Attention!

I’ve made no secret of the fact that when Audrey was born, that little face that showed she was “different” flooded my brain with negative thoughts.

Would people want to spend time with us? I assumed not. Would they whisper about us? Stare? Strangely I imagined her finding it hard to make friends. In fact, I thought everything would be hard for Audrey and for me.

In reality, she was a baby. A baby with a tube on her face, yes. A baby with an obvious “condition”, but she could still enjoy a coffee shop visit and baby group like any other baby. I had definitely underestimated humans in general, but I had an awesome NCT crew who were always there for me and were not phased in the slightest by Audrey having Down’s syndrome.

Inside I was still constantly surprised by how welcomed we were at baby groups, how it was never a big deal. I emailed ahead to book for baby massage, with a hard lump in my throat I would type “my daughter has Down’s syndrome and is on oxygen” and the reply was warm and… normal. My place confirmed, in fact I can remember the teacher’s words along the lines of “this class will be perfect for her…” and once there, she was fawned over like any cute baby.

Of course, we’ve had the odd strange incident, but it was less-so staring/nudging/whispering, more straight forward “My friend had one of those, couldn’t talk” or “What’s with the tube on her face?” – the bluntness was laughable. And of course she was (still is) small for her age, so you get a sympathetic head tilt or the question “Was she prem (premature)?” when discussing her age. She wasn’t premature (she was a few days late), but I found the confused look that followed that answer so uncomfortable, I would sometimes just say yes! Ha.

Once she was off O2, sitting up and joining in, quite simply the staring, the whispering, the attention: it was all there but not in the way I had dreaded. Audrey was (is!) a superstar. People are drawn to her because she is cute, friendly and funny. She was often a very enthusiastic participant in music groups, clapping, singing, head shaking. She says hello to anyone, asks people’s names, approaches children/babies when they are crying to see if they are ok. I’m more surprised now if people don’t stare, if they’re not interested in her, because she is interesting!

Since starting school, we’ve found a whole new audience. When we arrive at school, if we are early and waiting for the gate to open, I often see the nudges… older girls look at her like a living doll, they are like walking heart eye emojis gazing at Audrey. People shout “Hello Audrey!” when we are out and about and she gets presents/pictures/notes in her school bag from her friends at school. She marches into school with enthusiasm each day (often saying “Good morning” to the teachers at the gate) and she bounces out each afternoon and throws her arms around me. She is exceeding those low expectations I had of her in those early days (based on an outdated view), everyday.

I’ve actually written this because of a little Instagram post that sparked a few questions and comments from mothers of children with DS/other special needs who wanted to know more.

I know that our experience doesn’t cover everyone else’s – we are lucky in that her needs are not as complex as some, but we’ve had our moments. We’ve had to leave noisy parties and take time outs from events – sometimes I’ve felt uncomfortable in those situations, I’ve felt stared at. Those occasions are rare and the upside of the whole experience of having a child who is different is the immense joy we take in the little things she excels at and achieves,

I never knew that Audrey would have this way about her that would make me want to show her off to as many people as possible. I never expected to feel like I was accompanying a celebrity to the park! So, I say… bring on the stares!

Advertisements

Break from the Old Routine

Today Rex is going to his last session at the nursery Audrey first attended age 10 months in 2014.

If you don’t know by now, I do get incredibly attached to things. Places. People. Garments. Routines. Buggies(!). So it’s a very big deal to be leaving. It was a tough decision, but Rex has gone down to one day a week there since September last year (when we added a day of preschool) and he started to express a preference for preschool for some reason.

We felt we needed nursery (because it runs all year around, plus we can add extra sessions with short notice), so we were very reluctant to let it go. However Rex is starting school next year, so maybe it’s no big thing to deal attempt the work/school hours juggle a bit earlier…?

I will miss the Wednesday calm time, because Ted takes Rex to nursery, I get to take Audrey to school and pick her up alone, spending an afternoon with her, knowing she will calming eat her dinner at the table (Rex is not a fan of dinners). However, this isn’t a reason to keep up the expense of nursery. I have to embrace change (annoyingly), I realise that eventually the scary new routine becomes second nature pretty quickly.

