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. 

Walk the walk

As you’ll have seen, I post a lot of positive stories about Audrey. It’s hard not to. But I want to be honest about something I am finding difficult; the fact that she can’t walk.

When she was born, one of the many things we were prepped for was the difference in when a typical child walks and when a child with DS does, I was pretty confident Audrey wouldn’t be too far behind her peers. I expected she’d be up and running around 2.

Well, we’ve passed her third birthday now and she hasn’t nailed it yet and let me tell you why that sucks…

I feel like she has lost out on a period of her childhood; outdoor activities, soft play, dancing, exploring and running after friends. I know this will come, but her friends have had this kind of childhood since they were 12? 14? 16? 18? months (I’m not even 100% sure when!).

In many ways she’s an easier child for me as a non-walker (less so now we have Rex), although I don’t want her to walk to help me out. I feel like she is being robbed of a typical childhood. It makes her officially “different”. Yes I know she is different, but at this age, kids are just kids. They play with each other at mixed ages and mixed abilities, but not being able walk puts her way behind.

My husband is a bit more laid back about it and I wish I could feel the same. Ultimately I do have to be patient, I can’t let frustration take over because that’s not going to help, but her almost 6 month old brother is rolling and pivoting and getting into things… he will be crawling soon and before we know it – walking too. It seems so crazy how quickly he is getting there and how slowly Audrey is.

But, hey, as I’ve said before, it is best to focus on what your child can do, rather than what they can’t and Audrey’s communication skills have excelled beyond our expectations. She sings so many songs (from Old Macdonald to Queen’s We Are the Champions!), she “reads” so many books and she is really polite – she even says “Thank you Rex” when she has given him a toy. She’s fabulous.

I guess I’ll have to wait for the running and jumping… I’m sure once it comes I’ll be so tired out by her (and Rex), I’ll be wishing for the bum-shuffling days? We shall see.

Here she is working hard at conductive education:



Audrey is 3!

Oops. Audrey turned 3 and I forgot to blog about it. Such is the foggy brain of a sleep-deprived mother of two.

She has had several rounds of “Happy birthday”, at home, Whoopsadaisy, nursery, over the phone from Nanny, at her picnic party in the park… So the happy birthday song has joined her repartoire and I hear it at least once a day. Another brilliant new favourite is “We Are the Champions” – we watched a Jimmy Fallon clip of lots of stars singing it and now Audrey sings the chorus a lot, much to our amusement.

Anyway, Audrey had a fabulous birthday. And here are some pictures to prove it… Oh and Rex tried some solids for the first time on her birthday, he was unsure!

With Mary and Claire, my bestfriends and bridesmaids

Typical challenges

It’s early to acknowledge this (given we only have 3 months of experience with a “typical” child), but I’ve started thinking about how different this journey is going to be in comparison to our experience with Audrey.

We’ve joked our house is Audrey-proof, but not child-proof. Audrey picks up things and hands them to us… “Daddy’s” she says, passing me some headphones, “Mummy’s juice” she says proudly, pointing at my glass of drink (not touching it). She is gentle, she is careful and she can barely reach/climb/have the strength to pull things over. Rex will be very different and it’s scaring me already. 

So funny to feel like parenting a “typical” baby is a pain in the bum. “He’s so sturdy!” we exclaim, with worried looks. “He’ll be an early walker” people tell us, and we exchange terrified glances. We are used to slow-mo growth; example – Rex is nearly 4 months old, he is wearing age 3-6 months (stands to reason) and Audrey wore these clothes around 10 months! It really puts into perspective how small she was. How small she is.

And with that we have an almost 3 year old who can’t walk. She started bum-shuffling at 18 months, all that time we had a “baby”. Rex is going to seem like a fast-forward monster child! I already call him chunk and he’s just a reasonable size, poor kid.

I say “poor kid”, but he’s still a real challenge, so it’s “poor us” really. He wakes a lot, still only sleeps well in the sling for daytime naps and can be generally unhappy just hanging out on his play mat. I am really banking on solids and sitting up changing him, I think he would prefer an upright view and he would enjoy some food, but God help us if that makes no difference! Eek.

I still recognise that people must think it’s nuts that I talk about our experience with Audrey as easy (Down’s Syndrome, oxygen canisters, tests and appointments and worries about her future…), but that Rex is hard. But no one has a baby expecting that much of your time together is stressful and he can make things stressful just being so whiny and needy. 

That aside, he is beautiful and he loves a laugh – I can already see that his sister is going to be such a great friend to him- he looks at her with love already and she makes him smile. They are fabulous children and one day Rexy, one day we will look back and laugh about how difficult you were!

