Party time

The first time Audrey was invited to a birthday party (by a child who’s parents we didn’t know – a nursery friend), it was a real example of how she was accepted and liked by her “typical” peers. It was a big deal.

When we went to the party, we all had a good time overall but Audrey did show signs of being “different”. She wouldn’t eat (and the food on offer was the stuff of dreams: crisps, blueberries, chocolate cake, sausages…) and she asked to go home. She wasn’t crying, distressed or upset, she was just… uncomfortable.

We had a couple of other party invites and basically decided it was important to always get out of her comfort zone and see how she got on (rather than say no and miss out through fear). Again, we saw Audrey not eating (despite the selection of food being perfect), asking to go home or complaining it was too loud, but we never let it stop us trying, because she often enjoyed a little dance and she always left happy.

And then it happened- she ate at a noisy party. She joined in. She didn’t complain. We had a great time.

Now both our kids live for parties! (Because they love music, presents and cake).

So we were pumped last weekend to be offered a chance to go to Big Fish Little Fish at Stanmer Park for a – wait for it – family drum n bass/jungle afternoon rave. As we set off to drive up the road we realised that (yet again), we had left the kids’ ear defenders. We have them for events just like this and we literally never remember to take them, so the kids just have to make do and deal with the noise.

We arrived on a very sunny day to the amazing marquee of bubbles and play tunnels and a very loud sound system and I admit, I was a little worried. But Audrey (and Rex) bossed it. They came in, ran about exploring and got stuck in. Audrey showed a wobble initially when she had no interest in having some apple juice (funny this is a measure of how uncomfortable she is, but it is!), once she had settled she took a sip and I knew we were ok.

She showed enthusiasm for the face painter, again, something I shamefully would associate as something she “might not like because she has special needs”, but I knew she had dabbled a little at nursery and she seemed keen, so we queued up. When I sat her in the chair, the face painter asked me if Audrey had had her face painted before and she was just very considerate and gentle with her. Audrey was a really good girl and the face painter was so fast that before I knew it, I was looking at the most beautiful tiger in the world!

Aside from dancing, drinking juice, climbing through tunnels and rolling out play dough, there was also the fabulous outdoor space filled with “rustic” climbing frames and slides for the kids.

Audrey was unsuitably dressed for this in her fabulous Tootsa McGinty dress and Next tiger wellies, but oh how she surprised me with some supreme climbing! Rexy too (but it’s extra tough for Audrey with her low muscle tone).

As someone who regularly sticks to routine, taking the kids to the same groups/parks/cafes that I know “work” for us, it seems a little crazy to be saying this, but it’s good to step out of your comfort zone sometimes. Kids love routine and it can be hugely stressful if you do something new and they hate it or misbehave, but you’ll never know unless you try.

Last Sunday we went to see my Nan (the kids’ Great Grandma), which I thought would probably be stressful/chaos, but was actually great. She has just been moved to an old people’s home and she is almost 99 – Audrey’s middle name is Emily, after this nan. Emily lit up seeing Audrey and Rex, but so did all the other old people in the home, they looked so happy to have children running around, it was great. The kids loved the piano there (and made quite a bit of noise, but no one minded).

That same day, we were going to the seaside, the kids were excited (because, despite living by the sea we rarely go down there). I thought that would be a really fun activity, but instead, the sun disappeared as soon as we pulled up (literally, a weird sea fog arrived and the temperature dropped). We got down onto the sand and Audrey’s nose was running, the cold wind was blowing and no one was having any fun, we were all shivering. But at least we tried!

Next week are trying a new dance class at the marina. Watch this space!!

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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!

  

Friends and Family

I’ve read blog posts where mummies (of children with DS) have said “you certainly learn who your friends are” (after a Down’s Syndrome diagnosis), so I just wanted to write a post in praise of our friends (and family).

Because we certainly learned who our friends were… and they were exactly who we thought they were. 

Lots of worries flashed through my mind in those first weeks of Audrey’s life. And one of those worries was that some people may not want to see us anymore, because our child had been born with special needs. I feel like an idiot as I type that now, but at the time it was something I genuinely  thought. I worried people would feel awkward having to say she’s cute (when really they would be looking at a face that just screamed Down Syndrome and therefore ugly) and that they wouldn’t be that interested in visiting her. 

Shall I enlighten you as to how our friends reacted?

Well, let’s see… EVERYONE wanted to see her. They were all interested and positive and supportive and… I suspect exactly as friends are when any baby was born, but it felt like they were extra in love, extra supportive.

Maybe this is just how people are when a baby is born (I have no comparison to a “typical” baby), but with Audrey it was like we had made a little celebrity. Friends went out of their way to shower her with love.
Of course it is an unwritten rule that when you see someone’s baby you have to say they are beautiful or cute or some positive adjective, even if the baby looks like a wrinkled old man or yoda. But you don’t have to say you love them. I didn’t expect other people to love my baby, but they did. They loved her. And they were wonderful at showing it and saying it. Not just through gifts of clothes or toys (although we were well and truly showered), but through visits, texts, emails, gifts of food (for us), lots of help, support and lots of gushing about Audrey. Over compensating? It didn’t feel like that. Honestly.

And as she’s grown, people haven’t shyed away or avoided contact, they’ve thrown their arms open to give the B-W family (but mostly Audrey), a massive hug. 

Why on earth did I expect any different? 

Ted are I are both blessed with an excellent bunch of school mates who still make an effort to hang out, as well as lots of cool university friends, Brighton friends, work friends and now NCT (antenatal class) friends, all of whom have been great. 

I have so many positive friend moments that play through my mind… Becs coming with me to hold may hand through the scan that discovered Audrey wanted to get out, the tearful hushed conversation with my brother as I explained why we had struggled to confirm her name, the dreaded tearful phone calls to Claire and Mary the morning after she was born, which were met with declarations of instant love. Unconditional love. Katie and Claire standing with me when the doctor confirmed Audrey’s heart was fine and the tears flowed again… I’ll stop there as I can’t name check everyone and I don’t want anyone to feel left out!

The unconditional love is the key. No one was planning to love her only if she was cute. Or only if she could walk at 12 months. Or grow up to be a genius. 

They love Audrey because she is a little piece of us, their friends. Oh and she’s awesome.

Here’s a little dig through the archives for Audrey pictures with friends and family…