Posted on by Jennifer Johnson · 1 Comment

Gaza

How would you react if your closest neighbours housed terrorists who signed a charter calling for your complete destruction?

How would you react if, on your holiest day of the year, your nation was attacked, innocent people raped, murdered, brutilised, and carted off as hostages?

How would you wage war against terrorists who hide in one of the most densely populated regions in the world?

How would you wage war against terrorists who base themselves in tunnels beneath hospitals and schools and orphanages, effectively using children and sick people as human shields?

How would you rescue hostages who have been held captive in tunnels, their basic human rights to freedom, good nutrition, and basic healthcare completely violated for almost two long years?

What would you do?

The truth is that there have been human rights violations on both sides of this awful war in Gaza.

The truth is that Hamas started the war and Israel is determined it should never happen again.

Two wrongs don’t make a right, but truly, how would you respond?

The truth is Hamas knew how Israel would respond, yet they still attacked.

The truth is that the terrorist organisation Hamas could stop hiding behind human shields.

The truth is that Hamas could unconditionally surrender, return the hostages, and lay down their arms at any time and the war would stop.

The truth is that Hamas doesn’t truly care for it’s ordinary Gazan citizens. Indeed, they stockpile food and energy supplies for their military while innocent Gazan citizens starve.

The truth is Hamas doesn’t want peace with Israel, nor do they want a two state solution. They want Israel’s utter destruction. It’s in their charter.

The truth is that recognising a Palestinian state in Israel is rewarding the October 7 attacks. It is rewarding terrorism. It will be seen as a victory for Hamas.

War is horrible. War is horrific. My heart truly breaks for innocent people on both sides. Most of them just want to live their lives in peace.

I hate that people are suffering and starving and wounded and driven from their homes.

I hate that children are scared and orphaned and have no safe space to call home.

I hate war. I hate terrorism. I hate that people hate each other so much.

I write this because I am disappointed in the one-sided narrative. I am disappointed in the short memory of the media and politicians.

I truly pray for peace in Israel.

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

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

The Middle Finger

For some reason Bethany has never used her index finger to point. She will either gesture with her whole hand or she will point with her middle finger.

Yes, you read that correctly. My seven year old daughter uses “the birdie” gesture to point at things. It happened again today. She asked for an apple as she gave “the birdie” gesture towards the fruit bowl on top of the fridge.

I gently reminded her to use her index finger to point. I don’t want her pointing with her middle finger.  But she doesn’t understand.

She will probably continue to do this into her teens. What if I’m not there to explain?

Google AI defines giving the birdie as “a slang expression that refers to giving someone the middle finger, which is a hand gesture that is generally considered offensive and expresses anger or disrespect. It’s a common way to show disapproval or displeasure.”

I fear the day that she tries to point at something and gets misunderstood.  The people present may not realise she is autistic and doesn’t comprehend rude gestures. And what if she does it to a police officer or something?

I am sure Bethany is not the only autistic person to gesture in a way that can be easily misunderstood, just because of the world that we live in. If only there were no rude gestures! If only I could explain it better. If only she understood!

So I’m telling people now: don’t assume the worst of people. Give people some grace when they upset you. They may have no idea that they did or said something that caused offence. They may be completely oblivious.

So I’m writing this for the record. Please don’t be offended if my daughter gives you “the birdie.” I can assure you, she didn’t mean any offence.

Gestures mean different things in different cultures too. We have to be careful when we travel to other places, lest we accidentally offend others.

Posted on by Jennifer Johnson

This Child of Mine

This child of mine,
Who does not speak except occasionally when she wishes,
And even then, her speech is basic or unclear,
Babble interspersed with occasional bursts of clarity,
She is non-verbal or pre-verbal or somewhere in-between.

This child of mine,
She is autistic and yet she is so much more,
She adores princesses and dresses, colour and laughter, and chocolate cake,
Family celebrations mean the world to her,
Although she gets overwhelmed and hides under the table.

This child of mine,
So full of energy, excitement, frantic frustration, and fiercely loyal love!
Running, climbing, splashing, and chasing the birds even into danger,
She is resolutely determined about her plans,
Which can be a good thing but also at times risky,
She sees only one way.

This child of mine,
Who adores music and loves to dance,
How is it possible that she can sing much more than she can speak?
Her melodies mostly pitch-perfect, although the words are blurred,
Decipherable only to those who know her well.
I think she will be a musician.

This child of mine,
I wonder, does she think in words that she can’t express?
Or does she just choose not to say them?
Does she see the world, her desires, needs, and dreams as pictures?
We have pictures for everything in our house,
Stuck to Velcro strips on the dining room wall,
Our picture exchange communication system.

