Bragging

I wanted to list some stuff Audrey can do, I’m not really bragging, just want to remember how well she’s doing and have an excuse to document small things we may forget.

Don’t get me wrong either, I am fully aware typical children can do all these things and much, much more and that other kids with DS might be ahead of us too, but I am super proud of every little thing Audrey has achieved. The bar was set low when we realised she had Down Syndrome (sad but true), but those low expectations mean BIG celebrations when she achieves. We are a family of clappers and cheerers!

Ok, so signs-wise Audrey knows loads, but these are words she also says whilst signing:

Dada (putting this at the top as it is her most successful word-sign combo!)

Mama 

Banana (narna)

More

Cake (don’t judge! She has rice cakes and pancakes a lot, so associates the word with those things as well as the odd nibble of Mummy’s lemon drizzle!)

Audrey can sign (without saying):

Bibi (Grandma)

Finished

Food

Blueberries

Yoghurt

Milk

Biscuit

Water/drink

Nappy

Where

Cuddle

Hello and goodbye

Baby

Bird

Dog

Flower

Bus

Bath

Sleep

Brush

Glasses

Monkey

Elephant

She also signs the actions to Incy Wincy Spider, Row Row, Twinkle Twinkle, the Wheels on the Bus and a few other songs.

She can high five and fist bump, blow kisses, give tickles and reach out to be picked up.

She knows her feet and toes, her nose and her head.

She can wash her face and hands with a wet wipe (although she is started to just suck on the wet wipe!).

She loves to take off and put on hats and glasses, she also likes putting things in and taking them out of boxes or bags.

She can brush her hair and ours. She can feed herself with a spoon (but doesn’t like to do it!), she mostly eats finger foods.

She can hold a beaker and drink (she stopped having a bottle around 18 months when she decided she no longer wanted it).

Physically, Audrey definitely suffers from low muscle tone. She is extremely flexible and started bum shuffling properly at Easter time. Now she is into anything and everything. She has only just started to show interest in standing and it is a million miles away from the stiff standing typical children attempt. She is pushing onto her feet, with us holding her under her arms and can stand for a second before wobbling out of it. It still feels like a huge step forward, walking is the next big thing to master… the day that I can buy her shoes will be a great day indeed 🙂

   
 

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Passing the time

Time is a funny thing. If you have 10 minutes to get ready and leave the house it feels like a ridiculous rush, but 10 minutes waiting for a bus feels like forever.

I’ve been pondering the passing of time a little lately because of Audrey. It’s well known amongst those of us raising a child with Down Syndrome, that things take longer. Whether it’s growing (Audrey wears age 12-18 months, but she is almost 2) or learning (she’s still not mobile and only has a few words).

It’s funny how often with a child (of any kind) that small pockets of time feel like forever. Phases of teething or fussiness or not sleeping… Often these things last a few days or a week, but every time I’m in the thick of a new phase, I think it’s going to last forever! I literally have to keep reminding myself (by repeating a sort of mantra; “it’s only a phase” or “this too shall pass”!). Do I get my flair for the dramatic from my mother? Ooh she loves a bit of drama (even if she says she doesn’t). Who knows? But when we hit a bump in the road, I hit panic mode. Worrying she’ll never sleep through the night again or never eat a breadstick again or never self-settle for a nap etc. In reality, you might get 7 mornings of 5am starts, but then you might get another 7 of 6.30am-ers, who knows?

On the whole, we have a pretty good girl on our hands. One that does self-settle and does sleep through; 99% of the time. She’s very loving, easy-going and eats well. And although these little phases feel long, but realistically pass by quickly, Audrey just isn’t growing up very fast. So we also have the flip side of time passing very slooooowly.

This is magnified by her peers. The gap is wider than ever now that toddlers younger than Audrey have more words and can walk confidently. It’s all very well when we are at home with Audrey in our ‘bubble’; in our bubble she’s a genius. We cheer like crazies every time she gets a motor skill spot on, every time she attempts to stand (she’s pretty far from standing, but she is just starting to push up onto her feet if we hold her under her arms), we look at each other filled with pride when she says and signs ‘Mummy’ and ‘Daddy’. Audrey gives us many reasons to feel proud.

We have just been to stay with friends who have a daughter 3 months younger than Audrey and this made her slow progression all the more obvious. We stepped out of the bubble. I mean, I had Audrey out in my arms when this child was still growing in her mummy’s tummy and yet, here she is saying all our names, running to collect whatever colour ball she is told to… Even my husband admitted a “pang” and hey, it’s only natural to get those feelings, how can we not?

What I have realised is how my sadness has shifted since Audrey’s birth. It’s no longer “Why us? This is so unfair”, now it’s all about her. We were not unlucky to have a child with Down Syndrome, but Audrey is unlucky to have it affect her life in a negative way. Because it’s not all kisses and cuddles (ok, 90% of our day is I guess), but it’s a life faced with “disability”. Which is still a bit of a dirty word for us, but it’s true that she doesn’t have the same level of ability as her peers or even those younger than her and that sucks.

What I took away from our visit with our friends, was that Audrey and Ivy should have been running around together, playing games, holding hands, chattering away… But instead Audrey was bum-shuffling as best she could and Ivy was from time to time upsetting her with dangerous (loving) cuddles! She kept squishing her older friend who is much smaller than her. And yes, I felt a pang of jealousy that Audrey couldn’t do all these simple things her younger friend can, but I didn’t feel bad for us, I didn’t feel upset that we had been dealt a bad hand, I just thought how it sucked for Audrey. And the only way I could feel good about it was to think; one day they will be great friends. One day they will hold hands and run around together and Audrey will teach Ivy a little something about being different and being patient and hopefully we can all laugh about the “death cuddles” and Audrey can have a go at flooring Ivy with a cuddle of her own and we’ll all have a good chuckle at how time has finally flown and how grown up our kids are!