Everything happening right now

Blogging is actually pretty hard for me at the moment. Not least because for the majority of the day I have a baby strapped to me or feeding on me, but mostly because I am dead on my feet with a foggy brain but filled with things to say. Too much to get out and no time to devote to writing about it.

I want to attempt to tell you what it’s like to have a newborn and almost 3-year-old. Except I can’t tell you exactly what it’s like because it’s different for everyone. For every person that says “oh my God yes Rex sounds exactly like my first child – I had to build a fortress of cushions so that I could sleep with the baby propped on me at night!” there’s another person who says having two is a  breeze; the second baby just slept all the time. That second group of people are how we ended up in this mess.

I want to talk about Audrey and how much she has changed. She is literally gaining new skills every day, from crawling and climbing, to more words and confident interaction with her peers. I want to boast about her, talk about how proud we are… But also moan because she’s being stroppy and playing games to get mummy attention.

I want to moan about giving up dairy, because I bloody love cheese and milkshakes and cake and… but I also want to brag about how much it’s helped Rex to settle. He’s a different baby. Oh and even with a dramatic diet change I can find a way to eat crap – Oreos are dairy-free you see and so are dodgy chewy sweets and marshmallows.

And of course Rex settling means I want to finally say – he’s gorgeous! He’s beautiful! Still hard work (babies are), but now we get joy from him and I can see the light at the end of this tunnel – it no longer seems so far. We need to get him sleeping independently, but we’ll crack it eventually.

I want to moan about how much babies age you- I’ve always felt and looked a bit younger than I am. People would generally be surprised by my age. I am definitely 37 now. I have two kids and the dark eye circles to prove it. Eek.

And the mummy guilt, oh the guilt! Maybe I will save that for another post…

So much to cover, all of which I planned to be several long blog posts of my ramblings, but there you have it, I’ve told you in one for now. And I’ve done it all with a baby sleeping in my arms, who has unfortunately woken up because my leg was going dead and I had to move it. Bloody kids.

But wow, Rex is 3 months old!

Here Comes Audrey… Marching Along

Audrey has successfully walked on her own with a walker (both a standard plastic thing at home and a fancy rollater at conductive education)!

Yes, I cut straight to the juicy detail there.  It feels so exciting and terrifying to think she might be close to walking. 

When Audrey was a baby, I looked at the parameters for children with DS walking (from typical age to 5 the book said) and I thought; “well she will walk at typical age or not much later”, because I wanted to be positive, but also I believed in Audrey. I knew she was the greatest kid with Down’s Syndrome I’d ever known, I was so sure that with lots of help she could hit all those milestones as early as possible.

The reality is, even if we had been super hot on physio and/or lots of crazy gadgets for walking/improving muscle tone, Audrey would still be delayed. She has low muscle tone that is hard to deny. Plus she chose to bottom shuffle rather than crawl – this is practically walking, she has her hands free. So in her eyes, no rush!

As I look at this year, the year she will possibly walk independently, I feel a mixture of emotions. I’ve been so desperate to see her run around like her peers. She misses out on park time, outdoor play and even soft play (you need to be able to climb). However I’m worried about how it will change things – eyes needed in the back of my head? A child that’s no longer happy in the buggy or sitting in a high chair? I know this is standard progression and something mums of typical children have dealt with already by 14 months (is that the average walking age??), but Audrey is 3 in July and I still haven’t had to worry about these things. 

She is just starting to realise that Rex is taking up mummy time, she is calling out for me a lot, following me around and is trickier to get settled at night time. Audrey is really growing up. I love being her number 1, but it’s so hard when I can’t devote all my time to her. I hope her improvement in walking, standing and climbing will help give her some independence and help her to need me less, although I suspect I’m in for many months of struggling with how to split my time between demand breastfed baby and demanding toddler!

Nursery times

Audrey has attended nursery since she was 10 months old. When she was born and the surprise of DS popped up, it never crossed my mind that she wouldn’t go to nursery whilst I was at work. Her needs were those of a baby, it didn’t seem like a stretch for a nursery to care for her.

Anyway, it’s funny how the thought of leaving her was so tough, then suddenly it becomes natural and if you can get them in nursery and have a day off to yourself – woo hoo!

I am very pleased by our choice of nursery, it’s a beautiful building with an amazing outside area (including a pirate ship!), they have rabbits, sensory rooms, yoga space… I remember thinking on the tour, ‘she will have so much fun here, more fun than with me’!

