Friday, September 28, 2007
Here is Sheena having fun with some other kids. Sheena's idea of gentle is not exactly predicable, so I was holding her hands for everyone's sake.
Sheena had a great speech pathology appointment, and she's got a few more activities to help her lip seal and ultimately her speech. I thought that the lip seal activities in particular would be a tediously long haul, with very slow results, but we're told it will be 6wks to 6mths, and we'll should see significantly more control. Fortunately Sheena is enjoying the activities, particularly all those that involve looking in the mirror, and all that involve someone singing songs to her. She is definitely babbling considerably more, with more variation, and this is only after 3 days of doing the activities 3 times a day. The lip seal issue is because of her low muscle tone. With delays in trunk control, jaw control is also delayed. This, along with a high arch in her mouth, all make the lip seal more of a challenge.
Sheena is loving her books, and has recently started to consistently turn the page herself. This took her ages to achieve, so it is a nice one.
She had a hearing test today, and got an 'A' as a result. She was very dramatic when she turned to look at the noise - a soap opera performance.
My computer has not been co-operative lately, so I have not posted much lately.
Tuesday, September 18, 2007
It was the last of Sheena's EI playgroup for the term. One of her friends at playgroup has just been diagnosed with Retts Syndrome. It is a complex condition that I'd read about while scanning over all the various genetic conditions when I read up on DS. It was helpful to know the basics about it when I spoke to her mum.
One of Sheena's other friends at Playgroup is scheduled to go into hospital for major surgery over the school holidays. The particular surgery is not usually done until kids are 5, but the Doctors now consider it appropriate for a 2 y/o. Naturally, it is a daunting time for her parents.
After hearing all this news, I went to work. I'm enjoying work, but nothing seemed stressful after playgroup.
Sunday, September 16, 2007
We've been shoe shopping. I've had Sheena in soft booties all winter, but one of Sheena's friends that is 2 and cruising very well, but not quite walking, benefited from having some more stability by wearing shoes.
However, when we hit the shops all the sales people said that you shouldn't wear proper shoes until you've been walking for 6-8 weeks. Anyway, Sheena has petite feet, and she only fits into shoes that are designed for pre-walkers, so that is what I came away with. One of the criteria was that they were easy to put on. Her feet are very soft, and don't have resistance to push against like you usually would when you're putting on a shoe. They're great, and she's not trying to take them off - thankfully, because they were pricey little pink numbers.
Sheena is signing so well. People often ask if she's talking, so it is nice to be able to say, "Not much, but she does sign language". Never fails to impress. She signs dog, book, more, food, eat, drink. She looks like she is trying to work out biscuit, but hasn't done it yet. I can tell by her expression that she is concentrating to learn it. Dog is the odd one out. The others are in her life daily - but she has only encountered dogs occassionally, so she's learnt that purely from books.
Monday, September 10, 2007
Sheena has had a great few days as we had friends stay with us. She was very content to play wih their 3 y/o and 14 mth old. Here is Sheena and B having a race in the lounge room. You can see that B was introducing tactics outside the rules of racing. You can equally see that Sheena was distracted by the camera and needed to beam accordingly.
Our biggest news for Sheena is that she is making huge progress with eating from her bowl with a spoon. We'd been having a few dramas with that, but now she needs assistance with a few of the steps,.... and a big bib.
Monday, September 03, 2007
The Kookaburra's are back. It even gave us a laugh this time. For all the non-Aussies that read this blog, Kookaburras make a great laughing noise that is really distinctive. I was cooking a quiche at the time, so I suspect the smell might have attracted it. It hung around for ages, which was exciting.
Sheena is really close to pulling to stand. She is now a lot more confident on her feet when standing against something, and will step to each side with a bit of support and encouragement.
Sunday, September 02, 2007
A+ for enthusiasm Sheena.
