React first, think later,
It’s a familiar dance,
Today, a slight push from an older sibling,
Then, a look of anger,
And an extreme reaction,
A large dice thrown hard in retaliation,
At her sister’s face.
I raised my voice,
“No! That’s naughty!”
“Don’t throw things at people.”
She ran to the lounge,
Slamming the door shut,
And lay down against it,
Blocking us out.
I can hear her sobbing.
My heart is divided,
I need to correct her,
To teach her to be gentle,
But I also long to give comfort,
I need her to know I still love her,
No matter what.
I am her safe place,
But somehow, I must correct.
This balance is hard to find,
When dealing with a fragile, volatile child,
With a severe communication disability,
And behaviours that challenge us,
Her favourite word is “no.”
I speak peace to myself,
Slow down and breathe,
Control yourself and give her time,
Stay home for now,
Let her calm down,
Analyse what happened,
Consider her reaction.
Why did she run away?
Why did she shut us out?
Was she fearful?
Was she hiding in shame for what she did?
Was she simply trying to calm herself down?
Was it all those things?
What do I do now?
I wait.
I wait for the calm after her storm,
Then, I remind her to be gentle,
I remind her not to throw things at people,
Throwing things at people is naughty,
Throwing things at people hurts them,
I reassure her of my love.
Then, I hope and pray,
Pray that she learns to control her temper in time,
I remember the things she used to do,
Like biting,
She rarely bites now,
I remember her progress and hope for further growth,
I will never stop loving her.
Written by Jennifer Johnson, 2025
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!
On Your Birthday Eve
Darling Bethany,
My thoughts are busy tonight as I remember the last four and a half years. I remember discovering I was pregnant with you, the joy of knowing we were adding to our little family, and that Lucy was to have a sibling. I remember the morning sickness, the afternoon headaches, the cheese and pickle cravings and the peanut butter toast. I was so happy and yet oblivious to the challenges which were to come.
At my 20 week anomaly scan I expected to find out your gender, but I had a nagging feeling that something else was going on. I was right. The ultrasound revealed you had a cleft lip and possibly cleft palate. A week or so later at a specialist scan we discovered your cleft lip was bi-lateral. The specialist advised the palate was very likely involved too. The next several weeks were full of apprehension, appointments, and excitement as your due date grew closer.
The obstetrician advised a c-section and I was so ready to hold you in my arms, as well as wanting to be home in time for Lucy’s birthday, so a c-section was scheduled.
The planned c-section was surreal (and so much better than an emergency c-section!) I walked down the corridor to theatre and laid down on the operating table. The staff were all cracking jokes as they prepped me for surgery, and I was cold. It was a “chilled out” experience in many ways. When you were born they did not hand you straight to me for skin to skin cuddles like they do in One Born Every Minute. I’m still mad about that. They said it was too cold (probably right) and took you to be wrapped up. They brought you back to me in recovery for a short cuddle, before taking you to Special Care. We were told they were concerned about your oxygen levels and you needed to be transferred to NICU in a different hospital.
Staff wheeled me up to Special Care in my bed to say goodbye to you. Then you were taken away. That night, in hospital recovering, the LORD gave me complete peace that He was in control. I was led to pray for your swift return to the same hospital as us. The next day, after a night on ventilation, you were returned to Special Care and us.
The next few days were a whirlwind of pumping breast milk, and going between the ward and special care to spend time with you and practice feeding you with the speciality feeding bottles that CLAPA had sent us. You were delivered on a Friday morning, and the following Wednesday we were allowed to take you home. We were all home in time for Lucy’s birthday.
Your first year of life saw the worst Winter Snow Storm (The Beast from the East) witnessed in Wales for many years. You had two major surgeries on your lip and your palate. The second op was an especially difficult recovery and involved a hospital re-admission due to dehydration. During that time God was our refuge and strength. He was a very present help to us during our time of trouble.
You were a lovely baby. Happy and easy for the the most part (except in the late evenings). You were curious and engaged and would sit on my lap to look at books with me. You made eye contact.
Somewhere in your second year of life, that all changed. You didn’t interact with us as much. You didn’t respond to your name. You wouldn’t point and you avoided eye contact. Speech was lacking. The only thing you would give any attention to was DVDs or Music. You played by yourself and not with others, except occasionally your sister.
The health visitor came to assess you and decided to refer you for global development delay. Then the global pandemic hit our shores and the nation went into lockdown. That Spring and Summer was hard. I was doing home learning with your sister and watching you retreat into your own little world. I was worried about you. I cried out to the Lord for help. I rang all the professionals I could to seek support and advice.
In August and September that support came. A trickle at first and then a flood. So many professionals got involved and there was a lot of advice to absorb. I already knew you had Autism, but we needed to get you diagnosed in order to get you the help you would need going forward.
It was getting harder to manage your behaviour and frustrating for you because you couldn’t communicate your needs. We were all struggling. My joint pain was flaring and there seemed to be no let up.
You were awarded funding for an assisted place, two sessions a week at a local nursery to help you along. Then at Christmas 2020 another lockdown happened. You stopped saying “Mama.”
In February, you began regular nursery. I began to feel like I was no longer submerged. I was given things to try at home to help with communication and transitions.
Finally in June, the Autism diagnosis came. I was expecting it, but seeing it in writing was both heavy and relieving. We felt validated. We weren’t going mad. We weren’t bad parents. We were dealing with a disabled child. A beautiful, affectionate, and funny child who had extreme difficulty processing and understanding language. Our precious child who already had to deal with major surgeries as a baby faced the reality of learning to manage a lifelong disability.
Where are we now? You are four years old and currently only able to clearly say one word in the correct context: “Hug.” My darling child, we will give you all the hugs and help you need. Your life has brought us all challenges, but you have brought us great joy too. Your smiles, hugs and kisses are heart melting. Your enthusiasm and laughter are infectious. Your love of music and dancing is precious. Your skill at communicating your desire without speaking is clever. Your love of dresses and the colour purple is adorable. You will never know a stranger as you are so confident and independent. There is a danger in this, but I pray it will serve you well.
In short, my Bethany, we loved you before you were born. We loved when you were born, with your cute wide cleft smile. We loved you through two major surgeries. We loved you before autism was a thought in our heads. We loved you and laughed with you through a global pandemic. And we love you now as our precious autistic daughter. You are valued and loved. You have faced and will face challenges that other children never will. But you are a fighter. You are strong. And you have praying parents and an Almighty God to help you.
Verses:
“God is our refuge and strength, a very present help in trouble. Therefore we will not fear.” Psalm 46:1-2a
“Then Samuel took a stone and set it up… and called it’s name Ebenezer, saying, “Thus far the LORD has helped us.” 1 Samuel 7:12
“Hear my cry, O God; Attend to my prayer. From the end of the earth I will cry to You, When my heart is overwhelmed; Lead me to the rock that is higher than I.” Psalm 61:1-2
Memories, Musings, and Meditations 