milestones

Why I know nothing about potty training

~ Vickywoo ~ Leave a comment

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.

Audrey Starts School!

~ Vickywoo ~ Leave a comment
Audrey holding a picture of me at primary school

I’ve just dropped off a piece of me in a classroom with lots of people I don’t know. The little lady has started reception at primary school.

My daughter is friendly, kind and gentle. She loves imaginative play and reading books. She likes routine. I have no doubt that she will enjoy school, I’m just not sure how much I’ll enjoy her being there!

Anyone who knows me that I will cry at TV programmes, songs that come on the radio and a fleeting thought about someone’s sad situation, so it was a huge surprise that I didn’t cry today dropping Audrey off at her first day of school.

Several factors helped – school drop off is not a romantic, sound-tracked moment.; it’s carnage! We went as a family, with a child in a buggy and one on the loose, we battled through a crowd of legs and shouting and hugging and hellos and goodbyes to get to her class. Also, Audrey was very excited. She managed to (almost) walk all the way there (major achievement) and she jumped, sang and hugged her way down the road, she was genuinely happy to be going to school. It’s tricky to feel the true emotion of a momentous occasion when you are in it. It’s actually easier for me to be tearful anticipating it or reflecting on it.

And so, here I am in a cafe. Ted and Rex are off shopping (typical boys!) and Audrey is in her school classroom, with her teachers.

Of course I can’t help but reflect on 5 years with her. 10 months of maternity leave of just us, followed by a mix of us and nursery, us bump and nursery, us Rex and nursery… and now Audrey has her own thing, she is a schoolgirl!

“They” say it goes in a blink of an eye. I don’t know if  I feel quite like that, but I do feel immensely proud of Audrey and how far we have come from tiny baby on oxygen to confident 5 year old.

As I analyse my feelings, I can see what is creeping in… I felt it during maternity leave with Rex. She had her nursery days and we went to groups but I was suddenly a different mum, I was seemingly a mum of one typical child but that was not my whole identity. She is a part of me, a part of me that I am truly proud of and it can feel very strange to be out and about without her. What a mix of emotions this brings and a new chapter for us all – I have handed in my notice at work and plan to work on freelance writing. I am very lucky to have a supportive husband allowing me to take this leap and it also means that I can be there to drop off and pick up Audrey from school.

Happy September and good luck to everyone in their “firsts”, I love autumn and I’m feeling so very happy that its crisp and sunny outside and the leaves will soon be crunchy under our feet. My favourite time of year.

Let’s Talk About Rex, Baby

~ Vickywoo ~ Leave a comment


Typical kids. No exclamation mark, no tut or eye roll; I’m talking about “normal” children (what I would have called them before learning comfortable language for those of us with “special” children), they just “get on”. They just “do”. It’s amazing and annoying at the same time.

Before 6 months Rex was commando crawling, at 6 months he had mastered proper crawling. At 7 months he could pull to stand. At around 8 months he was cruising the furniture. At 9 months he could easily walk with a walker or even the lightweight toy buggy. At 10 months he took his first independent steps, said “Da Da” at his daddy and signed “milk” before bedtime.

At 10 months Audrey could roll, sit with support and er, not sure if she had mastered anything else by then… She was still in 3-6 months clothing bless her. Ahh, but she was sleeping through! Take that Rex!

I’m proud of both my children. In many ways I’m more proud of Audrey because everything she learns she learns after a lot of hard work. And so it feels like Rex is privileged somehow, which I know is ridiculous. But wow, his walking. He takes a few steps, we celebrate and then he keeps taking those steps. He needs no encouragement and there’s no complaining, because he wants to walk, he is good at it, so he likes doing it.

So here we are at the 12 month mark – Happy Birthday Rexy!

You walk. You’ve already fed yourself with a spoon, signed:

Milk

More

Blueberries

Banana

Audrey

Mummy

Daddy

Finished

Er, I think that’s it, but wow.

You’ve been a challenge (into EVERYTHING),  but you are a beautiful boy and I just know that once you stop pinching and hair pulling, you and Audrey will be best buds.

You can dance like a good ‘un.

You love tickles.

You’ve got 4 teeth on the top and 3 on the bottom.

Actually, you get a very sore bottom. I’m looking into creams… oh and you always play with your winky when I change your nappy… can you tell I’m embarrassing you on purpose now?

You have already hinted at tantrums (not something I’m used to), you don’t like giving up toys or sitting in a still buggy. You don’t like having your face wiped and you get frustrated by toys.

We love you Rex.

Stuff and things 11

~ Vickywoo ~ Leave a comment

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.

Here Comes Audrey… Marching Along

~ Vickywoo ~ Leave a comment

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!

Friday the Physio Part 2

~ Vickywoo ~ Leave a comment

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! 