Audrey moved up to the over 2s room in October and settled in much easier than I had thought. After all, she can’t walk and she’s still quite small, but it didn’t phase her. Within a week of being there she stopped saying “yes” and started saying “ok”! Those pesky older kids and their slang!!

We were attached to Audrey’s key worker and were really worried about her adjusting to a new person. Thankfully, we didn’t need to worry. Audrey loves Grace, there is a picture of the two of them in her nursery book and when we get home and read about her day, she points at the picture and says and signs “Grace”. It’s actually a funny thing that I was worried about this other person that Audrey would form an attachment to, but now I feel so warm and fuzzy about it all.

At the end of last year they had parents’ evening and I let Ted go because I went last time. Plus he really hasn’t had a good chance to look around inside since the initial tour and I’ve been around several times. 

Well of course she had a glowing report. She is falling within her age range for everything apart from physical development (fair enough, she can’t walk) and these are broad ranges of course, but she is ahead of her typical peers for literacy! Which is amazing. She loves books. She loves them so much she will often push a leaflet on me and make me read it to her. And all the books we read regularly, she reads along, she remembers key words and points and says/signs things on the page (like rabbit or hat). She sits alone turning pages of books chattering away, making up the story… sometimes she has her dolly, Alice, on her lap so she can read to her. It’s so lovely and is definitely something we have nurtured at home, but is supported very well at nursery.

There are a few things we hadn’t really pushed at home that nursery did the ground work on…

Counting: the first time we counted (I think it was Ted carrying her up the stairs), she joined in and we were blown away. She can count to 3 on her own, sometimes higher, but can count to ten if we are counting along. 

Letters: rather surprisingly the other day she took my address book off the coffee table (it has A to Z pictured on the cover) and she said ABC!

Nursery rhymes: we had thought we’d avoid these, but of course once I’d started taking her to music groups, I realised you can’t really avoid children’s music, it does make kids happy. But the most exciting thing was singing a nursery rhyme for the first time and seeing Audrey’s reaction, realising she knows it! It first happened ages ago with “Twinkle Twinkle” – she lit up and started signing. Then I went to a group where they sung about a turtle “Bubble, bubble, bubble… Pop!” and I had no idea what this song was, but Audrey clearly did. Since then, she has just become so good at singing and signing, we can’t help but burst into  spontaneous rounds of ‘Wind the bobbin up’, ‘Row row’ and ‘Sleeping rabbits’. 

We’ve also had lovely moments at pick up, where other parents have told us that their child talks about Audrey a lot. It used to confuse me, Audrey isn’t always that interactive with other kids (she’s getting more so as she gets older), but I would wonder why these kids would be interested in a bum shuffler that’s usually not happy about another child being loud/in her face (she can be quite delicate!). But Audrey is a good sharer, she is gentle and she loves to say hello, blow kisses and offer cuddles, so I guess actually she’s a good playmate option. I’m always so proud to collect her as I know she’ll come out thrilled to see us “Mummy!”, “Daddy!” and will say “Byeee!” to everyone and blow them kisses.

Here’s a selection of some nursery pics they sent home and a Christmas decoration and picture she made (with assistance of course);

Actually, this week she brought home some bread she had helped make! I love nursery.

Goodbye 2015

And so we bid farewell to another year… A year in which Audrey learned to bum-shuffle, speak and stand (with assistance). I finally found a new job, got pregnant and we moved into a house (goodbye cold flat!). 

2016 promises much er, excitement? Is that how you describe the carnage of two children??

We celebrated NYE with friends, working to Thailand’s clock, so that we could say “Happy New Year!” with the kids and put them to bed at a reasonable time. So sensible, but perfect for parents who appreciate sleep. Ted cooked a delicious Thai curry, the kids had a boogie and it was very civilised. I’m afraid I was asleep by 10, but I don’t hanker after the old clubbing days… Let’s face it, NYE is often a let down anyway, but I’m just over it. Of course I like a drink and a dance, I’m just quite happy to be in this family zone at this point in my life (not too young, not too old – just!) and once the kids are older I will unleash my party animal side again I’m sure. I’m hopeful Audrey has my karaoke-fan genes (I’m pretty sure she does!!).

Anyway, Happy New Year to all – the drunk and disorderly, the early to bed Buck’s Fizzers, the clubbers, the snugglers… Cheers to 2016!


Chatty Cathy

Audrey’s speech and language has been progressing amazingly. We are constantly surprised by what she understands, what she attempts to say or sign and how much she remembers.

I guess this is how it is when something has lowered your expectations – a label is stuck on her warning she will be slow at learning, she will be behind, she will have a disadvantage. So when she excels, we are blown away.