But still, we are leaving a nursery that took my little baby girl all those years ago and helped her to learn so much. Audrey always loved nursery. Rex has mostly loved it. But I guess I’ve loved it the most, because there is nothing quite like knowing your child can be somewhere 8am to 6pm and be safe and cared for with a strong routine, good food, friends, learning… it was great for Ted and I to have “day dates” when the kids were at nursery!

But the time has come to move on and get used to the juggle of work and school holidays because we have many more years of that to come!

 

Game of Buggy Thrones

I need to rant about buggies/strollers/prams and general small-kid mobility. I suspect this will be quite a dull blog post for many, but read on if you fancy hearing about our experience with many buggies…

We went shopping for our first pram when I was pregnant with a baby we knew nothing about (which is how it works for most people). We still joke about when we were approached by a salesperson in Mothercare, offering us options I said “We’re not Bugaboo people”, because I thought £500 was a ludicrous amount to spend on a buggy. As it happens, we did decide to buy a Bugaboo Bee. It remains my favourite buggy to date, because it was light, easy to steer, Audrey was very snug in her cocoon and just as happy when it adapted for her to face the world, it served us well.

Audrey does the splits in a Bugaboo bee buggy
Audrey in her Bugaboo Bee

What’s “funny” (incredibly annoying) about the buggy situation is that we chose one that didn’t have a carrycot option, so if Audrey was asleep in the Bugaboo and I wanted to go home to our first floor flat, I had to carry the entire buggy up a set of external steps, a couple more in the hallway and then a double flight to our flat door. Oh and did I mention I’d had a c-section? And that she had an oxygen tank attached? Ha ha, yeah not that funny. I may have picked an option with a carrycot had I have known Audrey was going to be such a good buggy sleeper… but then again it may have been the cocoon on the Bugaboo Bee that she loved (many of our friends had babies unhappy in carrycots), I guess we’ll never know.

Anyway, Audrey absolutely loved sleeping in her buggy, so it was incredibly frustrating to me that I could rarely sleep when she slept, because I couldn’t get the whole thing into our flat without a lot of heavy-lifting and risk of waking her. But we didn’t know much about baby naps when we made the purchase. We borrowed a Babybjorn sling which was great too and when the time came to return that to my friend (who was having twins), we purchased an Ergo which goes up to age 4.

When I was pregnant with Rex, I bought a secondhand cheap Maclaren stroller to use on “nursery runs”. Because Ted was able to do drop off, I figured he could take Audrey in and I could use the other single with Rex. I also panic bought a double Phil and Ted’s (quite an old model) from a friend, ready for trips out with both of them. So we had three buggies and a sling! We had moved to a house with no steps at the entrance – I was very much looking forward to wheeling my sleeping baby in so I could nap!

Two children sleeping in a double buggy
The dreaded Phil and Ted buggy. I know they are asleep but look how uncomfortable it is!

As it turned out, Rex hated buggies. He would scream and cry and eventually fall asleep but if the buggy stopped then we were screwed, he’d wake up and start crying again. So he was on my body pretty much all the time.

My life was sling and single buggy, but when I attempted the double Phil and Ted’s double I absolutely hated it. The kids heads would bash against unpadded metal bars, the hood was absolutely useless and didn’t cover the child on top, the child below had no cover (other than the kid sitting on top of them), it had a stiff metal foot brake and the steering was terrible. It’s safe to say I was immediately stalking other secondhand buggies on eBay.

We sold the dodgy Phil and Ted double, sold the Bugaboo and bought a secondhand Baby Jogger City Select – a fantastic double (but quite bulky so difficult to get in our small car’s boot). I also bought a (new) Baby Jogger Vue (for buggy training days with Rex whilst Audrey was at nursery) and this left us with 3 buggies in rotation! Ted was beginning to think I was some sort of buggy collector. The Vue was good because it’s like a Maclaren stroller, but can be used from birth with a facing you option.

Two children in a double buggy
The Baby Jogger City Select double

Eventually Rex got used to buggy life and we sold the old Maclaren. We we down to just two buggies (closer to a normal amount of buggies?!), I figured we’d keep this all going until both kids showed more promise of walking further, but unfortunately the double buggy broke (the main frame) and it pushed us to make a decision and try life with a single buggy and buggy board.

