low muscle tone

Walk the walk

~ Vickywoo ~ 3 Comments

As you’ll have seen, I post a lot of positive stories about Audrey. It’s hard not to. But I want to be honest about something I am finding difficult; the fact that she can’t walk.

When she was born, one of the many things we were prepped for was the difference in when a typical child walks and when a child with DS does, I was pretty confident Audrey wouldn’t be too far behind her peers. I expected she’d be up and running around 2.

Well, we’ve passed her third birthday now and she hasn’t nailed it yet and let me tell you why that sucks…

I feel like she has lost out on a period of her childhood; outdoor activities, soft play, dancing, exploring and running after friends. I know this will come, but her friends have had this kind of childhood since they were 12? 14? 16? 18? months (I’m not even 100% sure when!).

In many ways she’s an easier child for me as a non-walker (less so now we have Rex), although I don’t want her to walk to help me out. I feel like she is being robbed of a typical childhood. It makes her officially “different”. Yes I know she is different, but at this age, kids are just kids. They play with each other at mixed ages and mixed abilities, but not being able walk puts her way behind.

My husband is a bit more laid back about it and I wish I could feel the same. Ultimately I do have to be patient, I can’t let frustration take over because that’s not going to help, but her almost 6 month old brother is rolling and pivoting and getting into things… he will be crawling soon and before we know it – walking too. It seems so crazy how quickly he is getting there and how slowly Audrey is.

But, hey, as I’ve said before, it is best to focus on what your child can do, rather than what they can’t and Audrey’s communication skills have excelled beyond our expectations. She sings so many songs (from Old Macdonald to Queen’s We Are the Champions!), she “reads” so many books and she is really polite – she even says “Thank you Rex” when she has given him a toy. She’s fabulous.

I guess I’ll have to wait for the running and jumping… I’m sure once it comes I’ll be so tired out by her (and Rex), I’ll be wishing for the bum-shuffling days? We shall see.

Here she is working hard at conductive education:



 

 

Here Comes Audrey… Marching Along

~ Vickywoo ~ Leave a comment

Audrey has successfully walked on her own with a walker (both a standard plastic thing at home and a fancy rollater at conductive education)!

Yes, I cut straight to the juicy detail there.  It feels so exciting and terrifying to think she might be close to walking. 

When Audrey was a baby, I looked at the parameters for children with DS walking (from typical age to 5 the book said) and I thought; “well she will walk at typical age or not much later”, because I wanted to be positive, but also I believed in Audrey. I knew she was the greatest kid with Down’s Syndrome I’d ever known, I was so sure that with lots of help she could hit all those milestones as early as possible.

The reality is, even if we had been super hot on physio and/or lots of crazy gadgets for walking/improving muscle tone, Audrey would still be delayed. She has low muscle tone that is hard to deny. Plus she chose to bottom shuffle rather than crawl – this is practically walking, she has her hands free. So in her eyes, no rush!

As I look at this year, the year she will possibly walk independently, I feel a mixture of emotions. I’ve been so desperate to see her run around like her peers. She misses out on park time, outdoor play and even soft play (you need to be able to climb). However I’m worried about how it will change things – eyes needed in the back of my head? A child that’s no longer happy in the buggy or sitting in a high chair? I know this is standard progression and something mums of typical children have dealt with already by 14 months (is that the average walking age??), but Audrey is 3 in July and I still haven’t had to worry about these things. 

She is just starting to realise that Rex is taking up mummy time, she is calling out for me a lot, following me around and is trickier to get settled at night time. Audrey is really growing up. I love being her number 1, but it’s so hard when I can’t devote all my time to her. I hope her improvement in walking, standing and climbing will help give her some independence and help her to need me less, although I suspect I’m in for many months of struggling with how to split my time between demand breastfed baby and demanding toddler!