Aim of the game 

Today I am attending a Mothers Meeting (http://mothers-meeting.com). I got my ticket after a friend vaguely explained the event to me and said I had to go as she is on holiday and can’t make it.

As far as I can gather, it’s a networking event for like-minded mummies; those of us that like clothes and coffee and design and cool stuff. From what I’ve seen on IG, a lot of the mums attending are creative types with their own businesses. I’ve had an email that says we will all have a little opportunity to say something about ourselves(!), so I thought I’d talk about this blog. This is the closest thing I have to ‘work’ at the moment!

So it got me thinking, what is my aim with this blog? How will I describe it? It’s not just mummy ramblings… Honest!

My main aim is sharing the ups and downs of life with a child with Down’s Syndrome. More than anything I just want people to understand that is nothing like you might imagine. 

Imagine having a disabled child. Depressing isn’t it? Picture the mother of a child with special needs. Is she mumsy? Is she Florence Nightingale?

I guess I want people to know it can happen to anyone, rich or poor, cool or uncool, caring and uncaring. Kids with special needs are born all the time and the people that have them, love them and do normal things.

One thing that always gets me a bit ‘ranty’ (apart from too much red wine), is the fact that 9 out of 10 women in the UK (and I believe it’s the same in the US) abort after a near-certain Down’s Syndrome prenatal diagnosis. So the majority of kids with DS that exist were surprises. 

I guess there are two reasons to raise awareness; 1. To support those of us that had the surprise (share our feels of disappointment, grief, guilt, confusion and how we moved on) and 2. Help women who receive the prenatal diagnosis make a decision based on what it is really like to have a child with Down’s Syndrome (it’s not as bad as you imagine! I promise you’ll love them and they’ll be amazing!).

I appreciate we get a lot of love from pro-lifers, but Audrey isn’t here because we are anti-abortion (although I don’t think we would have aborted, I’m not anti-abortion in the right circumstances). But I do think it’s terribly sad that couples might make the choice to abort a child based on fear and a stereotype of what ‘disabled’ or ‘special needs’ is.

I mean, ‘special needs’ isn’t cool. It’s not sexy or fun, it sounds awful to me. I’m hoping our Instagram and blog can help people realise that it can be cool! And yeah, maybe one day Audrey will want to be sexy (and we’ll still feel icky about it, just as my parents did when I started wearing mini skirts and crop tops), but a part of me will also be thinking “Yeah, go Audrey!”, because she can be whoever she wants to be and that’s exciting!

Today I’m going to meet some cool mums and (hopefully without coming across as a ranting crazy), bang the drum a little for Down’s Syndrome. Let them all know that it’s not the end of the world and that it can be cool. I mean, look at our cool little dudette…

   
   

World Down’s Syndrome Day 2015

21st March is #WDAD15 (World Down’s Syndrome Day). A time to raise awareness, raise money and raise a toast to that special person with an extra chromosome who has affected your life.

A year ago, Audrey was just 8 months old when we attended a local gathering and met lots of DS families… and faced seeing older children and adults with DS; which was something that definitely scared me back then. We came away feeling good. For me, raising awareness is predominantly about showing how ‘normal’ (whatever normal is!) life can be with a child who has DS. Of course things are different, but those early panics brought forth feelings that nothing would ever be the same again… That this little baby girl would have a difficult and sad life. So I want my blogging and instagramming to show that Audrey’s life isn’t a struggle, she’s not suffering, she’s just getting on with things and she just so happens to also be incredibly beautiful and wonderful!

Mixing with other families serves to strengthen the feeling that ‘everything is going to be ok’. The surprise of a child with DS can make you feel like your world has been crushed, when in fact it’s just shifted a little. You may end up on a slightly different path to the one you planned, but isn’t that what makes life great?

People said to me that Audrey would teach us a lot and initially I thought that was just a cheesy statement that gets dug up to make you feel better. But just 20 months in and it’s so true. She has taught us so much already. Priorities shift when you have a child, but I also think I look at life differently.

Isn’t it great to have people in the world who challenge your view of beauty? And make you less judgemental? Making you appreciate the smallest things? Well that’s what Audrey has done.

I never could have imagined that I would become this enthusiastic member of the Down’s syndrome community, but here I am, sharing our story and being thankful for Audrey everyday. She is the love of our life and we are so excited to watch her grow and learn. And how amazing is it that social media lets us watch other little ones with DS grow up too? We can all be connected from all around the world, sharing our ups and downs, giving support where needed. 

Happy World Down Syndrome Day (taking out the ‘s this time for the Americans!)! 

Oh and of course, here she is… Will try to get pictures of us at the local WDSD event and post them later.



The power of love

From the age of 4 to 16, I lived next door to a family who had a son with Down’s Syndrome. I would say the overall feeling I remember when coming into contact with him (his name was Wayne), was: fear. To me, he was a giant man-baby, who had large, rough, dry, twisted hands that he would want you to touch. I did not want to spend time with Wayne. His mother, Betty, was (still is) a friendly lady with a cheerful voice and she was devoted to her family. She had two sons, (the younger was married with children), but Wayne remained at home, as intellectually he was possibly at the stage of a 2 or 3 year old and he was still in nappies (he was in his 20s/30s).

Sometimes my mum would send me next door to pay Betty some ‘catalogue money’ (she ordered things for us through her catalogues, god this was the 80s/90s, but sounds like the dark ages!). I distinctly remember that Wayne was more often than not, sat with large headphones on, listening to “his music”. As I grew older, I felt sadness for Betty. Her husband died at some point during our time there and so she was alone caring for Wayne.

My mum is a one for repeating stories, so I’ve heard 100s of times how when Wayne was born, the doctors left him on the side and told Betty he was like jelly, that he wasn’t worth her bothering with… she should call an institution to take him away… and how she held him and told them they were wrong, he was her baby and she was keeping him. She loved him instantly and unconditionally. I always thought it was amazing that she dealt with this ‘burden’ so well. I recall she had someone come for respite care – so she could go to bingo or just have time to herself and it just seemed like such a rough deal. Rough that as an old woman (old to me), she still had a ‘child’ to look after.

I also heard stories of how she had taken him out of a bad nursery because they had just dumped him in a corner and not worked on his development at all. Of how she had been advised to have a second child quickly so that Wayne would have a sibling to learn from. And how he had exceeded expectations on many fronts – because doctors had said he would never walk and also that he would die at a very young age. Wayne actually died a few years ago and he was in his 50s. I suppose it wasn’t that long after that Audrey was born. Betty was keen to meet her and I was really keen for her to, too. It’s funny how you become part of this club. Someone new joins the club and you’re so excited to welcome them, but you know from their perspective it’s not a club they wanted to join… But it won’t be long before they’ll be the ones excited to welcome a new member.

When Betty did meet Audrey, she kept saying how she was ‘high functioning’ and definitely more advanced than Wayne at that age etc. It was very sweet of her and of course I’m pleased to hear it, but I realise how it doesn’t matter. Of course I don’t want Audrey to be in nappies in her 50s and I want her to be able to hold a grown up conversation – in fact I have very high expectations for her… but…. I also know that no matter what, we will love her and be happy having her around. She is amazing and a joy to us. Just as Wayne was to Betty. I know she was happy to have had him. Her life was not the burdened one I imagined from the outside.

So the next time you see a mother or father dealing with their child with special needs, don’t feel sorry for them. Don’t think they are burdened. Just remember, there is love there and love is a very powerful thing. Huey Lewis knew it. I know it. Now you do too.

#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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