Toilet Troubles and Continence Concerns

My daughter, Eliza, is autistic, diagnosed at age 3.

She’s struggled with various things during her life so far, one of the main ones being continence.

She was in pull ups until she was 7 because she just didn’t recognise the need or urge to go and use a toilet.

There were also added issues with her not liking small spaces (and let’s face it, toilet areas can be small, especially public ones) as well as fearing sitting on what she visually saw as ‘a hole’.

It just didn’t make sense to her and it caused anxiety.

We read books together, created social stories and she had apps on her iPad about toileting, but it still took a lot of patience, support and understanding and not pushing her too hard, allowing her to process things and go at her own pace.

So how did we do it? Other than the books and apps we had, I also used her favourite dolls and teddies and sat them on the toilet and potty to show her how it all worked.

I had a syringe full of water hidden up my sleeve which I squirted in to the loo so it looked like the doll had done a wee! She thought it was hilarious and it took away some of the anxiety as she could see that nothing scary happened, it was just a wee.

Eliza was getting closer to being confident to use the toilet and her understanding about it all was great, but I chose the time wisely to give her that last gentle nudge.

Christmas! She loves Christmas.

After speaking to our local children’s continence team and telling them my idea, I just went with it and hoped I knew my child as well as I thought I did.

I wrote Eliza a letter from Santa who told her that his wife, Mrs Claus, would be sending Eliza a special package this year.

She was so excited. I purchased a variety of underwear choices in her size, a pink padded toilet seat and put them in a box, added a letter from Mrs Claus that praised Eliza for learning about using the toilet and how Eliza was growing up so fast and that she’d sent Eliza this special delivery to help her with the final step.

Eliza thought this was wonderful and she tried her underwear straight away and has been dry ever since!

A lot of parents seem to panic when their child doesn’t use the toilet by age 3!

Why? Let them develop at their own pace and find their confidence to do these things.

The more pressure you add, the harder it will be.

Remember that some children might have hidden fears of small spaces and other things – lighting, ventilation noises, hand dryers.

And for autistic children, go at their pace and offer as much support and patience as possible.

Allow processing time. Allow mishaps and accidents and don’t get upset by them but give them encouragement and support.

Let them ask questions, watch apps, social stories – whatever works. Not all children will become continent, I’m aware of a lot of friend’s children that are still wearing adult nappies as teenagers and adults.

One of the saddest parts of this is the ignorance, mocking and stares from other people who don’t understand why someone isn’t ‘toilet trained’.

Because they don’t see hidden conditions or invisible disabilities, they simply judge.

Another issue I’ll highlight here comes from a friends Facebook status that I saw today.

Her adult son is autistic and needs care/supervision 24/7. They were out for lunch and she needed the toilet herself.

The disabled toilet was out of action (which she normally uses so she has him with her at all times) so she had no choice but to take him in to the ladies’ toilets with her as he can’t be left alone.

And yes it may not be ideal and you may think it’s inappropriate, but sometimes there really is no choice and we have to keep our children safe, even when we need a wee!!

(This blog was created for https://www.fireflyfriends.com/ originally)

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Self Care….. What’s That?

It took me a while to start writing this blog, I had to really stop and think what I do regarding self-care!

When you have a busy life with work, children, studying, there is little time to do something that is fun and just for you.

It doesn’t have to be something big like going to a spa for the day (Oh a whole day in a spa, that sounds amazing), it could be something like reading a book.

Alone. In peace and quiet. For ten minutes.

One of my biggest flaws as an adult is not looking after myself when it comes to self-care. I’m the first one up in the morning, I get the crazy school run sorted for two children and often haven’t even had breakfast or a drink by 10am.

When I do remember to make a coffee, I drink it cold an hour later after getting lost in laundry piles or hoovering. I used to think that when both children were in school, I’d have so much time on my hands.

How naive I was, I seem to have less time and I have no idea how that works!

As parents, we are so busy doing things for other people that we forget to do anything for ourselves.

And sometimes, by the time we have some free time, we’re exhausted, and we get stuck in the same of cycle of events. It’s important to take time for yourself and you can start off small. I have a 5 year old and a 10 year old.

One of them is autistic and has a very random sleep pattern. Often she is awake till quite late at night meaning I am never really alone at any time.

But as she is 10 and happy to watch a film or play a game, I will go and have a quick bath.

It’s rushed and not overly relaxing but it’s ten minutes where nobody needs me, nobody is talking to and at me and I can just enjoy the silence for the brief time I have.

I try and read in the evenings when I go to bed, if I am not too tired.

It may only be a page a night but it’s my time and my hobby.

When my children are at school I am usually cleaning, shopping or studying but I have recently made myself try new things so that I actually leave the house, see other human beings, have adult conversation and do something fun!

It’s not easy finding things that fit in school hours, as a parent and carer I am often house bound in the evenings, so I feel very lucky with the things I now do.

