Posted on by Jennifer Johnson

Waiting in Line

Young carers learn a lot from their experiences. They learn how to help their parents. They learn how to distract their siblings in difficult moments. Sometimes, they just know what to do.

Below is a story about something that happened several months ago, possibly even last year. I have been meaning to blog about it for a while so here goes!

Lucy and I were waiting in the pharmacy to collect medication. I was tired and the queue moved slowly. Everyone in front of us seemed to have a problem to solve. Some more people had followed us in and the queue was long.

The door opened again and a young woman walked in with a small girl who looked about four years old. I saw the mum sigh and her eyes roll upwards as she realised how long the queue was.

The little girl was very lively. She began exploring the shelves of the pharmacy as young children do. She seemed oblivious to her mother who was telling her to leave things alone and encouraging her to go and sit down in the waiting area. The girl was in a world of her own, similar to the way Bethany used to be.

The little girl noticed a gap under the counter between shelves and surged towards it. She sat down and squeezed in. The mum looked mortified as she went over to try and extract her. Redirect, distract, redirect. The mum was working hard to try and contain her child whilst the queue just kept growing. I could see her becoming increasingly frustrated which was understandable.

I tried not to stare as my mind wandered back a few years to another pharmacy in another town. It was during the Pandemic when we were required to queue two metres apart. My autistic daughter was about four years old and we were queueing to collect my prescription. She was having a hard time waiting in the queue and I was having a hard time managing her.

That particular pharmacy had just had a refit. They didn’t have a physical barrier to keep customers from going behind the counter. It was just an “understood” rule. Except Bethany didn’t understand. On that day, I was the mum whose “naughty” child ran behind the counter and didn’t listen to her mum while people in the queue stared and silently judged.

Except my child wasn’t being naughty. She is autistic. She just didn’t understand the social rules. She was curious and exploring the store. She was and still is extremely active. I was so embarrassed, frustrated and overwhelmed. After that day I was determined not to take Bethany to the pharmacy again until she was capable of waiting and following “the rules.”

I stirred from my memory and looked over at the mum, trying to communicate compassion and understanding with my eyes as her daughter continued busily exploring the pharmacy. I wondered how I could help. Then my daughter made me proud.

Lucy walked over to the little girl and started talking to her, making friends with her. She knew from experience with Bethany that the other child just needed a distraction. I saw the mum relax a little and smile.

The girls went over to the waiting area and continued talking. They exchanged names, ages, talked about school and so on.

I was proud. My daughter was helping a stranger out. She saw a mum who needed help and knew how to help her.

It was finally my turn to collect my prescription. As I took my turn I could hear the children still talking by the waiting area. I smiled, pleased that Lucy had the confidence to make friends with strangers.

The queue was moving quicker now. I could see the young woman relaxing a bit. I told Lucy it was time to say goodbye and smiled at the small girl. As we walked out her mum caught my eye and mouthed the words, “thank you” to me. I smiled and nodded.

But really, I didn’t do anything at all to help. It was all Lucy, a young carer, who knew how to help a struggling mum with a challenging situation. Well done, Lucy!

Posted on by Jennifer Johnson

Pride and Progress

Several weeks ago, I was downstairs loading the dishwasher when I heard somewhat of a commotion upstairs. There was movement in the bathroom above me and I could hear the slamming of the toilet seat. I called up the stairs. “Is everything alright up there, Lucy?” A reply came back: “Yes mummy. It’s okay. I just took Bethany to the toilet and changed her nappy.”

“What?”

“I changed her nappy,” Lucy said with a small giggle. Her beaming face appeared at the top of the stairs. “I thought I would do it for you and save you a job.” I smiled back at her. “Aww. You didn’t have to do that, but thank you.”

How should you feel when your eight year old tells you she’s just changed the nappy of her six year old sister? I mean, it’s not really her job is it. It shouldn’t be her job. She should be enjoying her childhood, not changing her sister’s nappy. But she did it, of her own volition, because she is a young carer.

