DSAV Conference

We spent the weekend in Beechworth at the Victorian Down Syndrome Association Family Conference. All was good. I was a bit slack in attending all of the conference sessions, but I enjoyed the socialising aspect, and getting out of town. Hubby got a lot out of the sessions, especially early reading and learning maths. Sheena liked the creche for the kids. She impressed them with her bum shuffling prowess. She impressed me in not sobbing while we left her there, as she's not fond of good byes at the moment, but hopefully that is a passing phase.

Here she is doing one of her happy baby dances.

Cruise Control

I was reading recent posts, and realised that its only been 3 weeks since Sheena learnt to get into standing on her own. She now cruises around the furniture, and stands up like she's been doing it for months. Hubby even found her at full stretch holding onto the edge of the big table for sheer life. We can only assume that she navigated her way there via a chair, but from where we were it didn't look easy.

Sheena has succumbed to conjunctivitis. She often gets watery eyes, that resolves itself within a few hours, as she's got a blocked tear duct that causes that from time to time, but this was something different. She is now on antibiotic eye drops, which should quickly do the trick.

We've been thinking about speech lately, and we're not having a lot of progress on that front. She will repeat things like coo-wee, or ohhh-dear, nana, dada, doe-doe, but that is about it. Her 'ta', is not consistent, and if she does it, it comes out as 'agh'. We were thinking how different life would be if she did chat away. Speech apraxia can be a factor both with Down Syndrome and Infantile Spasms. Its a speech disorder that interferes with a child's ability to correctly pronounce sounds, syllables and words. It is the loss of ability to consistently position the articulators (face, tongue, lips, jaw) for the production of speech sounds and for sequencing those sounds into syllables or words. The child does not have difficulty with non-speech activities performed with the muscles such as coughing, chewing or swallowing. However, the area of the brain that tells the muscles how to move and what to do make a particular sound or series of sounds is damaged or not fully developed. This make retrieving the 'motor plan' for saying a work difficult. We shall see. To me, it seems consistent with her so far.

Dressed for Success

Here is Sheena ready to go to Playgroup. She now genuinely fits into the cardigan that her Granny made for her.

Her signing vocubulary is rocketing ahead. She now has picked up cat, pig, yes (although yes is over enthusiastic, and both arms go at once), dad, toilet, car - as well as all the others she was doing already. It is fun teaching her, as she's so into it.

She is also starting to stack blocks, which means that her releasing is improving.

So there we are for the weekly Sheena update. She is still the healthy one of the house, while I'm still sick with this virus.

Squishy Sheena

Sheena was the healthy one of the house this week, as hubby and I struggled through a nasty virus. We didn't even have the energy to take her for a walk around the block, but Sheena was quite happy to cruise around the living room while we flaked in front of the TV.

She has discovered the Wiggles. We have the one that has Auslan sign language in the corner, so I watch it sometimes to learn more signs.

When I am washing Sheena's hair, I always get her to put her own shampoo in, and I say "squishy,squishy, squishy" when I squeeze the shampoo into her hand. She holds her hand out and then squishes it into her hand before putting it in her hair. Now its getting hotter, I found myself saying the same thing when I put sunscreen on her, and she squished her hand in the same way. It was a nice little incidental learning, showing me once again that she is very tuned-in.

A year until we walk.

We had to go to the GP today to get a referral (for the Pead that we saw last week - go figure). While there, Sheena was bum shuffling the room, and putting on the charm. Another mum of a 9 month old asked how old she was and when I said 21 months, she said, "Oh - a late walker, you're lucky, my first started at 11 months".

When Sheena saw her Peadiatrition last week, he guessed/assessed that it'll probably be another year before she walks. I'd guessed the same, given that she's quite tentative with her gross motor, and she carefully calculates every situation before taking a risk - like lurching off her rocking horse, which she's started to do.

Occassionally people ask when do kids with DS start walking. In a way, it is like with most kids, in that there is a range, but with the DS, it tends to start at the later age, and then the range from that is a lot bigger. Factors come in too of course, general disposition i.e. whether the child is motor driven or an observer, medical history (operations, illnesses, medication, hospital stays), male vs female, if the child has low tone which is quite common with DS, whether the parents themselves were early walkers, and the amount of encouragement/stimulation the child has to get going.

Sometimes Doc's come out with things that take you off guard. I didn't mind the walking comment as it was consisent with what I'd thought anyway. However, when she was 16 months or so, her Neurologist said that she was X months delayed from a typically developing child. I don't personally think of her like that, I just take her as she comes.

Standing Up by Myself

Here is Sheena showing off how flexible she is. She's effortless in that way

I had to post this video of Sheena getting up into Standing. It is an almighty effort. http://www.youtube.com/watch?v=ZSFnqjHchWE She did it for the first time yesterday :) She is now trying to do it everywhere. I'd only said to her physiotherapist on Tuesday that I was pretty relaxed about her achieving it, because I knew she would.

Sheena had an appointment with her Peadiatrition today. She is going along marvelously. He said she is one of the few people that have a decent life after hypsarrythmia - only 10% do from the rare form of epilepsy.