This child of mine,
Fruit of my womb whom I have fed and cared for all the days of her life,
Watching and waiting for her delayed milestones,
I know her so well, and yet in many ways she is still a mystery to me,
Locked inside her mind,
Struggling to make sense of all that puzzles and overwhelms her.

This child of mine,
She is beginning to break open those locks,
I dare to hope and dream,
I prepare myself for disappointment,
Will she ever say mum?

Originally written by Jennifer Johnson, October 2023

Posted on by Jennifer Johnson

The challenges of non-verbal communication

Just two and a half years ago, Bethany was what I would describe as completely non-verbal. She had very few words and could not say mummy or daddy. She couldn’t ask for a drink. She couldn’t ask for something to eat. She couldn’t tell me if she wanted to do something or go somewhere. She couldn’t tell me she felt sick. She couldn’t tell me if something hurt on her body, or whether someone had hurt her. She couldn’t say yes or no.

Bethany was unable to communicate verbally except through screaming or crying. Her behaviour was baby-like when she was four and five years old. There were many tantrums due to the communication problems.

Bethany has progressed significantly since those days. She can now request a drink or specific items of food. She will ask for a bowl if she wants cereal. She will let me know if she wants the toilet or to go swimming. She can say “ouch” but not necessarily tell me what hurts. She can ask for a hug or for her tablet.

Beth can also copy phrases that she hears us say or things she has heard on TV shows. The problem with this is that she is just echoing things she likes the sound of. She doesn’t always understand what she is saying. This behaviour is echolalia and is common among Gestalt language learners. She can now say “yes” although she normally chooses to say “no.” In fact, she often says “no” when she means yes. This is frustrating for us at times.

The early days were difficult. There was lots of challenging behaviour. The behaviour was the symptom of the communication problems she was experiencing. It was hard to be patient and to constantly play the detective. We were always trying to figure out whether she was hungry, thirsty, hurt, sick, tired, dirty, overwhelmed…. You get the picture. In Autism circles, they call it iceberg theory. The behaviour you see is the iceberg. The causes are under the surface.

As Bethany developed, she became adept at pulling us places to try and show us what she wanted. She eventually learned to gesture and to point (often with her middle finger unfortunately). But it was still difficult to figure out what she was wanting at times.

We bought “now and next” boards and picture cards, so we could have visual schedules to let her know the plan. Sometimes she ran to us with a picture of what she wanted. We used words with the pictures to help her learn. We used physical object references to help her understand the names of the objects. We played Yakka Dee on repeat on BBC iPlayer. We tried to keep our language as simple as possible. At school they used pictures, symbols, Makaton, and speech. I became aware that some gestures Bethany was using at home were Makaton signs. I signed up for a basic Makaton course.

Just over a year ago, Bethany started to say mummy. She was six years old. It was special to me to finally hear it. Last summer she started to say daddy. My husband was beginning to think it would never happen. She can say “Lucy” but seems to have given Lucy the nickname “Shula” instead.

With the increase in Bethany’s verbal abilities, the behavioural meltdowns have reduced significantly. They still happen sometimes, but far less frequently, and sometimes just because we have said “no” to her about something. She can be extremely stroppy when she does not get her way.

We are pleased that Bethany is now able to communicate to a basic standard, but I wonder if she will ever be able to tell me that her throat is sore or that her joints are aching. I wonder if she will ever be able to answer questions or tell us about her day at school.

I wonder if she will ever manage to have a normal conversation or discussion. Will she be able to discuss history or science? Will she ever have political or religious opinions and be able to voice them? Will she ever be able to explain if anyone does anything inappropriate to her? Will she communicate above a basic standard of needs and wants?

I don’t know the answers to these questions. I could choose to live in fear of the answers to these questions.

But I do not choose fear. I choose to hope.

This girl, Bethany, has come so far! And she is a determined girl. I refuse to limit her. May she fulfil all her potential!

Posted on by Jennifer Johnson

Panic!

On the evening of Monday, 11th November, a seventeen-year-old girl was arrested, handcuffed, and put in the back of a police car. There were two officers present, and one sat with her in the back. At some point in the journey, the driver pulled the car over onto the hard shoulder of the M5 motorway, something which should only happen in an emergency. Somehow, the girl, handcuffed, managed to escape the back seat of the car, then ran across the motorway carriageway, climbed over the barrier, and was tragically hit by a car and killed on the other side. Yesterday I read that the girl was autistic.

Questions flooded my mind: Why did the car pull over? Why did the girl run? Why weren’t the security locks in the back of the car switched on? Why was the girl arrested? Was she lost? Did someone try to take advantage of her? Was she scared? These are obviously matters for the police to investigate. Apparently correct procedures may not have been followed and the police force involved have referred themselves to The Independent Office for Police Conduct (IOPC).

I don’t know the answers to these questions, but I have an autistic child and an imagination that works overtime, which can be exhausting and emotionally draining.

I ponder:

A seventeen-year-old girl on a night out. She doesn’t “look” autistic. (What does an autistic person look like anyway?) Something happens on the night out which upsets her. She doesn’t respond calmly. There’s a disturbance while she melts down. She is angry. She is dysregulated.  She has lost control of her ability to reason. She needs someone to co-regulate and support her, to help her calm down. The police run in. They see only disorder and aggression. They arrest her with force, causing her to melt down further. They cuff her and shove her in the back of a car. One of them sits next to her.

She is scared.

She is overwhelmed.

She has no familiar adult with her. Maybe she wants her mum.

She is still dysregulated.

Maybe they shout at her to calm down.

One officer starts driving. Where are they taking her? What’s happening? She doesn’t know. She doesn’t understand.

She panics and melts down further.

It’s fight or flight. She is not in control.

Maybe she becomes aggressive with the officer in the back. Maybe that’s why the car is pulled over.

The car stops.

Fight or flight.

She tries the door. It’s open. She runs, still handcuffed, terrified, with all her mental faculties impaired by panic.

It didn’t end well.

It rarely does.

I’ve seen enough TV documentaries and dramas to know how the police treat “criminals” when they arrest them. They tend to fight force with force.

But perhaps this girl wasn’t a criminal. Perhaps she was just a teenage girl arrested for a misdemeanour. Perhaps she was just an autistic child arrested for having an autistic meltdown.

My heart is scared. This could be my daughter in ten years.

The police have got to do better. The world has got to do better. We must learn how to deal with people in a way that doesn’t exacerbate the situation. We need less bulls in china shops and more training and understanding about how to calm people down and defuse emotionally charged circumstances.

I realise I’m just speculating and imagining the possibilities. But you can see how the situation may have developed.

I am sad for this girl. I grieve for her parents and any siblings. What a tragic loss of life!

I hope there is a thorough investigation. I hope that sincere apologies are made. I hope there is better training in the police force as a result. I hope for a change in culture in the way disabled people are treated in these situations. I hope. And I pray.

Written by Jennifer Johnson

November 29th, 2024

Posted on by Jennifer Johnson

Autism and Toilet-Training

Most people expect to have children. We expect that those children will hit certain milestones at certain times. We expect them to roll over by six months, crawl by a year, walk by eighteen months, be talking by age two, and be fully potty-trained by age four. But what if they don’t meet those milestones?

I never expected to give birth to a child who had cleft lip and palate. I didn’t expect her to have Autistic Spectrum Disorder. And I certainly didn’t expect that I would still be toilet-training her at the age of almost seven years old. And yet here we are. The Spark for Autism website states that “Among 4- to 5-year-olds, 49 percent of autistic children were not toilet-trained, compared with 24 percent of children with developmental delay. By comparison, only 8 percent of typically developing children in that age range were not toilet trained” Spark referenced to a 2022 study which can be found here: https://pubmed.ncbi.nlm.nih.gov/35170572/

There is unfortunately ignorance about this struggle to toilet-train even within the Education sector. I am fortunate that my daughter attends Special School where the staff are aware of all the difficulties that Autistic children have to overcome, but I have a friend whose six-year-old son is in mainstream school but isn’t yet toilet-trained. His teacher doesn’t seem to understand why, and my friend feels a lot of pressure just to get him trained. “If only it was that simple,” she said to me almost in tears. I understood, because it’s a struggle I have experienced.

What are the reasons that autistic children struggle with toilet training? One reason is that autistic people experience an intense “desire for sameness” as well as anxiety around new things. The child is used to wearing nappies. They are used to continuing playing while they do their business in a nappy. It’s comfortable to them and normal. Learning new routines and new ways of doing things causes them intense anxiety, resulting in significant behavioural issues to be managed during the training process.

This was the issue with my daughter. She knew what needed to be done, and she was aware of her bodily functions, but I couldn’t force her to use the toilet until she was ready. She used to slam down the toilet lid and make vehement noises in protest while stomping her feet. She was not going to progress until she felt emotionally ready. She was essentially clinging to toddlerhood, because that’s what she knew. That was what she felt comfortable with. Thankfully she is now making significant progress towards being fully-trained, but that progress only came when she was willing to cooperate with the process.

Another reason autistic children struggle to toilet-train is because of sensory issues they have around using the toilet. They may not like the sound of the flush, the brightness of the light in the bathroom, the feel of the toilet seat, or even the physical act of toileting on a toilet. They may have extreme fear of falling into the toilet. They may have a fear of “different” toilets leading them to use the toilet at home but not at school, or completely refusing to use public toilets.

