Great or managed expectations?

I have a question for mothers of children with Down’s Syndrome; is knowledge power? Do you prepare for the worst or simply expect the best?

I follow a lot of families with the extra chromosome in the mix. I see the highs and lows of parenting (full stop). I also see the highs and lows of parenting a child with special needs.

Sometimes I see stuff that scares me. I start analysing Audrey, or worse; start Googling.

Something that has played on my mind recently is “sensory overload”… Children with DS who are unable to cope in noisy/busy environments. Concerts. Parades. Carnivals. Festivals. Stuff that’s fun. 

We’ve had a taste of Audrey reacting negatively to situations like this when she got upset at the (very noisy) Children’s Parade and sometimes she complains when things are “too loud”. The thing is, lots of kids might get upset by a loud parade, but because she has Down’s Syndrome, it’s the condition that gets the blame. 

We went to a pirate birthday party and Audrey was especially clingy and wouldn’t eat her food (even though chocolate, yoghurt and fruit were on offer – her faves!). She only really relaxed when all the kids went outside to hit a piñata and we stayed inside and “Let it Go” started playing. 

And then there’s the family-friendly gig we went to (with ear defenders) and she just stared with her mouth open the whole time. She at least clapped after every song, but for Audrey, our little groover, it was odd. She usually goes mad for live music, but instead she looked more “special needs” than I had ever seen her.

And I feel it’s a double edged sword – everyone either assuming she’s gentle/placid/agreeable (she’s not always like that by the way) because of the Down’s Syndrome….

Or when she is moaning or whining like a typical 3 year old would, I feel worried about people thinking it’s a kid with special needs losing the plot. That they are looking at me and thinking “Poor woman, I bet that kid is hard work”. If she were a typical child, it would just be that Audrey is having a standard tantrum.

Recently it was bonfire night and we went to a friend’s house for fireworks. We did forget the ear defenders, but to be honest, I don’t think they would have made much difference- fireworks set off in a small garden are and absolute assault on the senses! Audrey didn’t like them at all and Rex wasn’t keen either, in fact Audrey’s 2 year old friend came inside to escape too. But one of our friends was very much singling out Audrey as having a problem with them, you could hear from her tone she was suggesting that it’s an issue for Audrey because she has Down’s Syndrome. And that grates to be honest. It’s frustrating that we can’t escape her syndrome sometimes.

I guess I used to assume everything was just Audrey being Audrey, but as time goes on, I’m wondering; should I prepare for stuff that kids with Down’s Syndrome typically encounter? Maybe I should stop fighting it and accept that DS makes her more prone to being a certain way?

I read a post from a local lady, who was upset because she cannot leave the house alone with her 12 year old son (who has DS); it’s too hard – he runs off. It’s dangerous because he runs across busy roads and she can’t keep up. Other mums commented to say that were in the same boat, one even described her son as like “Iron Man” – she can no longer cope with his strength. I just tortured myself by reading the whole thread – kids that throw things, sit down and refuse to move, don’t sleep until the early hours…

I look at Audrey, our gentle, usually careful little girl and cannot imagine her becoming an out of control runner, toy thrower or rubbish sleeper… But I worry about it regardless. Mostly I see a bright future of cuddles and fun with Audrey, but the worry creeps in sometimes. It’s natural and it’s enhanced when a condition gives you clues as to how human might be. 

And as she grows, she learns and she starts pushing boundaries, so I’m getting used to Audrey causing more trouble than she used to and not being that placid agreeable creature that some people assume she is. So I guess I’ll just try to go with the flow and see how she turns out… Much like with her brother, who has no “syndrome” (that we know of), but is proving to be an active and tiring baby to look after! So do I project and assume he’ll always be hard work?!! No! Let’s just see what happens…!

Me vs. Mummy


This post is not about fighting my mother. Or indeed fighting my mother persona. It’s about being me versus being a mother. Yes I know you can do both. Not so sure I can though.

Women are all different of course and some are better at the “balance”(?) than others. I am back in the thick of being Mummy and not very me. Upon his arrival, Rex reset the dial to “maximum mummy” and I didn’t see it coming which was stupid considering I’d already been there, done that.

I feel like I’m wading through treacle even though everyone bangs on about “how quickly this time goes”, but I want to walk down the street alone, carrying a small handbag, maybe containing a book I’m half way through reading and meet a friend to sit and talk about crap for a couple of hours whilst drinking wine and nibbling cheese.

Instead I leave the house with a baby strapped to me, rucksack of many essentials on my back, pushing another child in a buggy. Often handing out breadsticks, constantly clock checking for nap times, feeding times, nappy changes. Worrying if little people are hot/cold/thirsty/have enough sun cream on. I can’t eat cheese because we think Rex is dairy intolerant (and I’m breastfeeding), I can’t drink copious amounts of wine as I’m told that’s not his thing either.

My hair is brown (with increasing grey) because my usual dabbling with fun colours is too much up keep. My clothes are functional, drool sodden and dull. I’m in need of a manicure, pedicure, wax, eye brow tidy up, massage… a full MOT basically. Yep, I feel a bit like an old car that needs a tune up.

Because I have been here before I know it will all come good. I can have silly hair again. I can wear clothes that don’t require access to my boobs, I can drink and eat what I fancy and I will one day spend time alone again. But it is so hard to imagine getting out when I am here; in the treacle, stuck to one child with another trailing behind.

And of course I see those mothers who don’t have to choose. They have their make up on, they are expressing or formula feeding and they are out and about enjoying themselves sans babies. Kids don’t hold them back, don’t change them. But I personally cannot get my head around it… I feel so very responsible for these mini-humans, they are my responsibility and Daddy is a helper. Yes I know this is stupid, but especially whilst I am on maternity leave, the baby is my “job” and it seems too early in the contract for taking a break. 

Plus babies seem to make me a routine-obsessed-control-freak. Yes, I’m that fun!

When the fog lifts and I can be “me” again, I’ll try to enjoy it as best I can. I’ll do a little dance if I get a full night’s (unbroken) sleep, actually I’ll do a big dance. The entire Flashdance routine.

In the meantime I’ll dabble in me… Put on something nice (only for Rex to smoosh banana on it and puke on me). Blow dry my hair only for the wind and rain on a long buggy walk to completely enhililate it. But these are glimmers of hope as the fog lifts… I can almost see the Cos shopping spree and cocktail night  somewhere on the horizon…

Photos to follow are a reminder of me before “Mummy” me…

San Fran 2009 and NYC 2012; freedom, hair, jewellery and fun: