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Questions

When you parent a child with a severe communication disorder, you ask yourself a lot of questions:

What caused this? Will she ever talk? Will it always be this way? Why is her behaviour so challenging today? Is she feeling okay? Did someone hurt her? How can I help her? When will she speak?

You buy PECS cards and visual schedule boards, attend SALT workshops, consider buying tech devices to help with communication, and maybe even learn Makaton or another sign language.

You spend hours researching online, worrying out loud with your spouse, and perhaps you pray. You pray for a word. A single word. And when you hear her say it, you rejoice, because maybe she’s already six years old and only just speaking her first word!

Then you pray for a short phrase. You long for it. Verbal communication. And one day she jumps on daddy in bed, shouting, “wake up wake up!” Maybe you cuddle at night and tell her you love her, then hear “I wuv you,” in reply. Your heart bursts with joy.

You pray for yes and no, for please and thank you, and eventually the words come. “No” was much easier for Beth. No was her favourite word for a long time, as she tried everything to avoid the things we needed her to do. But just lately, when she’s in a happy and well-regulated state, I’ve noticed her saying “yes, mama” quite often; tear-jerking for this mama.

Encouraged by the progress, you start to wonder if she will ever ask a question. Then one day she says, “daddy, are you okay? What’s wrong?”

This girl continues to surprise and delight us. One day, she will come home and tell me how her day at school went. One day, she will be able to tell me what activities she did and who she played with.

Until then, I rely on her teachers to communicate through the app. I rely on others to keep her safe throughout the school day. And I pray. She has come so far. What will she surprise us with next?

Original writing by Jennifer Johnson ~ Dedicated to Bethany

Posted on by Jennifer Johnson

Her Storm: An Autism Poem


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

Posted on by Jennifer Johnson

Published!

I have recently begun the journey into independent publishing. It is extremely difficult to get an agent, let alone get a publisher to take you on board. I started a course with Royalty Hero in May which is helping me to learn the process of self publishing as well as marketing skills.

My first book is about matters of faith. It’s available on Kindle now and in paperback from August 5th. Find it here:

https://mybook.to/whybelieve_TT

Posted on by Jennifer Johnson

Is There Hope for a Broken World?

A few days ago, I opened a news app on my phone. I read of a heartbreaking incident in Vancouver, Canada. A man had driven a car at high speed through a crowd of people. There were fatalities and many injuries. Unfortunately, it is not the first incident where someone has used a car as a weapon in this way.

The story weighed upon me, along with the coverage of the wars in Gaza and Ukraine. I also read of the depressing economic forecasts, the problems in the NHS, and other senseless acts of violence. I felt extremely saddened and overwhelmed.

I thought about some troubling situations our family and friends are facing; the struggles of special needs parenting; the difficulties my autistic daughter experiences every day; and all the many things that need doing around the house and the garden despite the lack of time and spare cash to do them.

It’s a lot.

In life there is a lot to overwhelm us and make us weary; things that can even make us hopeless, if we let them.

I felt helpless and hopeless, so I did the only thing I know to do as a Christian—I knelt to pray. I cried to God and told Him that I didn’t understand. I didn’t understand why things had to be so hard. I didn’t understand why people did such wicked things or why He was waiting so long to intervene in this world.

Gently I was reminded that He has intervened once, by sending His only Son to bear our sin debt on the cross. While He walked the earth Jesus repeatedly demonstrated His love and compassion on the poor, the sick, and the oppressed. He entered our broken world and experienced rejection, suffering and pain. He brought healing and hope to people. His teachings made the world a better place than it was before. In love He laid His life down, and in victory He rose from the dead. He also promised to come again.

When? How long? How bad do things have to get?

I have a theological answer to this question: The truth that God is being gracious in giving people more time to repent (turn from their sins to Him).

If I’m honest, at times that answer still doesn’t satisfy me. In Romans 8:18-23 we read about how all creation is groaning and waiting for redemption. That describes how I feel at times in this broken world. I long for a better world; for a new heaven and a new earth, where righteousness reigns.

God has promised that this will happen. I’m impatient for it. I want it now. And yet I must wait.

This morning, I opened my Bible to read The Gospel of John, chapter 11. Christians will be familiar with the passage which tells a true story about a man named Lazarus. He was a good friend of Jesus and had two sisters called Mary and Martha. In the story Lazarus became sick. Jesus was sent for, but He didn’t go to his friends straight away. He had other things He needed to do first, and He had a bigger plan.

When Jesus finally arrived at Bethany, where the family lived, Lazarus had been dead and buried for four days already. Martha came to meet Jesus and cried out to him: “Lord, if you had been here, my brother would not have died.” Jesus responded: “Your brother will rise again.” Martha thought Jesus was speaking of the resurrection in end times, but he wasn’t.

Later in the story, after weeping with Mary and Martha, Jesus asked to be taken to the tomb. Many mourners followed them so there was a crowd of people to witness what happened next. Jesus asked for the stone to be rolled away from the tomb but he was warned there would be a nasty smell. Jesus responded, “Did I not tell you that if you believed you would see the glory of God?”