Sometimes there is a medical reason autistic children struggle with toilet-training. According to the Mayo Clinic “children with autism spectrum disorder (ASD) tend to have more medical issues, including gastrointestinal (GI) symptoms such as abdominal pain, constipation and diarrhea, compared with their peers.” (Autism spectrum disorder and digestive symptoms – Mayo Clinic) Processing these challenges from a sensory perspective is hard for these children, let alone adding the pressure of learning a new skill to the mix.

Sometimes the child is completely unaware or unaffected by their bodily cues. They don’t understand that they need “to go,” or they don’t mind being in a damp or soiled nappy. It just doesn’t affect them.

Communication problems are a significant feature of Autism. Autistic people often struggle to understand language and they often struggle to express themselves in language. Many are not be able to express that they need to use the toilet, and don’t understand the routines they are expected to follow in the bathroom. Visual aids with pictures of routines and PECS (Picture Exchange Communication System) can be very helpful in these situations.

If you have a two-year-old who is already using the potty, or a child who was toilet-trained by the age of four that’s fantastic. But count yourself fortunate. And when you hear of a six or seven-year-old who’s still in nappies, please don’t judge, or assume the parent is incompetent. The chances are, that parent has other children they’ve managed to toilet-train! Parents of children with special needs are desperate for support and encouragement, not judgment. We are honestly doing the best we can to help our children with significant difficulties.

Posted on by Jennifer Johnson

The Autism Cha Cha

When Bethany was two years old, we knew nothing about what I now refer to as the Autism Cha Cha. We saw very few steps forward. It was like Bethany developed to the age of nearly two and then just stopped hitting milestones. We couldn’t engage her with books, or even toys. She couldn’t talk and we could barely get her to respond to us when talking to her. If we did have eye contact we could get her to smile, or sometimes babble or giggle; but getting her to make eye contact was a struggle. The only things that really seemed to engage her fully were music, video, and physical activities such as soft play, the park and puddle jumping.

Bethany was born with cleft lip and palate, so we were getting lots of advice from the Cleft Speech and Language Therapist about ways of engaging her focus and attention that we might model to her how to say different sounds and words. Nothing seemed to get her attention for more than a second..

Bethany’s behaviour deteriorated as she struggled to communicate with us, and we struggled to understand her. Sensory information overwhelmed her ability to process that information as Bethany fought against all the necessary daily rituals of teeth brushing, hair brushing, washing, and eating. At that point it felt like we were going backwards, never mind forwards. She spent her days watching Disney princesses on TV, scattering toys everywhere (but not playing with them), and lining up stickle-brick people on the table.

I didn’t understand what was going on. I didn’t know about Iceberg Theory. I didn’t think about behaviour being communication. I was out of my depth and had no idea how to parent my wild child. I started seeking help from professionals and googling Bethany’s symptoms and behaviours. I finally realised that my child was probably Autistic.

We eventually started getting advice and support. I attended some online workshops and a longer online course by the National Autistic Society. Bethany started attending some day-care play sessions, to give her some play therapy and social interaction. I got a much-needed break. Slowly, we began as a family to make progress.

However, with Autism, you can often take a step forward and then regress a step or two backwards. It’s sort of like a Cha Cha. Just when we start to feel like we’ve figured Bethany out and we’ve got this Autism thing covered, a sudden regression happens to keep us humble. Illness, a change in routine, a new situation: these things can all be difficult for autistic people to handle and sometimes cause a regression.

In the early days there was no progress; then with support and training we started to feel like we were making some progress followed by some regressions. Maybe it was one step forward and one step back. In the past year or two, Bethany has made huge strides in her development. Her “Cha Cha” has been more like two steps forward, one step back and repeat; but the overall trajectory has been forward motion.

It’s not a case though of progress towards becoming neurotypical. Bethany is always going to be Autistic. As her parents we want her to progress towards being able to cope with things that happen daily in our neurotypical world. We want her to be thriving, rather than barely surviving. We don’t want her to live her life shut away from the world, but rather we want her to experience the good things in life. We want her to feel supported and happy even when life at times is a lot harder for her because of her disorder. We want her to be flexible enough to cope with real life changes that she will have no control over. Above all, we want her to be able to communicate her needs, whether by using Makaton, pictures, a technological device, or even hopefully by talking.

As a parent, there is a lot of joy in seeing your children grow up and meeting their milestones. Crawling, the first word, talking, standing, walking, starting school, learning to read, doing sums, making “best” friends, moving up to High School, passing exams, finishing school, driving a car, attending college or university, dating, getting married, having children of their own. For Bethany and many other children with special needs, some of these milestones will never be reached. But we can jolly well celebrate the milestones we do see!

This past week, Bethany started saying, “I coming,” when we call her name. How wonderful that she is responding to her name! Last weekend she figured out how to pedal her bike properly. She regularly sings pitch perfect although the individual words are unclear. She knows her alphabet. She displays aggressive affection through tight squeezing hugs and repeated kisses. She can ask for a drink or food. She can let me know she needs help with her personal hygiene needs. She often say “ank you” (thank you).

