Stuff and things 11

As I am struggling to get time to blog, I’m just posting a quick update of what’s going on with us.

So let’s see…

Rex is nine months old. He can walk around the coffee table at an incredible pace, he loves to stand (with support) and I suspect he will be taking his first independent steps in no time. He grabs  and pinches and pulls and bashes and bangs… He is active and strong! We are really getting a varied parenting experience. His nights are… Random. Best case, he sleeps 6.45pm-4.30am, has a bottle and then goes back to seep until 7am. Worst case, he wakes at 9.30pm, midnight, 2.30am, 4.30am and wakes for the day at 5.30am. The second scenario is breaking me.

Audrey is walking more and more. I’m a little frustrated she’s not just striding down the street, but she will get there. She asks to go walking when we are sat in cafes etc and does laps around the room. Her speech is evolving at pace – she amazes every day with new words and phrases.

Rex enjoys eating and is a blueberry fan like his sister. Audrey is getting fussier and fussier (just like me as a child), so we are going to have to work on her food variety. Vegetables have to be sneaky!

I love Christmas and so the build up has began. Audrey will definitely appreciate it a bit more this year. Rex… Well maybe he’ll get it next year. At the moment I think the wrapping paper will be more of interest than the pressies.

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…!

A World Without Down’s Syndrome

Daddy holding his tiny baby daughter

When Audrey was born, my brother Googled to find out if any celebrities had a child with Down’s Syndrome… and he found Sally Phillips. It was very thoughtful of him to try and make it “acceptable” for me – appealing to my (shameful) interest in celebrities. At the time I read an interview with her talking about her son Olly and it was very positive. But I couldn’t find more than that one interview and I guess I wondered why she didn’t do more. But now I see that it’s a really big deal to “put yourself out there”. 
I have wanted to write about Sally’s documentary (“A World Without Down’s Syndrome”) for weeks, but I’ve found it incredibly hard. The lead up was a draining and consuming time. I felt anxious and stressed about being involved, about making a difference. So much positive and negative feedback, so much going on… And yet I know that this was just for those of us with an eye on the subject. For many, the film may have passed by unnoticed. 

But not me. I was watching it approach slowly, following a behind-the-scenes Facebook group that was prepping for press and publicity around it. I had planned to catch it at my convenience on iplayer, but after watching the beginning, I had to stay up and watch it. I was crying within seconds of it starting!

I was so desperate to write about it, yet my thoughts sort of ran dry. So many reviews. So many reactions. It’s been tiring processing it all. It matters to me – that people would watch it and love it, watch it and learn. But I appreciate why many thought Sally wasn’t the right person to make it – she comes from a biased perspective. However it needed to be made and it needed that positive skew. That was the point – communicating the positive side to having a child with Down’s Syndrome – balance against the negative information and medical condition list you are given at diagnosis. And also questioning a society where we actively look to rid the world of people who are different. Someone has decided that this is a wholly negative condition and therefore it’s worth screening for accurately.

If you watched the film and took it the wrong way (maybe thinking it was anti- pro chioice, judgy or preachy? Maybe thinking it sugar-coated life with a child with special needs?) please be assured that wasn’t the aim. It was a truth, it was Sally’s truth.

And just as Sally shared her truth, I share mine. Audrey hasn’t needed lots of medication or operations. She was on oxygen for the first 6 months of her life because she needed a little help breathing in deep sleep. She needs glasses because she is long sighted and (like me at her age), she has a lazy eye (aka squint). She has low muscle tone which is indeed a bugger and is making it harder for her to walk, but it also means she can practice yoga like a pro (like her Great-Grandmother, Emily, aka the Filleted Lady!). She lacks strength in some areas, but is amazing in others. She is basically a human being, perfect and flawed…yep, she is one of us.

Trying to create a world of perfect humans scares me. It also scares me that the very same brother who found Sally Phillips Googling famous people linked to DS, thinks that it’s a good thing to rid the world of the condition. Yes he said that. How can he of all people not get it? I guess it’s a common view that the world would be a better place without disability. Again, I feel I have too much to say on that subject so I’m struggling to blog about it. But clearly, a world of varied strengths and weaknesses, of light and dark; that’s a better world than one of “perfection”. I can’t even say for sure what perfection is. I had a lazy eye as a child, my sister was diagnosed with MS at the age of 40 – are we so flawed we shouldn’t have been granted life? Eek, what a debate this could be…

My hope is that people simply think about people with Down’s Syndrome as that – people. Understand that they contribute to the world we live in and bring happiness to their families. I’m not a religious pro-lifer, but I feel very blessed to have Audrey. Our lives are richer and happier for having her in it and she’s about as close to perfection as I could ever imagine.

#worldWITHdowns

 

We’ve come a long way, babies

I have a tendency to project. Always wanting to be at the next stage of life, always worrying about what’s next, definitely struggling to live in the now.

Today I sat with Audrey whilst she fed herself a yoghurt and her younger brother napped upstairs in his cot. I took a breath and marvelled at where I sat, how far we have come.

In Rex’s tiny speck of a lifetime (7 and a half months), he has gone from only sleeping in the sling or on me at night, to sleeping in a buggy, cot or sling, sleeping at night (in his Sleepyhead) in a cot from around 7pm to 4 or 5am. He sometimes even settles without a fuss. We sit and eat dinner without the sound of a crying baby and I sleep for one long stretch rather than I’m tiny 1 or 2 hours stints. He is eating well and taking formula happily now the booby is no more. He crawls, pulls to stand, cruises along the furniture, claps his hands and is a happy boy.

Audrey has taken independent steps, continues to amaze us with her language and has an ability to make me cry with joy on a daily basis.