They rolled the stone away and “he [Jesus] cried out with a loud voice, “Lazarus, come out.” The crowd gasped as Lazarus slowly shuffled out, bound with grave clothes, and his face wrapped with a cloth.

After this sign, many of the Jews who had seen what had happened believed in Jesus. Word came to the Pharisees and from that point they made plans to put him to death. They were jealous of Jesus’ following.

My point in sharing the story is this: Mary and Martha had to wait, in order that a greater miracle might be done. Rather than just going straightaway and healing a sick man (as Jesus had done many times already), He had plans to do something far greater—raise a man from the dead!

Mary and Martha’s job was to trust Jesus when they didn’t understand. That is what Christians must do today, as we wait for Him to show His glory and healing hand again to a broken world.

As I meditated on these Scriptures, my attention was drawn to the lyrics of a hymn which seems appropriate to share below:

I Set My Hope

When this life of trials test my faith,
I set my hope on Jesus,
When the questions come and doubts remain,
I set my hope on Jesus,
For the deepest wounds that time won’t heal,
There’s a joy that runs still deeper,
There’s a truth that’s more than all I feel,
I set my hope on Jesus,

I set my hope on Jesus,
My rock, my only trust,
Who set His heart upon me first,
I set my hope on Jesus,

Though I falter in this war with sin,
I set my hope on Jesus,
When I fail the fight and sink within,
I set my hope on Jesus,
Though the shame would drown me in its sea,
And I dread the waves of justice,
I will cast my life on Calvary,
I set my hope on Jesus,

I set my hope on Jesus,
My rock, my only trust,
Who set His heart upon me first,
I set my hope on Jesus,

Though the world called me to leave my Lord,
I set my hope on Jesus,
Though it offer all its vain rewards,
I set my hope on Jesus,
Though this heart of mine is prone to stray,
Give me grace enough to finish,
‘Til I worship on that final day,
I set my hope on Jesus,

I set my hope on Jesus,
My rock, my only trust,
Who set His heart upon me first,
I set my hope on Jesus,

I set my hope on Jesus,
My rock, my only trust,
Who set His heart upon me first,
I set my hope on Jesus,

I set my hope on Jesus,

Written by Keith Getty, Matt Boswell, and Matt Papa

Posted on by Jennifer Johnson

Value

I sat in the cafe with my friend, a fellow Autism mum whom I had met through a SALT workshop at my daughter’s school. For almost two hours we had been catching up, drinking tea, and talking all about faith, parenting, and different approaches we were trying with our autistic children. Then she stopped and asked me, “how is Lucy doing?” Lucy is my older child. I told her she was doing okay, but her relationship with Bethany has its challenges at times, because of Bethany’s physicality. Beth plays rough— more like a rugby player than a seven-year-old girl!

I’m not sure how the conversation got there, but I found myself telling my friend about the time when my obstetrician offered me an abortion because she was concerned about Lucy’s head size; she thought it was possible the baby may have Down Syndrome. At the time of this conversation, I was approaching full-term and was completely horrified at the suggestion of a termination. I had been talking to my baby and feeling her kicks for weeks. We had named her already. I responded more calmly than I felt inside, telling the doctor that our child was wanted and loved no matter what. We were keeping our baby. My heart filled with sorrow at the thought of other babies having their lives cut short due to a fear of parenting a disabled child. Lucy arrived and although she had some complications after she was born, she is now a healthy and thriving nine-year-old.

A few years later, I found myself having a similar conversation with another doctor. We were discussing our second child’s cleft lip and palate which had been diagnosed via ultrasound. The offer was framed slightly differently, as the excellent care available to cleft babies was emphasized, but abortion was still mentioned as an option if we didn’t wish to continue with the pregnancy.

As a child and a young adult, I knew two people with Down Syndrome. They were some of the kindest and emotionally “in tune” people I have ever met. They had hobbies, things they enjoyed, and families they loved and who loved them. They were cared for and valued despite their disabilities.

Valerie and I left the café and began walking through the garden centre. I stopped for a moment. “Can you imagine if they ever came up with a pregnancy screening test for Autism?” We looked at each other in horror as we thought about the implications of that. How many autistic lives would end before they were even born if a screening test was developed?

We harp on and on about disability rights, children’s rights, and equal rights in our society, but the law only applies those rights to people after they are born? As a Christian, I believe that human life is sacred; created in the image of God. I believe that human life begins in the womb.

According to UK law, abortions are legal up to 24 weeks. However, they are legal under certain circumstances up to birth. These circumstances include a severe foetal abnormality (which apparently includes a cleft lip). If we ascribe equal value to disabled individuals in comparison with non-disabled, why is the law on abortion different? As parents, our job is to protect and love our children no matter what. Surely this protection and love should begin as soon as we discover the pregnancy, regardless of whether the baby has a disability.