This is a much longer post that usual for me, but I got a transcript of the radio piece by a Father from Sheena's Hey Dad Playgroup. Here 'tis:
"I'm looking forward to Father's Day. We didn't really celebrate it in my home-country when I was a kid, so it's still a bit of a novelty for me. It's not really about me of course, but it's a nice to give my kids a special occasion to feel good about their family.
From my eldest daughter, C*, I'm expecting a big hug, maybe a new painting she has made for me at kinder and, if I'm really lucky, she might help her Mum make breakfast in bed.
From my youngest daughter, S*, I'm not sure what to expect. I am used to that with S* now though, so I'll be glad for whatever I get. You see, S* has been diagnosed with "developmental delay", and despite being three years old, doesn't really understand what Father's Day is.
It's a voyage of discovery with S*.. She doesn't have an exact condition like Down Syndrome or anything like that, so we just never know what to expect from her next. In many ways she's just like any other girl her age: she's got a cheeky smile, she's an expert at hide and seek and she just loves taking the mickey out of her dad.
In fact, she's so like any other girls that it took us a while to notice that there was something different about S*. She just seemed a little late to make some of the achievements we'd seen C* make. She was slow to put weight on her legs and to learn to walk.
We were hoping that she'd start speaking by her third birthday, but that's come and gone now. Still, she's getting very close to "YES" and "OK" and she always finds a way to get her point across. She may never talk fluently, but that's something we'll cope with as we go along.
The fact that we can't know which milestones S* will pass and which ones will always be out of her reach can make things a little tough - especially for a dad. While I'm at work, my wife takes S* to all her medical appointments and talks to experts about what might be coming next.
I try to remain as involved as possible in these aspects, but sometimes I feel that I'm missing out on a lot of S*'s development. We're trying to teach her sign language at the moment and it's always a bit of a shock when I realise that my four year old daughter, C*, is much more proficient that I am.
That is why I'm really glad to part of "Hey Dad" group at Yooralla's Early Childhood Intervention Services. It's a group, designed for that dads of kids like S* to give us a chance to spend a little time with our kids, see what they're up to in playgroup and meet other dads just like us.
There I spend a bit of time with S*, doing the kind of things she normally does at her playgroup. We do a painting together, mould some play dough, play with a few toys. It doesn't sound like much but it keeps me in touch with what my beautiful daughter is up to and helps me learn how to reinforce at home what she learns in her weekly programme.
I talk to other dads, sometimes about our kids, sometimes about sport. I can see what their kids are up to and how they're growing. It's normal, its just a different kind of normal.
That's what I love about Yooralla. They don't just look after S*; they make sure the whole family unit is involved in everything. When S* was first diagnosed, it was hard for all of us. Yooralla staff took time to talk to us through what was happening and helped prepare us for dealing with how to cope when you don't know what to expect.
And most of the time, life's actually pretty good. S* is the undisputed champion of indoor soccer and loves wrestling with her sister and dad. When she laughs at something, you have to repeat it at least five times. She's not a bad dance partner either and she's clever enough to ignore Dad when it's time to be serious.
Sure, it can be tough at times. But we live in hope, we aim high and we deal with reality as it comes.
Yeah, I'm looking forward to Father's Day. Even more though, I'm looking forward to Father's Day next year. I don't know for sure, but I like to believe that by then my youngest daughter will understand what Father's Day is."
Saturday, September 01, 2007
This morning, Sheena Pops had a Hey Dad Playgroup. Its Fathers Day tomorrow, so the Dad's had a BBQ, while the kids played outside. One of the other Dad's that go did a pre-recorded radio segment that we listened to at lunchtime today. He talked about his 2 daughters, only three and four, the younger of which has developmental delays - but with no medical diagnosis as to why. He talked about how she doesn't yet understand what Father's Day is, but that she is full of surprises - so you never know. Three seems quite young regardless. He was very complimentary of the Yooralla program - especially how they include the whole family with things like Saturday Hey Dad and various Sibling Programs.
After a nap, Sheena helped do some gardening in the front yard, and she had a great day all-up.