and it is great! We are also teaching Emi (the little girl we live with) and she has already picked up quite a few! The only problem is that some signs are different here. We are going to keep what he knows and then start learning ‘Auslan’. So far he does; milk, food, drink, more, yum, tired/sleep, monkey, giraffe, bath, up and sometimes ‘finished’. He also touches his chest for ‘me’ and then points if he wants to go somewhere. He also has his own version of ‘Mr Tumble’ – he usually does this then points to the TV. We are quite pleased with his communication and pretty much know what he wants. He also knows; teeth, mouth, nose, ears, head and hair. Although he doesn’t always get them right!
Kyan still isn’t moving independently but we aren’t too worried. He is now able to walk holding on to only one of our hands – he is still a little wobbly, but if he wants something, or if he is carrying something then he can do it. Kyan still won’t bend his knees and collapse down if he is falling so he really freaks out when he goes to fall. We are currently trying to teach him to sit as he falls.
We haven’t had any physio, speech therapy, OT etc yet. We have a GP now and have registered with the Disability services so know we are just waiting for things to get organised. Nothing like sitting around and waiting! I think if Kyan had still been having physio these last two months then we would be a lot further along. Oh well. We will get there…
Other than that we have just been enjoying the weather (when it’s sunny!). It has rained so much the last 3 weeks but we got some sun the other day and took off to the Rockpools (a splash park). Kyan loved playing in the water and once again we watched him just sitting there, wishing he was able to walk around like the other kids. He still has fun though, and it doesn’t stop him using us as his ‘walkers’. The lifeguard on duty just happened to have his guitar with him so Kyan made a beeline for that! Think we have a future musician on our hands!