  

The gap widens…

~ Vickywoo ~ 1 Comment

When Audrey was a newborn, we over-used the phrase “she’s just a baby”. Because at that time, her needs were not very different to those of her peers. She felt different (floppier) and she had a cannula on her face for oxygen, but aside from that… It was still all naps, boob, nappies, bottle, cuddles…

Audrey was actually the first from the NCT crew to roll from her back to her front. At that point I thought she’d probably hit all the milestones within weeks of her baby friends. I was sure we had a baby with Down’s Syndrome that would out-perform any other.

Soon they were all rolling… And then Audrey was a bit behind on sitting up and holding her bottle/feeding herself. Then they were all crawling/bum-shuffling and she’s finally mastered sitting up, but even so, she wasn’t that far behind. But before you know it, they are all walking. They are all saying words; “Mama”, “Bye bye”, “Down”, “Dog”. Their hands are very purposeful… there is a marked difference.

Of course, all of the NCT mums are great. They play down their child’s achievements; “Oh he’s still not that steady on his feet..” or “He says ‘Mama’ for everything”, but bless them, their kiddies are doing what they should be doing and these are exciting milestones. I’m pleased for all of them that they have toddlers (bizarrely I have a toddler, but she doesn’t toddle). I’m (at times) genuinely relieved I don’t have to run after a walker yet. But of course there’s a little ‘pang’ there. I’d love for Audrey to be running around with her friends. I’d love for her to purposefully grab the drum and hit it with conviction (rather than some tentative taps here and there). But at the same time, I feel… Ok. I feel… like Audrey’s slow pace and our expectations mean that every little new thing she does is so exciting.

The gap has widened and that’s a bit scary, but in many respects, it’s not as hard as I thought it would be.

Today I watched Audrey cuddle a teddy, hand it to the speech and language therapist (who would then have a cuddle and pass it back), cuddle it again and so on. I just sat there thinking “she’s so clever!”. In fact, there isn’t a day goes by where I don’t think “she’s so clever”. She amazes me everyday.

I have taken her to a music class these past two weeks and sat there, filled with pride. She just loves music so much and she dances so creatively and enthusiastically. I basically sit there wanting everyone to look at my daughter, because she is the greatest dancer.

We also go to a weekly special needs group (where she cuddled the teddy) and Audrey works on development. She achieves something new every week. She always makes me proud. This week, she finally made a choice. They always offer the kiddies two toys and make them choose – Audrey would always either shake her head and refuse or just sit there blankly. Finally, this week she selected the maracas over the sparkly stick and then boy oh boy did she shake those maracas!!

I still kind of have to pinch myself about all this… that baby that popped out as a complete surprise… all those worries… all the negative thoughts… she makes me so happy and so proud. And every day I tell her how much I love her and how clever she is. Amazing.

IMG_5061

IMG_5018

Too much information?

~ Vickywoo ~ 2 Comments

Instagram has become an obsession… What was once a place for my food photos has now become an Audrey micro-blog and a place where I am part of a DS community. It’s an amazing place for inspiration… Little ones walking, talking, starting school… positive images of families going about their life with an extra chromosome in the mix.

But there are downsides to following these other mummies/families… Operations, sleep studies, hospital visits, illness, delays in development, disappointment… We are all sharing our lives and this includes the downs as well as the ups… But the thing is, we are all very different. Kids with DS may share characteristics, but they are all still individuals and have varying needs.

For the most part I have avoided medical information on Down’s Syndrome. I pick up snippets of info from other people, but on the whole it’s not fun to be worrying about Audrey going back on oxygen, having an op to remove her adenoids or losing her hearing. Unfortunately, following these other T21 families has exposed me to some of the possible issues Audrey might face and have also led me down that unhealthy unhappy path… Comparison.

I’ve seen on more than one occasion this quote posted on IG:

“Comparison is the thief of joy”

And indeed it is.

It’s fine seeing Audrey’s ‘typical baby’ friends walking, talking, growing… But what about a baby with DS very close to Audrey’s age doing things Audrey can’t do? It’s tougher to be relaxed, I guess because we all have high hopes for our kids, even if from the outset they have something about them that prepares us for delays. Our expectations for Audrey are that she will be the best that she can be (and believe me, I don’t mean we’ll be pushing her and forcing her), we just expect her to be the best downsie ever! So when you’re following the progress of another little one and they are signing/crawling/holding their bottle and your child isn’t… It’s hard not to feel… Deflated.

The best advice I can give to anyone else in this situation is to focus on the positive and, as Wayne would say; “Live in the now!”.

Audrey is currently getting on just fine, with no major health issues. She sits up all day, she waves, claps, rocks to music, feeds herself finger food, attempts to hold her water cup, nods when we nod, plays peekaboo, babbles all sorts, hey, when I start to list things she can do a lot! Phew!

IMG_4148.JPG

Daddy and Audrey x