We have a tendency in our society to value people based on what they can bring to the table. We value those with great intellect and creativity. We value those who are skilled at building and fixing things. We value those who excel in sports. We value those who have financial acumen and bring wealth to the nation. We value artists and musicians. The government values those who pay taxes; those who are seen to contribute to our country’s prosperity.

However, I believe we all contribute something to our community and our country, whether it be economically or otherwise. We all have roles to play which are important regardless of whether they are financially lucrative for the nation: Stay at home mothers, unpaid carers, disabled people, volunteer workers, the elderly, children and babies are all valuable and have a place in our society. No one should be screened out because of age or disability. We all have a responsibility to take care of one another. I have written before that parenting an autistic child has made me a better mother and a less judgmental and more compassionate person. I would have missed out on that growth as a person had Bethany never been born.

As Lin-Manuel Miranda, a songwriter for the popular Disney movie, Encanto wrote:

“I think it’s time you learn,
You’re more than just your gift…
The miracle is not some magic that you’ve got,
The miracle is you, not some gift, just you,
The miracle is you,
All of you, all of you….”

The truth is that every person has value. We all bring something to the table. We all have something to offer society—even those with disabilities. Society benefits when we value those who are less able or frailer than we are. We are a better society when we compassionately and selflessly care for one another.

Continuing my conversation with Valerie, I told her, “I would do it all again. Despite all the challenges and stress of special needs parenting, I would do it all again. I wouldn’t be without Bethany.” She heartily agreed with me, saying the same about her own autistic son.

Photo of my daughter after she was born with bi-lateral cleft lip and palate.

Posted on by Jennifer Johnson

Snuggles with Mama (written back in 2017)

I’m away from home this week with Lucy, but without John. I’m not sure what is wrong with Lucy but she has been clingy all week. It’s either a new phase, she’s getting sick, or she’s missing her home and her daddy.

Today has been the hardest, to the point that every time I left the room she panicked, and every time I tried to put her down for a nap she cried. It wasn’t the normal kind of fuss-it-out crying. It was sheer “I need you mummy, don’t leave me” crying. At first I was kind of frustrated, because I had things I was hoping to do this afternoon. Then I just gave in and embraced the moment.

We snuggled together for two hours this afternoon while Lucy napped on my chest, and I reminded myself that one day she will grow out of this. One day there will be a final time for her to nap in my arms. I rubbed her little back and stroked her head; trying to forget my own aching back.

Fast forward to bed time and it was the same scenario: Lucy didn’t want me to put her down. I decided to snuggle with her in the chair for twenty minutes before trying to settle her in the travel cot. We cuddled and rubbed noses, and she played with my hair. I whispered to her in the dark and told her that daddy is coming tomorrow.

We sat there in the dark; awake and enjoying the cuddle when all of a sudden Lucy sighed contentedly, and spoke the word, “mama.” My heart melted. It hit me all of a sudden, that it didn’t matter why she needed me. She just needed me today. She needed cuddles with her mama today.

The world to babies and toddlers is very small. We parents are their world. They look to us for everything. Every single thing! The parents of little ones have God-like status to them.

I wondered in the darkness how I’m doing. Am I giving Lucy the right view of God? A God who sends his rain upon the just and the unjust. A God who offers forgiveness of sins to all who will come to him in repentance. A God who delights in mercy. A God who delights in giving, even when we don’t always deserve it.

The eyes of all wait upon him and he gives them their meat in due season. He opens his hand and satisfies the desire of every living thing. May God help me to show my daughter(s) what God is like by my own responses to their needs, their sins, their complaints, and at times, their overwhelming expectations.

Originally written and posted on Facebook in July 2017

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Determination

On Friday afternoon Bethany returned home from school with a certificate for “always being so determined in all her focused tasks.” This certificate made me smile. It nearly made me cry. It was an answer to prayer.

That certificate flooded my brain with memories of Bethany and her determined behaviours all through toddlerhood to now at just over 6.5 years old:

The child who I had to strap into her booster seat in order to brush her teeth and hair.

The child who thrashed about and screamed while I endeavored to brush as gently as possible.

The tornado who spun away from me or arched her back when she didn’t want to be held.

The child who seemed to have superhuman strength to wriggle free when I was holding her to keep her safe.

The child who kicked and writhed through nappy changes and ran away butt naked because she didn’t want to wear a nappy.

The child who fought hair washing with all her might.

The child who lay down on the floor and refused to move during walks and in shops when she’d had enough.

The child who slammed the toilet lid down repeatedly when she refused to toilet train.

My wild child.

My determined child.

The child I could never reason with.

She sees only her own way.

Bethany’s autism exacerbates typical childhood behaviours, making her overwhelmingly difficult to handle at times.

My prayer was that this wild determination would one day be channelled. That it could become a good characteristic and not just an overwhelming frustration for her weary parents.

That prayer is being answered. On Friday she brought home a certificate for her determination in her school work.

That’s my girl. She makes us proud.

Posted on by Jennifer Johnson

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