Bethany is sometimes able to let me know she feels unwell, by saying “owie” and pointing perhaps to her ear. She moved up a class at Easter due to the progress made since September. On Friday I took her to Tesco, and she coped with me doing a small top-up shop; without running away or lying down on the floor. These are milestones for her. It is a joy to witness them. It’s a joy to see her happy and thriving.

Posted on by Jennifer Johnson

Disability and Faith

People who know me personally know that I am a Christian. By using that term, I mean that I have trusted in Jesus Christ as the promised Messiah, born to die on the cross for our sins. I also believe in the resurrection of his body from the tomb and the gift of eternal life He offers to those who trust in Him.

You may wonder if having a child with a disability has caused my faith in God to deteriorate. I mean, if God is God, why did he allow Bethany to be born with a genetic deletion syndrome? Why did he allow her to be born with a cleft lip and palate? Why did he make her autism so severe that she struggles to talk and to understand other’s speech? Why did he cause sensory processing to be so difficult and even painful for her? Is God really there? And if He is there, is He really good?

He is there. He is good.

I won’t say that I’ve never asked any of those questions. And I won’t say that at times I haven’t struggled with trusting God especially in the hardest moments. But I know that these struggles and these questions have brought me to my knees and driven me closer to the only one who can comfort me and help me get through. These struggles have driven me to the Bible and caused me to claim God’s promises over and over again. They have propelled me into the arms of the Father of mercies and the God of all comfort. They have led me to pray and to witness the answers to those prayers.

Can God heal? I believe he can. Jesus healed many who were ill during his earthly ministry (often in the presence of many witnesses). Does God always heal? Not always in this life, but in eternity, yes. He promises that one day, for His redeemed people there will be no more tears and no more pain.

But why is there pain now?  This is the philosophical question that many have struggled with through the centuries. We all go through hard times and the natural question is, “why me?”

I think there are solid Bible answers to these questions but it is very hard to summarize them. I will attempt this:

Firstly, we have to remember that good and evil exist. God and Satan exist. There is a battle going on. God is good and Satan is evil, but Satan wants to make God look like the bad guy. Satan deceived Eve in Eden and he persists in deception to this day.

Secondly, when God created the world and everything in it, initially, it was good. He gave only one rule, a rule to protect man from the knowledge of good and evil by telling them not to eat fruit from that tree. Man broke that one rule and sin entered in. Evil entered in. The curse entered in. Things began to decay. Thorns and weeds grew up. Man’s body began to decay. Things began to die. (Romans 8 speaks of all creation groaning under the bondage of sin.)

God had fairly warned Adam and Eve what would happen if they disobeyed Him, but He gave them the gift of free will. They chose to disobey one rule and it had eternal consequences for all of God’s creation. A proliferation of rules became necessary but unfortunately we still choose regularly to disobey.That is why it became necessary for God to send a Saviour (“God so loved he world, that he gave his one and only son, that whoever believes in him should not perish but have eternal life” John 3:16).

Thirdly, some of the trials we go through today are the direct result of our own sinful choices. Some examples of this are; taking drugs leading to mental health and physical health problems, crime leading to prison time, immorality leading to STDs. There is a law of sowing and reaping in this world.

Fourthly, we read in Job that God allowed Satan to test Job to see if Job’s faith in God was real. Would it stand the test? Satan projected that Job only served God because God had blessed him. God knew it wasn’t true and ultimately He used the trials to bring Job into a greater personal relationship with Himself.

We have two choices when we face difficulties. As Job’s wife suggested, we could “curse God and die.” Or we could turn to God in faith and plead for His help and mercy.

I have made my choice. The Lord has helped me in the midst of difficulties and questions. He can help you too.

‭Psalm 66:12
“You let men ride over our heads; we went through fire and through water; yet you have brought us out to a place of abundance.” (ESV)

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.

Posted on by Jennifer Johnson

Happy Valley

I never imagined I would have a child who wouldn’t want to hold my hand. A child who would spin wildly at any form of restraint, be it a hand, a leash attached at the wrist, or a backpack with reins. All little children like to hold their parent’s hand, don’t they?

They don’t.

My eldest daughter, Lucy, has always liked to hold my hand and still does at times, although she is getting older now. When she was younger, we used a wrist leash to train her to stay close on walks when she wasn’t holding hands, but she was always willing to hold hands to cross the street or when walking by the road.

Bethany: my wild child, my independent and determined child; has always resisted restraint of any kind. She loves to run free. She sees no danger. Her wrists and hands are very sensitive to a firm grip. Holding her tighter sends her into sensory overload, which can be very challenging to deal with when out and about with all eyes watching. We tried both the wrist leash and the backpack reins for a while, but they just sent her into a spinning, flapping, screeching frenzy.