Wow this really is a thrilling tale.

We’ve been doing fine without the double, but not great. Usually Audrey is sat in the buggy and Rex is walking or scooting until he gets tired and then he is on the board. If we have the scooter it’s quite a balancing act for me – I feel much like a cart horse as I push them and all our bags etc, the scooter slipping off the buggy frame, usually with someone complaining.

Yesterday morning Rex decided he wanted to sit in the buggy, so Audrey walked for a short while (she can get almost to school, almost!), but she hates the buggy board and so it was stressful convincing him to let her sit for the last bit. I basically forced him onto the board and he cried and whined until we got to school, where he then wanted to walk to preschool whilst I pushed the empty buggy.

It won’t be long until they are both too big for a double buggy anyway, so I have to learn how to get by and in a new twist – we have a special needs buggy coming our way today!

Audrey saw the physiotherapist and occupational therapist last week and in discussing her stamina with walking, we were told that after she turns 6, we cannot apply for a special needs buggy, they would provide a wheelchair! Which is definitely not necessary, so I’m pleased we had that meeting as we were able to apply for and receive a special needs buggy that will be big enough to cover this time and on wards whilst she is a little bit too big for a standard buggy, but clearly not “disabled enough” for a wheelchair.

I was actually prepared to just “muddle through” with a single buggy and a board, but since doing the drop off and pick up this week I am unsure it is going to work. There is no escaping that the board is not for Audrey – she doesn’t have the balance or core strength. It was something Rex loved (novelty value),  but now he is unwilling to be the one who is always relegated to the standing position.

Yesterday he was sat in the buggy and unwilling to give up his seat. Audrey walked for a very short while before complaining and as I stood begging her to give the board a try – just to the end of the road, pleeeease, Rex simply climbed out of the buggy, silently walked around and stood on the board. It was a huge relief that he helped me out for once. We got half way home before he started complaining and he got the seat whilst Audrey walked, all the time whining and saying she wanted to be carried.

I had taken it for granted that they would both simply get used to walking further, but unfortunately a tiring day at school/nursery just doesn’t lead to energy and enthusiasm for walking home. Dare I suggest I panic buy of a double buggy?!? Ted will be over the moon to try out yet another model…!

Pregnant woman and child in a buggy
The easiest way to carry two – one in a buggy, one in the womb!

 

World Down’s Syndrome Day 2019

It’s been a year since my list published on Mother of All Lists and reached a new audience with “our story” for World Down’s Syndrome Day. We’ve also been featured in magazines Best and Take A Break, on blogs like Mental Mutha and Gas & Air. Basically that’s an aim for me – not only to reach someone who needs us (a new mother to a child with Down’s syndrome or someone with a prenatal diagnosis), but also to find those who have no knowledge or connection to Down’s syndrome. To open their eyes and make them think. For them to see that Audrey is a human being with a right to live her life to the fullest.

IMG_2203

You see, on World Down’s Syndrome Day I often feel overwhelmed by the content. Videos, articles, stories, clips, blogs – all devoted to raising awareness of Down’s syndrome. The community is trying to make people aware that this is not a condition we need to eradicate, but it is something we need to learn more about and one we can celebrate not mourn.

I know that we are incredibly lucky with Audrey and her abilities. I also know that had we sat her down in a corner and ignored her (true description from a mother of how her baby with Down’s syndrome was treated at a nursery in the 1960s), she would not be doing so well. She thrives with love, care and attention and with a place in the world among her typical peers and her family.

It pains me to think that someone might receive a prenatal diagnosis of Down’s syndrome, be at a crossroads as to what to do and decide to terminate based on dated information, lack of support or because they aren’t given any other option. Medical professionals and organisations that are there to assist with a prenatal diagnosis can be surprisingly callous or biased when offering up ‘options’, imagine receiving the news that your unborn child has Down’s syndrome and immediately being asked “When would you like to book in your termination?”. I’ve heard stories of women being continually asked “Are you sure you want to continue with this pregnancy?” after they have made their position very clear.

