baby milestones

Audrey turns nine!

~ Vickywoo ~ Leave a comment

When the birthday comes around, my musings about the past, present and future come too. So here we are. Nine years of Audrey.

My summer baby

I guess I would normally be talking about how far we’ve come since the surprise diagnosis postnatally. Sharing positives, expressing how much we love and appreciate her, but it’s also worth talking about the not-so-super-fantastic things about having a child with needs like Audrey’s.

You see, in the early Instagram and blogging years, I read a few things other T21 mums said about pushing the whole “cute” angle with Down syndrome which can be damaging, and belittle the experiences of those facing the reality of a more grown up child with DS. “It’s no so cute if they’re 18 and still in nappies” etc.

Not everyone’s reality is a “capable” child. But at the time I just felt that, well, my child is cute and loveable and easy going – I can only write and represent my own reality, right?

Whilst that remains true (I can only write about my experiences), I see more and more as Audrey grows, with the challenges we face/will be facing, why those families might feel the “cute” loveable baby that’s “just like other babies” angle is a bit icky.

Because Audrey is fabulous. She’s awesome. A lot of fun, a kind and sweet little girl. But she’s also not. She’s whiny, difficult, stubborn, she can be mean, unkind, naughty and hard work. Well, all kids are complex and can be kind but also mean… Audrey’s ability to be both wonderful and a pain in the butt is clearly something she has in common with neurotypical kids.

But the real “difference” – the real area where I feel like the mother of a child who is disabled/neurodivergent/has additional needs, are those things that separate her without question from her typical peers.

Running. Audrey likes to run down the street ahead of us. She’s pretty good at stopping at the kerb (but that’s not 100% guaranteed), but it’s still very stressful. In crowded areas, she could get lost or knocked over, roads with driveways or entries to parking areas etc are unsafe and it’s especially uncomfortable if she is able to turn a corner miles ahead of me. She loves to be free and she enjoys doing this. If Rex did the same, but I asked him not to, he would stop. Audrey on the other hand, often takes great pleasure in defying me. I can walk down the street with her younger brother and he will hold my hand, listen to me and walk sensibly. A walk down the street with Audrey can be like that (rarely) but more often than not, it’s stressful,

Complaining. This girl can whine. She can use this skill to get what she wants, but if we do stand firm, she’ll just keep doing it even if it is ruining everyone’s experience. She’ll whine if we are watching a TV show she doesn’t want to watch. She’ll whine if the walk we are taking is too long. She’ll whine if she wants to go home from somewhere we’ve just arrived at. She’s rarely shy at saying what she’s thinking, especially if that thought is “I don’t want to do this”.

Stopping. Preferable to the running? I’m unsure. The running fills me with fear, but the stopping brings out a very angry grown up mum side to me. I have very little patience with her when she just sits and refuses to move. It drives me mad. As she gets bigger I wonder how I will move her. Obviously I hope she’ll grow out of it soon.

A recent stop and sit.

Developmental milestones. This is a big one. Where other parents of nine year olds are eyeing up how close they are to an independent kid… that feels a very long way off for us, because it is. We are not even at the stage where we can trust her out of sight in the park (which is fine for her six year old brother), so getting to a stage where she’s maybe walking to a friend’s house around the corner or making us tea – that’s not even close. I know I am going to struggle when parents of typical kids start to discuss how much easier things are, and what it’s like to leave behind those stressful years of doing everything for your child… when I shall remain in it. Still reading bedtime stories, still wiping her bum…

Physical barriers. Audrey finds climbing, uneven ground, stairs and all sorts of fairly basic physical things tricky. She’s always going to have to work that but harder at things like this and it’s a shame because she loves sport, but it’s not always accessible as she can’t keep up with others and is a bit fragile (a good example would be that she loves kicking a ball around, but the reality is, playing actual football she will either never get a look in (too slow) or will get hit/kicked/knocked and be upset and want to stop). She can’t take part in the same clubs an activities that typical kids can without additional support.

Repetition. This kid can repeat and repeat. A good example would be: on Mondays, she has an after school club which means she needs two snacks (one for morning, one for after school). If someone so much as mentions “Monday” Audrey will say what club she does and that she needs two snacks. She’ll mention this on Sunday night, in prep for Monday. She’ll mention it on Monday morning, so I don’t forget. She’ll probably mention it when I collect her. And she’ll no doubt say at some point in the week when we discuss what we are doing Thursday, and she’ll feel the need to say that on Mondays she has two snacks. She is that repetitive. Yes some of it winds me up. But what I always think is – if I can only just about handle it, when I love her to bits, do other people just find her crazily annoying?!?