Bethany is autistic. The things that come naturally for neurotypical children don’t necessarily come naturally for her. We must creatively find what works for her and be extremely patient. For the most part we use what I call “the shepherding technique.” That means we hover close to her (running if she runs). If I see danger I put my arms around her from behind and hold her close. I point out dangers such as moving vehicles. Where possible, we go on walks in large groups, with aunts, uncles, and cousins as Bethany is more motivated to walk and happier to cooperate in a group. We encourage hand holding for crossing roads and sometimes she will do so.

On Saturday we went for a family walk. It was just the four of us out in the countryside away from roads and traffic. We were hunting for bluebells. We didn’t find any as it was still too early for our location, but it was a fine bright day and an enjoyable walk. Bethany chose to hold my hand as we walked uphill through an area wooded with tall pine trees. The hill was steep, and Bethany struggled to carry on, but she held my hand for support and I encouraged her that soon it would not be so steep.

We carried on through a gate into a clear area where last year’s bracken had died back. The sun shone brightly and the birds made their music above us. The path gradually became less steep and then levelled off as we carried on. Still, she held my hand. We found “Happy Valley,” as the locals like to call it, and strolled along for a little while before stopping to give the girls a drink and a snack.

Only a year ago, we walked up the same hill to search for bluebells. A year ago, Bethany found the hill too steep. She cried. She stopped. She refused to walk. She wouldn’t hold hands. In the end, daddy carried her. He was stressed. She was stressed. We were all stressed. We were too late for the best of the bluebells last year and the walk was anything but relaxing.

This year, Bethany walked for the whole time, except when daddy lifted her over a particularly squelchy area of mud. This year, nobody cried. This year, nobody was stressed. We found “Happy Valley,” which was beautifully green but completely bereft of bluebells. We enjoyed the bright blue sky, the bird song, and the sound of the stream gushing along the valley below. It was idyllic. And this year, my heart was singing, because this year, Bethany voluntarily held my hand!

Posted on by Jennifer Johnson

This Child of Mine

This child of mine,
Who does not speak except occasionally when she wishes,
And even then, her speech is basic or unclear,
Babble interspersed with occasional bursts of clarity,
She is non-verbal or pre-verbal or somewhere in-between.

This child of mine,
She is autistic and yet she is so much more,
She adores princesses and dresses, colour and laughter, and chocolate cake,
Family celebrations mean the world to her,
Although she gets overwhelmed and hides under the table.

This child of mine,
So full of energy, excitement, frantic frustration, and fiercely loyal love!
Running, climbing, splashing, and chasing the birds even into danger,
She is resolutely determined about her plans,
Which can be a good thing but also at times risky,
She sees only one way.

This child of mine,
Who adores music and loves to dance,
How is it possible that she can sing much more than she can speak?
Her melodies mostly pitch-perfect, although the words are blurred,
Decipherable only to those who know her well.
I think she will be a musician.

This child of mine,
I wonder, does she think in words that she can’t express?
Or does she just choose not to say them?
Does she see the world, her desires, needs, and dreams as pictures?
We have pictures for everything in our house,
Stuck to Velcro strips on the dining room wall,
Our picture exchange communication system.

This child of mine,
Fruit of my womb whom I have fed and cared for all the days of her life,
Watching and waiting for her delayed milestones,
I know her so well, and yet in many ways she is still a mystery to me,
Locked inside her mind,
Struggling to make sense of all that puzzles and overwhelms her.

This child of mine,
She is beginning to break open those locks,
I dare to hope and dream,
I prepare myself for disappointment,
Will she ever say mum?

Originally written by Jennifer Johnson, October 2023

Posted on by Jennifer Johnson

Diagnosis vs Labels

The day Bethany was diagnosed with Autistic Spectrum Disorder was a day of great relief. It was a day of validation, to know that professionals saw her need. They saw our difficulties as a family, and they agreed with us. To hear those words after 18 months of being told not to worry and “she’ll catch up,” was strangely quite healing.

I already knew in my heart that Bethany was autistic. Her behaviour made it all too clear to me as her primary caregiver. My husband and I were frequently tearing our hair out, metaphorically speaking, as we tried to manage her challenging behaviour and lack of communication skills, especially while out and about in the community.

Yet for all the challenging aspects of Bethany’s Autism, there is also beauty in it. She is completely and utterly her own person, whether dressed as a princess or splashing in puddles with wild abandon. She doesn’t know a stranger and she will sing with all her heart (although you may not understand the words).

