Why I know nothing about potty training

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.

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The Good Stuff not in the Guidebook

Last week I had a rare full day alone with Audrey (as we are in the school holidays and Rex was at nursery). We went in the car to a lovely play park and cafe by the beach. We picked out our best pebbles and I told her how I used to go to the beach with my mummy and collect the best shells. Audrey has a wonderful way of interacting, she’s supportive and interested; “Oh wow, with your mummy? That’s great!”.

We had a play in the park, we shared scrambled eggs and toast in the cafe. Audrey bossed me around a bit, she bossed around others too (telling a mum to “Calm down” when she was telling off her toddler!), we got back in the car and headed to the supermarket.

She flatly refused to get out of the car when we go there – told me she wanted to stay put. I tried to be as gently as possible in convincing her, but I was getting no where fast. I eventually had to man-handle her out and then distract her with news that the trolley had a ride-along buggy board! Fun! It worked.

At home we were both tired and sat watching a film until I thought it best to head out again (or we’d easily watch TV all afternoon) and we walked to our local park.

None of this is a big deal… but it was a big deal. For Audrey to walk to the park and back and not ask to be carried, for her to interact and play with other children once we got there, for her to stop sensibly to cross the road and hold my hand – things one might take for granted in a typical 5 year old – I do not take for granted. I revel. I praise. Oh wow… she is going to have such an inflated ego!

Because none of this simple stuff was expected, because her default position is a condition that “limits”; I am constantly lifted and amazed by her. As we walked to the park, having a conversation, I thought back to the leaflet we were given when she was born. It’s intention is not negativity, it aims to give you a fair account of what to expect of a child with Down’s syndrome; but they have to cover everything. So the list goes on; language delay, possible hearing problems, possible sight problems, speech may be difficult to understand (if they master speech at all), a long list of health issues, challenging behaviour, the autism spectrum, food problems, thyroid issues…. it goes on and on.

To be honest we hid the leaflet away and didn’t return to it. Sometimes something will get mentioned by a professional “Of course you are aware that children with Down’s syndrome can be prone to…” and I think “No, I wasn’t aware of that” and it doesn’t matter.

I know that knowledge is power. I know it is good to be prepared. I also like that my child leads the way a bit. There was no leaflet with Rex; we just muddled our way through.

I know that for some, that negative list in the leaflet is a reality and they aren’t walking to the park with their 5 year old with DS chatting about flowers and “Oh look that’s where I had my birthday party…”, I know we are so lucky. I feel lucky every time she calls me “Mummy”, every time she holds my hand, holds it to her face and then kisses it.

Our life is not without stress – several bouts of diarrhea for the kids last week, the two of them fighting, stropping, running off, challenging me… but I want to remember all the good stuff. Actually, I want to focus on it! Because how else do I get through all the crazy days with these kids?! My magical, crazy and surprising kids, that have no guidebook.

Rex’s words and general hello

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

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!

A belated hello to 2017!

2016; quite a year.

It started well, with a lovely bit of maternity leave when Audrey napped and on nursery days I could go to the cinema or sit and drink hot chocolate alone. Or nap. Or stare into space. Basically just “be” without a child around.

Then February came; Rex arrived! He turned our lives completely upside down and took me from tired mummy to completely-shattered-and-almost-broken-mummy.

Both my children took their first independent steps! Audrey in October, aged 3 and 3 months, Rex in December aged 10 months and 4 days. 

I’ve was so very low at times last year and sometimes too focussed on that. I am looking forward to feeling more positive, as Rex sleeps more and they both become more independent. 

I have been wishing away the baby days, but please be assured I have also taken time to appreciate Rex’s delicious baby head, his tiny toes, they way he looks at me whilst having his milk, they way he needs a cuddle after a fall… all of his good baby stuff I will remember, I know I’ll miss it, but I am so excited about this summer. Two walking children!

Rex has started saying “Dada” more often and even aimed it at Ted, so we are taking that as his first word. I’m probably more excited that he has signed “milk” and “more”. We love Makaton.

In the meantime, Audrey’s talking is coming along fantastically and she surprises every day with new words and clever phrases. “Audrey’s so happy”, “Rex, what’s wrong? D’you need a duddle?” … as I type this she is playing with a doll saying “You done a wee wee? Do a wee wee in the potty? Say goodbye to everyone”. She’s a star.

Scarily 2017 would be the year Audrey goes to school, but we have made the decision to defer her until next year, giving her extra time to be potty trained, be a strong walker and generally close the gap between her and her peers. We have picked a local mainstream school and fee very strongly that Audrey will thrive there. She loves learning through play, she is a goody-two-shoes and I think she will be popular at primary school.

Anyway, let’s get 2017 out of the way first. I need to find a job so that could lead me down a new path. And once Rex turns a corner and learns a bit about being gentle and sharing, he and Audrey will be great playmates.

Cheers!
My two crazies.

The Wobbles

I spend a lot of my time thinking about Audrey and how much I love her. How great she is. How she has exceeded expectations and challenged my world view and my view of people with Down’s Syndrome. But sometimes I do still have a wobble. I do let negative thoughts creep in and I do worry.

The other week I took Audrey for her thyroid blood test. It’s not a pleasant outing, I know they are going to hurt her (or at least make her uncomfortable) when they take the blood. So it’s a time when I think “it sucks that we need to do this, it sucks that Audrey has Down’s Syndrome”. And so I wobbled. I felt angry about the Down’s Syndrome. 