Societal barriers. There is no escaping that Audrey’s options are not the same as her brother’s. If she wants to do an after school club, I don’t just sign her up and shove her in. And the obstacles will increase as she gets older (for example, when Rex is a teenager, there will be no need for “childcare”, but can the same be said of Audrey in her teenage years?). And once she reaches adulthood, we have a new level to navigate (education, work, living arrangements, independence, life skills). I am not expecting an easy ride.

So there you have it, a little “happy birthday Audrey” with a big helping of real life. Audrey is a complex being! Not just the cute and hilarious kid that makes me proud. She is all of the things. She will need more help than her typical peers, but we are up for it. And nine years on from holding that scrawny little thing that looked like an orang-utan, wondering what I did to deserve a baby with Down’s syndrome, at least now, despite everything, I feel like it had to be something good.

Why I know nothing about potty training

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Potty training was always something I feared; I simply decided that for a child with a learning disability it was worth waiting for her to be older and have a better level of understanding before even attempting such a task… but also I hoped she might just magically figure it out for herself.

Before she was two, Audrey started to shuffle off to corners of the room to poo in her nappy. She often signed for a nappy change. We were attending Whoopsadaisy around this time and Audrey was learning to stand and walk, they encouraged sitting on the potty and subscribed to a different method to me – get them on the potty early and chance a pee here and there, hopefully she’ll get the idea. Well she did a wee on the potty a couple of times by chance, but it didn’t make sense to me work at it so early on.

I guess found it odd to encourage a child that couldn’t walk or stand to use a potty and once she was two and a half, Rex was born and the last thing I wanted to do was potty train! A discussion with a helpful health visitor made me feel better about that – she said “do not try to potty train whilst dealing with a newborn”. So I didn’t.

Time went by. Pull up nappies were used, potty books were read… it felt like we had so much time (since we deferred Audrey’s school start). Yet she started school in nappies.

We had many wee successes, but she was wasn’t consistent. I knew she didn’t need to be in a nappy all day because she could go hours without a wee, but I wasn’t convinced she actually knew when she needed a wee. I had some discussions with healthcare professionals about her being constipated quite a lot and they said this could mean she feels “full” all the time and that it wouldn’t be as easy to identify needing a wee.

With little effort, it wasn’t long before we switched the pull ups to knickers because Audrey decided to hold her wee all day – she would just do a wee  in her nappy in the morning and a wee on the toilet at home before bedtime. Great that she was dry, but unhealthy and stressful for me (worrying about urinary tract infections!) and she also had a couple of accidents at school, wetting herself when falling over.

We’ve had the Christmas break and suddenly Audrey has been really getting it. Asking to go for a wee (even out about) in the morning and afternoon and successfully having a wee. Oh how we celebrated! She’s been back at school over a week and they’ve only seen one wee from her…! And so we are back to where we are started, but at least she is consistently dry.

Well, I have a second child. Did I mention? Ha. He is 3 next month. And… I know nothing about potty training!! Rex requested to wear big boy pants and I thought “Wow, it could be this easy, maybe I don’t need to actually do anything to potty train this one either…” – that was before 3 wee accidents and a quick return to nappies.

He does hide in a corner to poo (in his nappy!), he responds well to rewards, so we could be on our way, however he doesn’t seem to quite “get it” yet and the thought of wee every where just puts me off. Both are in nappies at night time. I thought that was fairly common, but after a chat here and there with other mums, I find many have nailed the night time training too by 3 or 4 years old.

Advice I have heard…

  1. “Don’t leave the house for a week.” Not an option. Rex is feral at home, we’d go mad.
  2. “Take in a potty about 10pm and put the sleepy child on for a nighttime wee.” This maybe in our future, BUT, Audrey is very sleepy and I’m not sure she would wake enough to wee, Rex is the opposite and I fear we’d wake him up and not get him back down.
  3. “Take them to the toilet every 15 minutes.” Well this is practical if we follow advice number 1. But if we want to live a normal life, going outside, doing things… I just don’t know how I would get Rex to the toilet that much.
  4. “Reward them with chocolate/a sticker for every successful toilet visit.” Ahh yes the bribe. This one is interesting as Audrey had a chocolate button for a wee for a while and Rex would get one too (or face his wrath!) and now it’s his turn, he doesn’t actually seem that fussed. I suspect that off the back of Christmas-let’s-have-chocolate-everyday he doesn’t feel he has to work for it.
  5. “Put pants on with a nappy over the top.” We did actually try this one with Audrey for a bit, but she didn’t seem to care that she was wet and she got sore. I think Rex would get confused by the double.
  6. “Let them run around with nothing on their bottom half.” A great one for summertime. Rex would gladly do this, but I’m also sure he’d wee everywhere!