You may ask why we bothered to get a diagnosis if we already knew the truth in our hearts. Why label our child? Truth be told, our child would soon be labelled whether we got her diagnosed or not: Naughty, troublemaker, slow, dumb, stupid – these are all labels that are often given to undiagnosed children with special needs. If we remember that all behaviour is communication, and communication reveals a need, then we can see that oftentimes, the children who act up the most are just showing that they need help.

It was obvious to us that Bethany needed help, and as a family we were struggling to cope. We needed help. Getting a diagnosis would open the door to receiving support both for her and for us as parents. It would also provide a more positive label than the ones I previously mentioned.

Diagnosis provided me with opportunities to access training courses that would help us to understand our child and know how better to support her. Diagnosis paved the way for us getting her a Statement of SEN (Special Educational Needs) and ultimately a place in Special School. As a non-verbal child, Bethany would not cope in mainstream school. Since being in Special School, she has thrived. Her vocabulary is steadily increasing and whilst she cannot hold a proper conversation, she can make her needs known and understand more of what we say.

It has often been said that Autism is a reason, not an excuse. With her diagnosis, we have a reason for why Bethany is the way she is. Knowing that reason, we can make reasonable accommodations to support her and we can research strategies to help her to achieve her full potential in life.

To sum up, pursuing a diagnosis is about getting your child labelled correctly, and ultimately it is so you can access the appropriate support.

Posted on by Jennifer Johnson

Not a Superpower


“We’re all a little bit autistic.”

“My nephew has autism and he’s a math whizz.”

“Autism is her superpower.”

“Your daughter is autistic. That must mean she’s extremely intelligent.”

These phrases and others like them are what people say when you tell them your child has Autism. The problem is, in our efforts to be positive about Autism, we unfortunately down-play the hard reality of what life is like for most people with Autism.

According to the National Autistic Society, Autism is “a lifelong developmental disability which affects how people communicate and interact with the world. More than one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK.”

Autism is a spectrum which affects different people in different ways. Some autistic people may be highly intelligent but also highly anxious and struggle socially. Others may be intellectually disabled. Some may be described as “a bit quirky” with interesting mannerisms and stims. Many autistic people find communication extremely challenging. They have trouble understanding social etiquette, and processing information (both verbal and sensory). Many are speech delayed and some may be described as primarily non-verbal. Autistic people are often delayed in toilet training and other areas of development.

The reality for most Autistic people is that they are not just a bit quirky. They are not just highly intelligent. Most people with Autism would not describe it as their superpower. Autism is a lifelong disability that means they struggle with things that come naturally to neuro-typical people. Learning to cope with this disability brings a lot of stress both to autistic individuals and to their families.

My daughter turned six last year. She is not yet toilet trained and shows little interest in learning to use the toilet. She is pre-verbal. Her vocabulary consists of less than one hundred single words and a few token phrases that she has learned to repeat (echolalia). She struggles to regulate her emotions when she is upset and as a result exhibits challenging behaviours. She gets overwhelmed by sensory information and/or by new situations. She has very little awareness of danger. Autism is definitely not her superpower.

On the plus side, Bethany knows what she wants, and she finds ways of communicating it. She is full of personality, and fiercely strong willed. She is extremely passionate about her interests and very affectionate most of the time.

My daughter is not atypical. The majority of people with Autism will struggle in similar ways. As they grow older, they will learn to manage their condition, but they will never grow out of it. Autism will always make life more challenging for them than it is for their neuro-typical peers.

So, lets dispense with the stereotypes. Next time someone tells you they are autistic, ask them how it affects them. Ask them if there’s anything you can do to make things easier for them. Seek to understand that autistic person as an individual and provide whatever support and accommodations you can. If it’s their parent talking, ask how things are going and how you can help, even if it’s just by being someone they can talk to when things get hard and overwhelming.

If we are honest, we all want to be understood. When we are understood, we feel less alone. And when we are not alone, we take courage.


Posted on by Jennifer Johnson

What I needed

“Don’t worry. She’ll get there in the end.” A phrase I heard on repeat through Bethany’s early years. What did they mean by “there?” They meant normal speaking ability, like every other child. They meant all the normal milestones would be achieved, just at a slower developmental pace. But would she ever talk? Would she ever achieve those milestones? How could I not worry when progress seemed so non-existent?

“Don’t worry.” When I shared my concerns with family and friends I was always told not to worry. “Give it time.”

But a mother knows. She knows when her child is struggling and needs help. She knows the strain it puts on her family and her marriage. She knows the extent of the behavioural challenges and the seemingly insurmountable communication problems. She spends the late night hours googling Autism symptoms and ticking the boxes in her mind. She knows the diagnosis even before the Paediatrician gives it, because she is already living with the reality. Her child has challenges and the mother wants to know how to support her. Still people say, “Don’t worry.”