Young carers grow up in a different world to their peers. They experience different pressures within the home environment, and at times they miss out on experiences and activities because their sibling can’t cope in certain situations. I feel bad that Lucy misses out, but yet I am thankful that good things also come from her being a young carer.

As a young carer, Lucy is learning to put other people before herself. She is learning to be a kind helper. She is learning to empathise with the struggles and limitations of others and to appreciate the blessings that many people take for granted.

Last weekend a small fair came to town. John and I carefully considered what to do. We wanted Lucy to have a chance to go to a fair. She hadn’t been to one since our May holiday in 2021. On that day Bethany was strapped into her buggy after a major meltdown and she was oblivious to the fair, but Lucy was able to enjoy a few rides. I suggested that either we all went to the fair, to see if Bethany would cope, or that one of us should take Lucy.

We decided to be brave and see how Bethany would manage with the noise, the excitement, the rides, the queueing, and the turntaking. (Queuing, turntaking, and sharing are all skills she has been learning at special school.) When we told Lucy we were going to the fair, her face lit up. “I can’t believe it,” she squealed excitedly. “I didn’t think we would get to go.”

So, on Saturday after lunch, we walked to the fair. First up, was the aeroplane ride. They seemed to enjoy it and when the ride finished, Bethany understood that her turn was over and got off without any trouble at all! Next, they went on a car ride, which went around in a rectangular circuit, flinging the cars around the corners. We had to wait and queue for that one, but again, Bethany seemed to understand.

Daddy tried to get Bethany and Lucy to share a car, but as soon as Lucy got in, Bethany got out and went to get in her own car. I guess she wanted space! Once again, when the ride finished, Bethany understood her turn was over. (A few years ago, I let her ride a carousel in Reading town centre, and I had a terrible time trying to get her off the ride at the end.)

Lucy wanted to ride the carousel next. She’s really into ponies and unicorns at the moment, so she wanted to ride the pony. Bethany, predictably, got into the bus driver’s seat. Once again, at the end of the ride, Bethany understood her turn was over. I couldn’t believe how well things were going.

At the far end of the fair there was a huge inflatable slide. We decided to let them play on that and then leave the fair as we were running out of cash. They climbed the steps to the top and Lucy came sliding down straight away. Bethany stalled at the top. The slide was steeper than it looked and she was scared. She sat at the top for around five minutes, crying out every now and then. I asked if i could go to her, but the ride operator said no because of health and safety. I was annoyed. We asked Lucy to try and encourage Bethany to slide down. Lucy was not successful.

Finally, Bethany psyched herself up, and managed to slide down. Her fear left her and she managed two more turns before their time was up. Once again, she seemed to understand that her turn was over and came to put her shoes back on without any trouble.

Bethany was getting tired now and tearing her away from the fair was difficult. We strapped her in her mobility buggy as she was melting down. Then Lucy reminded me, “give her an apple from your bag, mummy.”

“Great idea, Lucy. I forgot about that!” I handed Bethany an apple and a drink to distract her and she gradually calmed down. We walked to the Rock Park, which is a quiet wooded walking area with a river running through it. The calming sounds of the water below and the birds overhead were a balm in contrast to the noisy fairground. Bethany was calmed and I was feeling grateful.

We just managed a family outing to the fair! Despite autism and the challenges it throws at us, this time, neither of my girls missed out.

Bethany can now queue for a limited time. She understands how to take turns, and share; all skills that she has  worked hard to understand and achieve. I am so proud of her.

And Lucy, she’s my little helper. Whether by randomly changing a nappy, tidying up her sister’s toys, or by reminding me of snacks in my bag for a necessary distraction, she’s my helper. She’s a young carer and I am very proud of her.

And thank you John, for taking us through the Rock Park to calm our senses after the noisy fair. You knew exactly what was needed to calm us all down.