Sheena had a blood test straight after the appt for a routine Thyroid Function test (which has to be closely monitored in people with DS), along with an FBE while we were at it. She didn't cry!!! (but did give them a lot of cross expressions). What a little champion. As soon as I went into the Pathology Collection room, I went into bat for Sheena and said that she needed a very, very, very experienced person to take bloods. It has been a disaster every other time, so I am glad it isn't always going to be the case. We find out on Tuesday if the Thyroid is OK.

Releasing Now

Aunty Christy and cousin Mark have been down to visit, and Sheena has enjoyed the extra company.

She picked up a really bad cold. She is better today after a dreadful night. I even called 'Nurse on Call', which is a govt initiative to reduce the number of people visiting doctors. She'd had 4 doses of panadol within 14 hours, and that is well and truely the limit, so I wanted to know what to do when we came to the next fever, and crying episode. The advise was to use Nurofen if she got a fever again overnight, as it is apparently less harmful on the kidneys, so we gave her 2 more doses of that at 10pm and then at 2am when she woke up sick and miserable. She woke up happy and much better.

Our big developmental thing of the week, is that Sheena is now releasing objects. She was placing bath toys on the edge of the bath, and she's been placing balls into her gumball machine.

On a mission

Sheena is very funny in the sandpit at the moment. She gets in with it full of plastic balls and sand. She gets on a mission, and is not satisfied until every ball has been thrown into the garden ready for mum to pick up so that she can start the whole process again.

Today we went to quasi-Wiggles gig at the local shopping centre with the Mother's group. Wag the dog was there. Sheena loved it, and had a bit of a wiggle, and lots of clapping.

Her standing has progressed to assisted walking where I can hold her hands above her head while she takes steps. She's not cruising the furniture quite yet, and can't get into standing by herself, but you can see the pattern getting more fine-tuned each day.

Kidding Sheena

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.

Perspectives

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.

Fancy Feet

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.

Sheena the Socialite

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.

The Birds are Back

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.

A Dad's Perspective for Father's Day

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."

A Fairy in the Garden

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.

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Pigtails for Gabi

Gabi, and her trade-mark pigtails didn't make it through, and these Pigtails from when Sheena was 13 months are in memory of her.

Springing into Spring

Although its still August, we've had some early spring weather that is going to last for a few more days. Its nice not to have to rug Sheena up in so many layers, and have some more outdoor play.

She had a grisly week with a head cold, and missed creche a couple of weeks ago, but she recovered from that on Tuesday ready for Play Group, then a normal week this week.

The head-cold was tiresome. She actually slept quite a lot, but was not much fun to be around when she was awake. Grizzle, wine, grizzle. She could turn on the grumpiest face, and then she decided it was cool, so did it whether she was cross or not. I took her to the Dr's twice, because she was not at all happy, but it was just a nasty cold that she had to ride through.

However, the turn-around is very easy to take, and she has been great fun the last couple of days. Our friends and their 2 kiddies are visiting Melbourne, so we caught up with them in St Kilda. Sheena was in such good form at the restaurant. She was delighted to be passed around, sit in the high chair, then bum-shuffle around the floor for a while. We're finally moving out of that awkward big-baby stage, where she wasn't very strong, and wasn't mobile, to the stage where she is into everything, and getting around as much as possible.

A dream

Sheena is usually a dream to put to bed. Pop her in, a small happy baby dance, then she'll lie on her side, and contentedly pop off to sleep. If she resists in anyway to rolling on her side, I know I have put her down to early. Recently she's taken to squealing as I walk out the door, but I ignore that, and it rarely lasts.

However..., now that Sheena has been getting into sitting by herself for over a week, she has some other options to add, and today I went back in, she was sitting in the middle of her cot. It is so odd for me to see her in all these different possies after so long. Resettling her from now on in going to be quite different I am sure.

Surfing Sheena

Sheena has been tracking along very well, and my sister has told me off for not writing in Sheena Time to boast about her recent efforts.

So, we are now getting ourselves into sitting, and using a sippee cup. Her standing is getting better too, and there are heaps of other subtle developmental things that she has come on with.

Physically, I can now hold onto her hands while she is standing without it seeming like her arms are going to fall out of their sockets. This is really new, and I have no idea how this has all of a sudden changed, but we previously had heaps of problems with pulling to sit because of her lax joints, but this doesn't seem to be as much of an issue with her arms anymore.

I recently bought her a scooter-board to encourage the crawling movement, but I haven't really worked out how to best replicate the pattern, so in the meantime, Sheena looks like she is surfing while I drag her around the lounge room.

Determined

Sheena has learnt how to push herself up into sitting from rolling to the side then up. She uses her arm to push up, and it is very much like the manoever the physio got us to use whenever we picked her up to encourage the pattern. Its good that she's using her arm to do it, as it will help develop her shoulders and arms which are pretty weak from lack of crawling.

She can be quite determined and patient when she is trying to sort something out. Tonight she was in the bath, standing up at the edge banging at a toy boat. After throwing it away, I replaced it with a rubber toy that was much harder to grasp. She was awfully determined to get a hold of it, all while she was standing on her wobble-board legs.