Part of me feels like it really doesn’t matter once both my children “nail” this toileting malarkey, another part of me feels huge pressure to get them there. Both are really great (chatty!) communicators and they are both very aware of the process of toileting (we have an open door policy!), but I am lost in the world of potty training.

This could be the secret of course; do very little and the kids get it anyway. Fingers crossed.

Rex’s words and general hello

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I started writing this post in May (!) and listed Rex’s words;

Mama

Dada

Up

Tumble

Milk

Yeah

No

Down

Ball

Dog

Bird

Audrey (Audrew)

Dum Dum

Teeth

Duggee

Hat

At least half of which were combined with Makaton signs. Yes he’s basically a genius.

Since then he has mastered Mummy and Daddy and basically attempts to repeat any word you throw at him. He’s started singing Baa Baa Black Sheep a lot as well as the circle time song that Audrey used to plague us with a year ago (she still sings it now and again, but wow was that on repeat for a while). It’s November now and he has lots of sentences and is a very chatty young man.

This is a bragging post because I’m proud of him, but also because I want it to be known that it doesn’t really matter. Most of Rex’s milestones have been annoying to be honest, crawling, standing, walking, climbing… it’s just more to worry about. Talking you’d think was all good, however it does give him a chance to say “no” and to ask for things he can’t have. It’s a challenge to explain things to a 16 (now 20) month old.

Anyway, he’s doing well and we’re really pleased about that, but we were and still are, really pleased with how Audrey is progressing.

In fact, I remember my time alone with Audrey as an 18/20 month old as not very different. No walking of course, but I feel like we had our little chats and she made choices, yet I know she wasn’t at the Level Rex is now at. I guess I’m just saying that you can be content with your child and their development even when it’s delayed/tough going.

Life is still very challenging with two small humans, they test me daily, but it’s also wonderful. Their little voices! The chats they have with each other! The cuddles! The fights! The tantrums! Losing my mind! All life is here.

Nursery times 2

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Today I went back to work after 18 months of maternity leave (well, the cold, hard fact is, I was made redundant whilst on maternity leave, but let’s ignore that). 

As I walked home (that’s right, no dodgy commute, just a meander through leafy Hove), I felt so incredibly emotional. I’m a cry baby anyway (I’m sure I’ve mentioned my tearful John Lewis advert moments/sniffles at people dying on Neighbours/sobbing to La La Land?), but this felt like such a mix of feelings. Rex spent an entire day cared for by nursery staff! – You see he’s only spent time with friends and family before, this was a big deal. 

Audrey is a nursery pro – she started at 10 months and save a few tears at pick up (when she realised we left her!), she’s always been an easy-going sort; she took to it like a rubber ducky to kids’ bath time and we never looked back.

Rex has been a bit more clingy in general and at 16 months he’s at a trickier age than she was, but, nursery settling sessions went well. So I wasn’t crazy-nervous about him starting and to be honest second time around you’re much more willing for your kids to fly or fall. But when lunchtime arrived I realised I was keen to check in and hear from nursery that he was having a good time (which he was).

Once the day came to an end I was excited to get home to see my family. It was a good feeling because it is so rare that I get to miss Rex. Audrey has been going to nursery twice a week and on those days I get very excited for her to come home… clearly every day I cannot wait for my husband to get home, but for Rex… well we just don’t get very long breaks from one another to miss each other. What a novelty. I missed him. Amazing.

In many ways I’m one of those mums that complains about how I’m always with my kids and that I have no time for me, but then doesn’t let others look after them. I fear leaving them, it’s a control thing and I’m working on it. Walking down the street alone on a mild summer evening was pretty awesome. I started daydreaming about dates with Ted, maybe going for a run; just time without kids that I haven’t “allowed” myself before.