Just to explain for anyone who doesn’t know – babies prenatally diagnosed with Down’s syndrome can be terminated up to TERM. Because the UK Abortion Act 1967, states that there “is no time limit on the term of the pregnancies” when there “is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.” “Seriously handicapped” is then not further defined, so this loose term can allow mothers to terminate based on a cleft palate or a missing arm – if you can argue a child will “suffer” due to a disability, you can abort on your due date if you choose to.

I write this from a perspective of someone who believes in a woman’s right to choose – I believe in a woman’s right to have control over her own body and her pregnancy. But also as someone who thinks that it is madness to control the lives that enter this world based on how “perfect” or “imperfect” they might be. Especially when we don’t know how to measure that. What on earth is perfection anyway?

Well I had no idea what true perfection meant until Audrey entered my life.

IMG_2244

Happy World Down’s Syndrome Day 2019!

Chicken pox perks

A couple of small spots appeared on Audrey’s back last night, roughly 2 weeks since Rex had chicken pox. This morning they were much more like blisters and so we knew this was another (still seemingly mild) case of chicken pox.

Rex went merrily off to nursery with Daddy (by this I mean he was wrestled kicking and screaming into the buggy) and Audrey and I got ready at our leisure before heading to the beach.

It’s been a glorious sunny day, so I packed up the chocolate brownies (I had saved to take into work for my colleagues), got a takeaway coffee and Audrey and I sat on a blanket enjoying a morning picnic in the sun in February!

She sang and chatted all the way in the buggy. We made our way across the pebbles, she was asking to be carried, but I said “No, I’ve got your hand and you can do it” and she did. She was in fact very proud to walk across the pebbles to the sandy part of the beach. On the way back up, she climbed the mountain of big pebbles herself and celebrated with one of her classics; “I did it!”.

We met a friend (with a child she would like to get chicken pox) and sat on the beach again for a bit, playing with the sand. It was calm, because Audrey can be quite happy to sit (I mean, sorry Rex, but you tire me out!).

When we walked home, we were passing the shop where I got Rex a little Paw Patrol balloon the day before for his birthday. I stopped outside, bent down to Audrey and whispered “Would you like a balloon like Rexy’s? They have PJ Masks, Peppa Pig… you can choose?”. Audrey got a little grump on and said no. I wheeled her in to look at them anyway and she picked out the Princess Poppy from Trolls. She must have said thank you to the ladies behind the counter about 5 times during the transaction, they were melted of course, like all who meet her.

I pushed her home as she held Princess Poppy high in the sky, singing and chatting all the way. I love to feel smug about how something so simple can bring a child so much joy. As we were nearing home, I tuned into what Audrey was singing and I joined in. And so we were belting out “Doe a deer, a female deeeer!” together in the sunshine before we arrived home for lunch. She ran in and introduced Princess Poppy to her dolls.

Last night when the spots appeared I was a bit stressed out by it, I had work to do, a meeting for Audrey’s EHCP (education, health and care plan) and plans ahead and chicken pox was not part of that plan…. but I took a couple of work calls and sent emails whilst Audrey enjoyed a sandwich and some Cbeebies. As is always the case, a day with one child feels like a breeze once you’ve had more than one!

Without the pox I never would have had such a lovely morning in the sun with her.

IMG_1968

 

Life begins!

I am 40!

I have never lied about my age (well I obviously have, but to be older and go clubbing), my mother raised me to understand that it was pathetic to pretend to be younger because it’s nicer to look younger than your age or indeed look your age, than lie and have people thinking how you look much older.

IMG_1917 (1)

Like all the women that have gone before me, I just don’t feel forty. I remain confused that I have come to a point in my life where I am unquestionably a grown-up, have children that rely on me, a husband, a home, a car, bills to pay… but I could still happily live off a diet of ice cream and repeats of Friends.

I am a hoarder and so, when recently attempting to clear out some remaining boxes of my stuff still stored at my parents’ old house (to be sold this year I hope), I found a fabulous piece of writing by my 11 year old self, describing my life at 40, complete with a drawing!