Once upon a time, Audrey wouldn’t eat food off a plate (she was so used to the high chair table). We worked so hard to get her to eat off a plate, but she would only accept one piece of food at a time! I mention this because the other week at Whoopsadaisy I put cheese and crackers on her plate and someone said “She’s having different foods on the same plate now?” And it took me a while to understand what they meant! Because I had forgotten how hard we worked to get Audrey to accept a plate of varied food. Just like I can now give her a spoon and a yoghurt and she just eats (she used to get stroppy and say “Mummy do it!!”).

Audrey asks to use the potty, she often drinks from an open cup. Rex holds his own bottle, he responds well to us signing “milk” and “food”.

They achieve great things and all I can do is think “Yes, but I wish she fed herself every meal time..” Or “Yes, but I wish he was sleeping through until 6.30am…” I need to be satisfied with how far we have come!

I guess sometimes it feels like baby steps (no pun intended), but we are getting there – both of my beauties are coming along and making me proud every day. 

My world 


OCTOBER = Down’s Syndrome Awareness Month.

This seems to come around so quickly and  I worry I’ve got nothing new to say. Or that I’ve said it all throughout the year in my general posts. 

Just know that we (the DS community) raise awareness because we care. We care about the people in our lives with Down’s Syndrome and we fight for them. We fight for others to become “aware” – to try and make them understand that DS isn’t necessarily what you think it is. We look for balance – for dark and light, Down’s Syndrome isn’t a depressing life sentence, but it’s not unicorns and rainbows either. That’s just life full stop.

I sat and thought about what I wanted to say this year and realised I want to talk about whether we can ever really get someone outside the circle to fully understand. Can we ever really make Down’s Syndrome appealing? Can we ever make it ok and not negative?

Close friends of ours got pregnant. They had the screening for Down’s Syndrome. Mum-to-be says to me “So we had the test and I told the lady that we weren’t really that bothered about the result because of what happened to you..” – at this point I start to feel all warm and fuzzy inside; that they would feel ok with a high chance of DS because they know and love Audrey. Ahhhh. But then she continued; “Because, well, you got ‘low risk’ and it didn’t mean anything – Audrey had Down’s Syndrome”. Oh. She was making a point about the test not being worth doing because it’s not accurate, not that it’s not worth doing because they’d be ok with a child with Down’s Syndrome. Of course this was an opportunity for me to push back and question her, but I didn’t. I just smiled and nodded like a fool. I don’t really like confrontation, but I suspect she would have backtracked and it would have been awkward.

My point is, even people close to us (on the edge of the circle), don’t necessarily feel ok about Down’s Syndrome, so how on earth can we spread a balanced message of hope and positivity to pregnant women who have no connection to DS?

Well, maybe we can’t… But maybe we can, so we’ll keep trying.

We can fight for better language (a baby with Down’s Syndrome, not a Down’s baby. Low or high “chance” not “risk” of Down’s Syndrome), we can fight for better knowledge (facts about people with DS attending mainstream schools, leading independent lives) and share our positive stories to outweigh the dated negative ones.

And so I’m going to point you in the direction of this (highly anticipated in our community), documentary; 

http://bbc.in/2dkMib6 

And this great article;

http://www.telegraph.co.uk/women/family/sally-phillips-my-son-has-downs-syndrome—but-i-wouldnt-want-to/

And I’m going to continue writing my blog and sharing our lives in the hope we reach the right audience. It certainly can’t do any harm to keep on keeping on… We live in a rich and varied world. Life would be so boring if everyone was “perfect” and “normal”.

I can only present life as we know it and our experiences, but I know someone who had an adult son with Down’s Syndrome that was in nappies and only had a few words – the kind of “worst case scenario” if you will. But they loved that son/brother/grandchild and never regretted having him. They would have had every right to be bitter and angry about the life he had/they had, but they weren’t. Love doesn’t necessarily conquer all, but it has a bloody good go at doing so.

One thing I’m 100% sure about is; my world is better for having Audrey in it. 

#worldwithoutdowns

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:

My daughter 

I have a 3 year old daughter. She likes to play with my hair whilst she sucks her thumb.

She loves music and dancing.

She adores books.

She gives epic cuddles.

She likes watching Mr Tumble and Justin Bieber videos.

She reenacts ‘circle time’ from nursery at home with her toys.

She loves fruit.

Over-used phrases since she arrived include “I love you”, “You are so pretty”, “You are so clever”, “You make Mummy happy” and “Cuddles!”.

She is everything I ever dreamt my little girl would be and much more. As each day passes I see us together in the future; singing, shopping, scoffing popcorn at the cinema… All these simple things fill me with joy and excitement. My heart swells when I hear her call me “Mummy”.

…And I will just add that I still have to suffer the obligatory tantrums over presenting her with rice cakes instead of breadsticks or asking her to put her jacket on – it’s not all plain sailing.

But oh she is fabulous… Entertaining, amusing, cute as can be and incredibly emotionally intelligent (if she so much as sniffs a crack of upset in my voice she comes over “Y’ok Mummy?” – head tilted to one side in concern, offering a cuddle).

When we go out, I feel like I am proudly presenting her to the world; “Behold! My beautiful offspring!”.

The other night I put her to bed and laid down with my face next to her’s and said “I love you” and she stroked my face and said “I love you” right back. It was pure magic.

I fall more and more in love with her everyday.

Nothing out of the ordinary here, I assume many mums will read this and think, “Yes, sounds like a standard mother-daughter love.” And it is.

It’s just my daughter has Down’s Syndrome. So when she was born, someone gave me some news and some literature and it was like putting a sticker on her that said “This one is going to be a little bit rubbish and not meet your expectations”.

 

Thankfully that was bollocks.

This post is also on Selfish Mother; http://www.selfishmother.com/mother-daughter-love