Getting home (5 minutes before my crew), I really got the “sight for sore eyes” phrase. Wow. My beautiful children arrived home with their Daddy, full of smiles and lots of shouting “Mummy!!”, it was wonderful. Rex was very clingy, but in such a lovely way and I got lots of cuddles and kisses.

For anyone wondering if working (and this is only part time to be clear) after having children is a good idea… thinking; will you feel guilty? Will it be difficult to do something other than wipe bums and faces? Will my children suffer? Well, in my experience, working or just having a regular activity away from your children is a great idea (insert thumbs up emoji here). I just feel like I’ve had a boost and that both my children seemed lovelier because I didn’t spend the day with them! Ha. 

Check them out in pics below – Rexy got for a balloon on his first day and he loves balloons!

We’ve come a long way, babies

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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. 

Typical challenges

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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!

Goodbye 2015

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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

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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.

   
 

Love love love part 2

~ Vickywoo ~ 5 Comments

Just a list of things I love, that Audrey does.

The way she dances to police sirens, lorry reversing beeps and builders banging (basically whenever she mistakes those kind of sounds for music).

The way she obediently hands things to me when I ask her to (how long will that last??).

The way she pats you on the back with her hand when cuddling and says “Ahhh”.

The way she blows kisses with a dramatic flourish.

The way she does something she’s not supposed to (emptying a pack of baby wipes, playing with our shoes or electrical cables) and says “Noooo!” whilst doing it.

The way she sucks her toes.

When she shuffles over to my feet, looks up at me with her arms spread wide and says “Ahhhh” – her way of asking to be picked up.

The way she points in her mouth and says “teeth” to ask to have her teeth brushed.

They way she claps and says “Yeah!!!” With such enthusiasm at the end of a song at music class or after some good drumming at our drumming group.

Pretty much every word she tries to say – her speech and language is coming along so well and I’m so proud of how hard she tries with everything from “sneeze” to “fish”.

Her lion roar.

The fact that at just 2 years old, she already has a favourite book (A Bit Lost) and that I don’t mind reading it 3 times before bed.

Bless you gorgeous Audrey for making everything little thing so loveable!

   
 

Bragging

~ Vickywoo ~ 4 Comments

I wanted to list some stuff Audrey can do, I’m not really bragging, just want to remember how well she’s doing and have an excuse to document small things we may forget.

Don’t get me wrong either, I am fully aware typical children can do all these things and much, much more and that other kids with DS might be ahead of us too, but I am super proud of every little thing Audrey has achieved. The bar was set low when we realised she had Down Syndrome (sad but true), but those low expectations mean BIG celebrations when she achieves. We are a family of clappers and cheerers!

Ok, so signs-wise Audrey knows loads, but these are words she also says whilst signing:

Dada (putting this at the top as it is her most successful word-sign combo!)

Mama 

Banana (narna)

More

Cake (don’t judge! She has rice cakes and pancakes a lot, so associates the word with those things as well as the odd nibble of Mummy’s lemon drizzle!)

Audrey can sign (without saying):

Bibi (Grandma)

Finished

Food

Blueberries

Yoghurt

Milk

Biscuit

Water/drink

Nappy

Where

Cuddle

Hello and goodbye

Baby

Bird

Dog

Flower

Bus

Bath

Sleep

Brush

Glasses

Monkey

Elephant

She also signs the actions to Incy Wincy Spider, Row Row, Twinkle Twinkle, the Wheels on the Bus and a few other songs.

She can high five and fist bump, blow kisses, give tickles and reach out to be picked up.

She knows her feet and toes, her nose and her head.

She can wash her face and hands with a wet wipe (although she is started to just suck on the wet wipe!).

She loves to take off and put on hats and glasses, she also likes putting things in and taking them out of boxes or bags.

She can brush her hair and ours. She can feed herself with a spoon (but doesn’t like to do it!), she mostly eats finger foods.

She can hold a beaker and drink (she stopped having a bottle around 18 months when she decided she no longer wanted it).

Physically, Audrey definitely suffers from low muscle tone. She is extremely flexible and started bum shuffling properly at Easter time. Now she is into anything and everything. She has only just started to show interest in standing and it is a million miles away from the stiff standing typical children attempt. She is pushing onto her feet, with us holding her under her arms and can stand for a second before wobbling out of it. It still feels like a huge step forward, walking is the next big thing to master… the day that I can buy her shoes will be a great day indeed 🙂