I start my week with attending a carers music club. We sing, play instruments and have a laugh.

I get to meet other carers and not feel so isolated. And it’s in school hours, bonus.

I end my week doing a local yoga class. It’s helped my anxiety and stress levels so much and I feel so refreshed after each session (and then a little stiff the day after because, well, I’m lacking in fitness and getting older!).

And again it’s in school hours, another bonus.

In between these two events I am so busy with life but having these things to do that are mine, that get me out of the house away from my assignments (mainly away from the ever growing laundry pile) is great.

They help me get through the hectic times and give me things to look forward to as well as pushing my boundaries, giving me confidence and reminding me that I can do self-care and for me, yoga and carers club are the forms my self-care take right now.

(This blog was originally written for https://www.fireflyfriends.com/ )

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Travelling through memories

As a child, I loved going on holidays in the car and every summer we spent the last two weeks of the school holidays in either Norfolk or Lincolnshire at the seaside. My dad drove as mum never learnt to drive, my mum attempted to navigate the map book (back in the no Sat Nav days) and myself and my younger brother would be in the back of the car asleep, listening to music or asking “are we there yet?” after being woken up at 5am for a 6am start to the destination.

My dad’s old Rover. Probably his favourite car. Our trusted steed for most holidays.

Even though we went to almost the same holiday homes every year, the journey was still so exciting. I loved, and still love, looking out at the different views, seeing different towns and cities and observing the different traffic and wondering where their destinations were for that day. I’d always have a notebook in the car and I loved writing down number plates or cars, lorries, buses. I had pages and pages of them. It kept me busy and away from boredom. I’d also carry with me my Walkman cassette player and listen to the few cassettes I owned – T’Pau, Tiffany, New Kids on The Block, The Carpenters…. and often I’d borrow my dad’s country music tapes too (Any youngsters reading this may need to go Google what they are. There was no such thing as an iPod back then). In some ways, the travelling was such a wonderful part of the holiday for me. There was of course the odd occasion where we’d get lost (Once, my dad had followed a car for so many miles that he decided it must be going to the same place we were. So we kept following it…… down a small road…. in to a cemetery….. for someones funeral! We still talk about that story now. In fact we told it in my Dad’s eulogy earlier this month because we all knew it so well and it always makes us smile). Later this month I’m taking Eliza and Noah to Norfolk at half term for a few days away. We have my dad’s ashes to scatter and a few family favourite places to visit.

As an adult, I’m not a great fan of travelling. Anxiety is usually lurking and ready to pounce and any sign of nerves. I can drive, but I prefer not to. Driving is not something I enjoy at all, it’s a huge anxiety trigger for me. But driving means I can take the kids on holiday, to parties, to family visits and various other places. There are times, I feel OK about driving and my confidence is growing. I’d happily say I like and tolerate it at times but it’s very much a love-hate relationship. Although I recently purchased a newer car and for the first time it has lots of techy stuff in that I never ever had before – automatic windscreen wipers, automatic lights, removable and washable seat covers, built in Sat Nav and a rear parking camera! I have to admit, these techy extras have made driving a lot more tolerable and dare I say it, easier.

Both of my children seem to love being in the car as much as I did when I was a child. At ages 5 and 10, it must seem exciting still. Noah likes to look out at the views and he loves seeing various trucks go by. He’ll tell me all about the bridges we cross and what’s under them whether water or more roads. He finds buildings fascinating too. Eliza likes the views but she’d rather occupy herself with a book or an iPad. Or a snooze! If they start to get fidgety or bored or start the “are we there yet?” repetitive question, then we play a game. I ask them “who can find ………. first?” and it might be a red car, an ambulance or even a pigeon that they are looking for. Usually this ends in lots of laughing as if they can’t find whatever we are looking for, they make something up.

A very little me and my precious dad.

Our car is not just a car. It’s a safe space that we’ve often used. When Eliza was anxious or in a meltdown stage, I’d always say to her “Let’s go sit in the car” as it’s lockable, safe, our space. It could be as quiet or as noisy as she wanted it to be. It had her seat, her books, her blanket. It was a place she could calm and recover. She’s always remembered this as recently I received the phone call to say that my dad was dying and that I needed to go see him asap. We were outside a huge supermarket, having just been evacuated for a fire alarm test. I was shaking and numb, couldn’t find the words to speak to the children and attempting to formulate a plan from the hundreds of thoughts whizzing around my brain at that moment. At just 10 years old Eliza stood and watched me for a few seconds and said “Mummy, I think we should go sit in the car”. She knew it was my turn for a safe space and I’m so incredibly proud of and thankful for those words at that moment. Despite my love-hate relationship with driving, my car offers us safety.

Thank you for reading. This was a prompt for our ‘Finish the sentence Friday’ group with ‘Road Tripping’ hosted by the fabulous Kristi from https://findingninee.com/