Recently, Audrey pointed to the picture of a red bus on her pyjamas and said “bus”. When police sirens go by Audrey says “nee nar”. We go upstairs and Audrey says “upstairs” and for the first time, we’ve heard her saying numbers. 

A sales assistant wearing a baseball cap is chatting to us and Audrey touches her head and says “hat”. Such minor things that make us so proud of her.

One of her consistent signs with no word has been water. A few weeks ago Audrey started saying “ter” along with the sign, which was great, but now she’s progressed to “ter ter”, I guess this sounds minor, but in our world it’s major.

This week was a big one for speech milestones – Audrey said “Audrey” (and signed it too), having spent quite a while saying “Dee” as the closest to her name and then only in reference to watching videos of herself on my phone! We have also been working on 2 or 3 word combinations and have had some success with Audrey (unprompted) saying “more please” and even “more toast please”.

She is also singing words and will pick out the ones she can say, like “star” and “are” or “head” and “toes”.  

When I collected her from nursery yesterday they said she was shouting out names all day. It’s so nice as her peers have being saying “Audrey” for a while and she can now attempt their names too. I do find she is more likely to try the word if there is a sign attached, so we are still using Makaton even has her speech moves forward. Lots of her words would be hard to understand without combining it with a sign – a good example, some thing we do a lot, say and sign a lot, is… Cuddles. Audrey’s word for cuddles has, in recent days, sounded like “Dennis”, which has been amusing, but it’s taking shape and sounding more as it should as each day goes by. But because she says “Dennis” and signs for cuddles, we’ve been able to understand her which is great.

I’ve been so inspired by all the early years teaching that I’ve taken Audrey to, I am now going to undertake some Makaton training in the hope of using it professionally in the future. I love the idea of helping children progress and communicate through sign and play and singing. It’s all been so great for Audrey’s development. And educating adults too – people need to know what a great help signing can be for progressing little ones’ language skills.

Audrey has changed our lives just like any child changes their parents’ lives, but she’s opened up my eyes to many things I would never have been exposed to otherwise and she has made me want to change my career completely, so she has had a pretty dramatic effect on me! I’m so thankful she’s ours.


Friday the Physio Part 2

What a difference a week can make. After our last physio experience at the new Friday sessions, that left me tearful (to say the least), I knew I had to tackle it again and make the best of it…

We set off on the bus and Audrey was full of beans as usual. Waves and kisses, requesting singing. 

We arrived at the group and we kicked off “walking” over to a table of stuffed toy dogs. The ladies were there welcoming and smiling, I explained how hard I found it and kept saying things like “I’m no good at pushing her, which is why I know it’s good to be here, because you are comfortable pushing her” and “Oh she is really going to hate that” – they (rightfully) picked me up on this and explained I needed to be more positive. We are “encouraging” her, not “pushing” and take on each task telling Audrey “this is going to be fun!” Rather than anticipating her hating it!

Actually, I was surprised at myself, because in general, I do think of myself as a positive person.

Today I was thinking about the ability to look on the bright side. I am generally a glass-half-full person without really giving it much thought. I mean, I don’t think of myself as always upbeat and full of smiles… But the fact is; I am a positive person by nature.

When Audrey was born I remember thinking (when wrestling with the news that she had Down’s Syndrome); what would be the worst thing that could have happened – would I rather this baby was dead? And of course the answer was no. I kept reminding myself that we were very lucky she was alive and that was the most important thing. Was this ‘syndrome’ really the end of the world? No.

Then when we had to deal with her coming home on oxygen, I kept reminding myself that we were so lucky she didn’t need any surgery and that her heart was healthy.

And now we have a bum-shuffler who cannot stand unaided, but I’m so very grateful that she is mobile at all and I focus on her other achievements which feel more important. Audrey can’t walk or stand, but she can ask for food and drink and she understands so much of what we say. Communicating is an amazing thing and it really helps us feel connected to her.
Her nature, just the way she is, naturally gives us reason to be positive. Smiles, giggles, kisses and cuddles – for the most part, that’s what our time with Audrey is all about. There’s no need to dwell on blood tests, physio sessions, developmental delays… In fact, I’ve seen many other parents of kids with DS revel in the fact they get a baby for longer. Time flies, but it’s flying a little slower with Audrey.

Onwards and upwards in our physiotherapy (I say this as Daddy and Bibi are taking her this week!!).

This was us taking a toilet selfie after speech and language therapy last week -which went very well by the way. We are working on two word phrases and since the session Audrey has said “more please” and “more toast please” woo hoo!