The Good Stuff not in the Guidebook

Last week I had a rare full day alone with Audrey (as we are in the school holidays and Rex was at nursery). We went in the car to a lovely play park and cafe by the beach. We picked out our best pebbles and I told her how I used to go to the beach with my mummy and collect the best shells. Audrey has a wonderful way of interacting, she’s supportive and interested; “Oh wow, with your mummy? That’s great!”.

We had a play in the park, we shared scrambled eggs and toast in the cafe. Audrey bossed me around a bit, she bossed around others too (telling a mum to “Calm down” when she was telling off her toddler!), we got back in the car and headed to the supermarket.

She flatly refused to get out of the car when we go there – told me she wanted to stay put. I tried to be as gently as possible in convincing her, but I was getting no where fast. I eventually had to man-handle her out and then distract her with news that the trolley had a ride-along buggy board! Fun! It worked.

At home we were both tired and sat watching a film until I thought it best to head out again (or we’d easily watch TV all afternoon) and we walked to our local park.

None of this is a big deal… but it was a big deal. For Audrey to walk to the park and back and not ask to be carried, for her to interact and play with other children once we got there, for her to stop sensibly to cross the road and hold my hand – things one might take for granted in a typical 5 year old – I do not take for granted. I revel. I praise. Oh wow… she is going to have such an inflated ego!

Because none of this simple stuff was expected, because her default position is a condition that “limits”; I am constantly lifted and amazed by her. As we walked to the park, having a conversation, I thought back to the leaflet we were given when she was born. It’s intention is not negativity, it aims to give you a fair account of what to expect of a child with Down’s syndrome; but they have to cover everything. So the list goes on; language delay, possible hearing problems, possible sight problems, speech may be difficult to understand (if they master speech at all), a long list of health issues, challenging behaviour, the autism spectrum, food problems, thyroid issues…. it goes on and on.

To be honest we hid the leaflet away and didn’t return to it. Sometimes something will get mentioned by a professional “Of course you are aware that children with Down’s syndrome can be prone to…” and I think “No, I wasn’t aware of that” and it doesn’t matter.

I know that knowledge is power. I know it is good to be prepared. I also like that my child leads the way a bit. There was no leaflet with Rex; we just muddled our way through.

I know that for some, that negative list in the leaflet is a reality and they aren’t walking to the park with their 5 year old with DS chatting about flowers and “Oh look that’s where I had my birthday party…”, I know we are so lucky. I feel lucky every time she calls me “Mummy”, every time she holds my hand, holds it to her face and then kisses it.

Our life is not without stress – several bouts of diarrhea for the kids last week, the two of them fighting, stropping, running off, challenging me… but I want to remember all the good stuff. Actually, I want to focus on it! Because how else do I get through all the crazy days with these kids?! My magical, crazy and surprising kids, that have no guidebook.

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The Down Syndrome Diary

Back in 2014(!) I remember vividly that I was walking Audrey around in her buggy when I received a message from Jamie to see if I’d be interested in writing in a “physical diary” about Down’s syndrome – to put pen to paper and tell our story. I was very flattered and of course said yes straight away.

Audrey cuddling the Down Syndrome Diary

I had found so much comfort from Instagram accounts and blogs that I found (relating to DS) in those early days. I was inspired to share our family life and so adding to a travelling diary seemed like a great idea.

Jamie started the diary and began to send it around the world to gather family’s heartfelt stories, but I don’t think anyone could have know how long this might take or that so many people would want to be involved; she’d have to send off lots of other diaries to meet demand!

Once the diary finally arrived my house (I was definitely feeling scared to have it) I thought I’d add my entry and pass it on to the final contributors. Simple. Maybe a week to turn it around?

But, just like everyone else, it took me a while to get going with the writing. I needed to read the other entries. Then I needed some pictures of it with Audrey… but she wasn’t playing ball and oh how precious a real book of heartfelt stories is, I couldn’t let the kids have free-reign with it!

Finally I put pen to paper and wrote my entry (slightly disappointed by my handwriting!), but I must admit the words didn’t come as easily as I’d have liked. I felt a lot of pressure not to repeat what other families had written and also not to repeat things I have written in my blog over the years.

I’m very proud to have taken part, added our entry and pictures of Audrey, but of course I feel like I could have done more. Poured my heart out more, stuck in the best photographs, said something deep. And I forgot to take pictures of my entry and/or type up my words, so I can’t even tell you exactly what I wrote! Oops. Oh well, it’s with the penultimate contributor now, before hopefully winging its way to a (famous) advocate to write the forward to what will hopefully be a published piece of work!

One thing I do know, is that writing makes me happy. Advocating for Audrey and people like her makes me happy. As she begins her new journey from toddler life to schoolgirl (!), I too shall be start my new journey to pursue my writing. To devote time and energy to it, but also have the flexibility needed to work around Audrey’s school life. So far (fingers crossed), Audrey loves school and is throwing herself into it all will full enthusiasm and making me proud like she always does.

#DSAM2014

October is Down Syndrome Awareness Month. I love a good hashtag so… #DSAM2014.

Raising awareness, (as I believe I’ve already rambled on about), is important because it helps new families and anyone who might come in contact with someone who has Down’s Syndrome feel more comfortable.

I appreciate there are tons of blogs raising awareness and giving important information on DS, in fact, there are too many for me to read! Yet I know that outside of the DS bubble, they are likely to go unnoticed. I certainly never noticed DSAM pre-Audrey!

But when Audrey was just days old, I gorged on birth stories – reading those was such an amazing, cathartic, experience. It was also a little like poking a bruise – reliving those overwhelming, negative emotions. I guess it feels ok to have had crazy, negative thoughts if other people felt that way too… Especially if, look! they’ve made it out the other side and are so happy! There was so much positivity to cling to and help us through those confusing first days/weeks/months.

And even though we are only 15 months into our journey, I still feel like we’ve come a hell of a long way and also that I have a responsibility to give back… That I should be sharing our story just in case someone else finds it useful/a comfort/interesting. I also want to make sure that sharing out story seems ‘normal’ (whatever normal is), but you know, not too special-needsy. Much of what we experience with Audrey is just what everyone is experiencing with their little ones.

In fact, I got so motivated to spread DS awareness this week I did something I thought I’d never do…. I joined Mumsnet… dun dun dun!

I thought I could start a thread, offer up a Q&A for women who had either just had a baby with Down’s Syndrome unexpectedly or answer some questions for women with a prenatal diagnosis or ‘high risk’ screening. I was worried that rummaging on the dreaded Mumsnet might actually upset me – that there would be a lot of negativity and discussion around ‘high risk’ results and planned terminations. I only looked at one thread relating to the screening and someone sensible advised the expectant mother to look at, or comment in the special needs section of the site. Aha, so I had underestimated Mumsnet! They have a special needs section in the chat forums! I sort of felt like I wasn’t needed! More on mummy forums in another post… I have a need to rant about them, but now is not the time!

Down Syndrome Awareness Month has definitely helped me picture a better future for Audrey and helped me get through some tough early months… So now a year on from our first DSAM, I hope our story is helping some other new mama feel a bit better about it all.

And here she is… A very popular picture of Audrey (over 200 likes on IG) from Saturday…

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