Whilst we were there, a lady walked by with her teenage daughter. They were both slim, well dressed and they seemed to get on really well. At the time, Audrey was arguing with me over finishing her sandwich. I felt another wobble… that we would never be those two “perfect” mother and daughter types. Such a silly, shallow thought. But I felt sad she wouldn’t be this elegant model-like teenager, making boys heads turn. And as I write this I recognise how unimportant it is that she is “pretty” by typical standards and that boys fancy her. I guess it’s sometimes more that I worry her condition robs her of certain standard life experiences. 

We filled out more forms for disability living allowance, as we can get a higher rate of Audrey isn’t walking. Initially I felt it was pointless – she is walking now. But on further discussion I realised that walking across the living room and then landing on your bum is not walking like a usual 3 and a half year old. She can’t walk down the street to the shops, she can’t walk to the car and climb into her seat. We have made a massive leap forward with the walking, but we still have far to go and that’s annoying!

Sometimes when I’m talking to other parents and the subject turns to when our kids grow up and become difficult teenagers/go to university/have kids/end up looking after us… I feel a little pang inside. I wonder if they are thinking “Yeah, but not Audrey”, I guess I worry about their negative thoughts as much as I worry about my own.

I wanted to post about this to be honest about the fact that I’m not always happy and steady on our path, sometimes I do fret about Audrey’s future. No matter how secure and content I feel about her, it doesn’t change the fact that we face challenges that typical families don’t.

I have to remind myself that nobody really knows what the future holds. No one can be truly secure in what they will become and how their/their children’s lives will pan out. It’s freeing to think that and try to “let go” and continue with the positivity – that Audrey can only get more fabulous. 

Audrey and Rex, December 2016

Great or managed expectations?

I have a question for mothers of children with Down’s Syndrome; is knowledge power? Do you prepare for the worst or simply expect the best?

I follow a lot of families with the extra chromosome in the mix. I see the highs and lows of parenting (full stop). I also see the highs and lows of parenting a child with special needs.

Sometimes I see stuff that scares me. I start analysing Audrey, or worse; start Googling.

Something that has played on my mind recently is “sensory overload”… Children with DS who are unable to cope in noisy/busy environments. Concerts. Parades. Carnivals. Festivals. Stuff that’s fun. 

We’ve had a taste of Audrey reacting negatively to situations like this when she got upset at the (very noisy) Children’s Parade and sometimes she complains when things are “too loud”. The thing is, lots of kids might get upset by a loud parade, but because she has Down’s Syndrome, it’s the condition that gets the blame. 

We went to a pirate birthday party and Audrey was especially clingy and wouldn’t eat her food (even though chocolate, yoghurt and fruit were on offer – her faves!). She only really relaxed when all the kids went outside to hit a piñata and we stayed inside and “Let it Go” started playing. 

And then there’s the family-friendly gig we went to (with ear defenders) and she just stared with her mouth open the whole time. She at least clapped after every song, but for Audrey, our little groover, it was odd. She usually goes mad for live music, but instead she looked more “special needs” than I had ever seen her.

And I feel it’s a double edged sword – everyone either assuming she’s gentle/placid/agreeable (she’s not always like that by the way) because of the Down’s Syndrome….

Or when she is moaning or whining like a typical 3 year old would, I feel worried about people thinking it’s a kid with special needs losing the plot. That they are looking at me and thinking “Poor woman, I bet that kid is hard work”. If she were a typical child, it would just be that Audrey is having a standard tantrum.

Recently it was bonfire night and we went to a friend’s house for fireworks. We did forget the ear defenders, but to be honest, I don’t think they would have made much difference- fireworks set off in a small garden are and absolute assault on the senses! Audrey didn’t like them at all and Rex wasn’t keen either, in fact Audrey’s 2 year old friend came inside to escape too. But one of our friends was very much singling out Audrey as having a problem with them, you could hear from her tone she was suggesting that it’s an issue for Audrey because she has Down’s Syndrome. And that grates to be honest. It’s frustrating that we can’t escape her syndrome sometimes.

I guess I used to assume everything was just Audrey being Audrey, but as time goes on, I’m wondering; should I prepare for stuff that kids with Down’s Syndrome typically encounter? Maybe I should stop fighting it and accept that DS makes her more prone to being a certain way?

I read a post from a local lady, who was upset because she cannot leave the house alone with her 12 year old son (who has DS); it’s too hard – he runs off. It’s dangerous because he runs across busy roads and she can’t keep up. Other mums commented to say that were in the same boat, one even described her son as like “Iron Man” – she can no longer cope with his strength. I just tortured myself by reading the whole thread – kids that throw things, sit down and refuse to move, don’t sleep until the early hours…

I look at Audrey, our gentle, usually careful little girl and cannot imagine her becoming an out of control runner, toy thrower or rubbish sleeper… But I worry about it regardless. Mostly I see a bright future of cuddles and fun with Audrey, but the worry creeps in sometimes. It’s natural and it’s enhanced when a condition gives you clues as to how human might be. 

And as she grows, she learns and she starts pushing boundaries, so I’m getting used to Audrey causing more trouble than she used to and not being that placid agreeable creature that some people assume she is. So I guess I’ll just try to go with the flow and see how she turns out… Much like with her brother, who has no “syndrome” (that we know of), but is proving to be an active and tiring baby to look after! So do I project and assume he’ll always be hard work?!! No! Let’s just see what happens…!