 

Now, part of this was definitely written with the teachers in mind (I never wanted to be Prime Minister) and clearly most of it is a child’s idea of successes (houses, yachts), but I’m pleased that I know now that my achievements in life are not “things”, it’s not even that I managed to get married and have kids. What I’ve achieved amounts to something very simple: happiness. Of course I don’t mean I’m happy all the time, living a perfect life… and god knows I’d still love a house in America with dogs and a swimming pool (and yes, recycling bins!), but I found the love of my life and we made two amazing children. That’s not too shabby.

And… I’m going  to say it even though it makes me feel sick; I didn’t get cancer. You see, if my mother was here, she’d be able to recount giving birth forty years ago. She was 35. She could tell you the names of the nurses that made her laugh. She could tell you what it was like to be induced so that the baby was out and her cancer treatment could begin. She would survive a further 38 years.

She could also recount how at forty, she had a divorce long behind her, a second husband and four children and (I’m pretty sure) that we all moved from London to Littlehampton on her 40th birthday, arriving in the evening to find the previous owner had taken all the light bulbs. We had to get supplies from the corner shop and we had corned beef sandwiches.

So I guess what I am saying is that I don’t care that I am older. I don’t really feel funny about the significant birthday at all. But I do feel strange that my parents aren’t here with me. It’s absolutely mind-blowing to have reached an age where I remember my mother so clearly – she was always 40 something to me as a kid and she was always old. And I’d like to laugh with her about that.

 

School of hard knocks

Since Audrey started school last September I have had quite a few texts and calls relating to her falling at school. Sometimes she trips, but often than not she is knocked over by other children running or playing nearby.

Yesterday I had one of those calls. I had just calmed Rex from a grumpy car nap wake up and I was preparing lunch when the call came. The school nurse calmly explained there was nothing to worry about, but that Audrey had recently been in to see her, having fallen in the playground, onto her face. Cutting her lip. Hitting her tooth (which doesn’t seem loose, don’t worry). She’s fine now. She also got quite wet so could I bring a coat at pick up? Eek.

I did my bit. The equivalent of smiling and nodding but down the phone (“Mmm, ok, ok”). I hung up. And then I cried. I went through what I assume are cliched phases – upset (cry cry), angry (why wasn’t someone stood right by her?!), acceptance (but they said she was ok) and helplessness (imagining her so far away from my arms, hurt and crying).

I pulled myself back together and sat with Rex to watch Peter bloody Rabbit for the tenth time this week and eat lunch.

If you don’t know; it is torture to hear your child has been hurt. “Some older boys were running past and they knocked her…” Did they notice? Did they care? Did she scream? Sob? Ask for me? Did someone cuddle her? Did she bleed?

Audrey at school
Audrey at school

Yes, torture. I still can’t quite get over how long the school years are. How many more of these calls will I take?

Interestingly I also had a call from Audrey’s speech and language therapist (SALT), to discuss her progress ahead of her education, health and care plan. She expressed how Audrey could benefit from her 1:1 taking a step back to allow her to play with her peers. It made me see more clearly (because at that point I was stupidly wondering why her 1:1 wasn’t basically holding her hand, stood exactly next to her like a bodyguard to prevent her getting knocked over!). There are times to be involved and times to step back. Obviously she can’t really have someone protecting her at all times. Plus she does need to have a full life experience (bumps, bruises and all).

The SALT was full of good things to say about Audrey’s progress and abilities, which was a nice uplifting call to take after the horror injury call!

And when I went to collect Audrey (expecting a gaping wound in her lip), she was fine. A graze on her lip (barely noticeable), still full of beans and thrilled to see me, definitely not scarred for life in any sense.

Yet still I found myself picturing the moment over and over. As I was brushing my teeth that night, I imagined her getting knocked over and a full shudder ran through my body and my stomach flipped. I felt sick. My sweet fragile little girl. I now completely understand why my mother used to describe as as her “precious jewels” (we thought she was such an embarrassing loon).

Audrey drinks her juice from a straw
Audrey getting refreshed after dance class

And so, today was another dance class trial. One where I should drop her off (but they allow you to stay for the first session, so of course I stayed!). But I guess I have to take a step back and start allowing her to get on with things, in the same way I do dropping her off at school.

I watched her today, filled with pride as always. She was like Phoebe Bouffay “I’m totally doing it!” and that was awesome.