Please don’t say, “don’t worry.” When a mum comes to you with her deepest fears about her child’s developmental problems, don’t tell her not to worry. Don’t say her child will “get there in the end.” Instead, just be there for her, and listen. Ask her what she thinks is wrong. Ask her what her child’s symptoms are. Encourage her to trust her gut instinct and to seek medical advice. That’s what I needed people to tell me.

Unfortunately just hanging on and waiting for your child to “get there in the end” can be detrimental to long term outcomes. Early intervention and support for children with developmental disorders is vital. Early support and training for families with special needs children is just as important.

When you tell a mum (or dad) not to worry, you are telling them their concerns aren’t valid. You are minimising the problem. You make them feel misunderstood and isolated when they need compassion and support. It is not your intention to make them feel that way but unfortunately that is the effect.

Perhaps the better thing to say is, “why are you worried? I’m here to help.” That’s what I needed.

Posted on by Jennifer Johnson · 1 Comment

Your Birth Story

My dear Lucy,

It’s not long until you turn eight years old. I can hardly believe the years have passed so quickly. I sit down in my recliner and close my eyes to remember your story.

I remember being pregnant with you: the daily nausea, the afternoon headaches, the ultrasound appointment where I found out you had pericardial effusion. I remember the prayers offered up for you and the playful kicks that told me you were okay.

I remember the fortnightly trips to the foetal medicine unit, the bloating, the worry, and the every single Friday puking as I tried to hang on working part time towards the end of the pregnancy.

I remember being told to stop work and relax. I remember the final trip to the foetal medicine unit when my blood pressure rocketed and I had a killer headache. I thought I was just starving and sent your daddy to buy me a sandwich. The obstetrician was told and decided to keep me in and give me medicine for hypertension.

That evening she came to see me and said they had scheduled induction for the following day. I could hardly contain my excitement to meet you. I was to be induced on your late grandfather’s birthday. It seemed you were meant to be born on his birthday.

I couldn’t sleep that night. I was nursing a rotten cold, 38 weeks pregnant, and so excited for the induction to happen.

The next day came but we waited until 5pm to be transferred down to the labour and delivery ward for induction. That was a long day. The night was even longer. They connected me to a hormone drip but the contractions wouldn’t get going.

Every muscle in my body ached as I tried to get comfortable on that hard bed. I still had a tickly cough and a stuffy nose. The midwife diffused some eucalyptus oil to help me breathe. We listened to Ludivico Einaudi on repeat to help me relax.

The midwife broke my waters (or so she thought) but still contractions wouldn’t get going. More synthetic hormone was given but still progress was slow. We were shattered. It was late morning on the next day by this point.

The consultant decided to break my waters again, this time successfully. My contractions seemed to go from 20mph to 100mph metaphorically speaking. I was exhausted and scared at this point, unsure I would make it through delivery.

Suddenly the room filled with people. The monitor showed your heart rate was dropping. The obstetrician (a young lady with red hair just like yours) told me we needed to do a C-Section. I had always been terrified of going under the knife, but at that point I was just relieved.

I signed the paperwork while I was high on gas and air. That was bizarre. They rushed us into theatre and quickly prepared me for surgery. Daddy came in dressed in scrubs and sat beside me. A sheet blocked my view of my belly area.

A short while later they pulled you out of my womb. They exclaimed over your full head of red hair but rushed you away to the resusitaire because you had taken one breath, then stopped breathing and were turning blue.

“Is she okay? Is she okay?” John walked over to take a look. With his medical knowledge it must have been hard to take a back seat. Finally, after what felt like an eternity, they said you were breathing. What a relief!

I told John to go with you to the NICU while I was sent to recovery. Briefly, I stroked your little red head, and then I was wheeled away.

I was sent to a ward for recovery. All the other mums had their babies in arms. I knew you were safe but I still missed you. Eventually John came and updated me. You were ventilated but okay. We phoned family and shared our good news.

I sent John home to get some rest but unfortunately the hospital was short staffed. No one was available to take me to see you in NICU until twelve hours after your birth (2am). I put my hands into your incubator and stroked your hands and feet. I let you hear my voice. I sang to you while you held my finger with a fierce grip.

Later, after we had some rest, John and I came to see you again. Within two minutes of us walking into NICU your monitors started beeping and the numbers on the machines hooked up to you started dropping. The staff rushed around you and John took me out of the room. I was extremely scared.

A little later, once you were stabilised, the doctor spoke with us. The pericardial effusion had resolved but you had pulmonary hypertension, which they thought was caused by a heart valve failing to close after birth. The plan was to give you some drugs to help you to relax, in the hope that the heart valve would then close. The doctor was non-committal about whether it would work. He said you could be in NICU for weeks.

We went away and requested prayer from family and friends. We prayed ourselves. God answered positively. A few days later you were moved to the High Dependency Unit instead of NICU, and then a few days after that you were moved to our local hospital. Thankfully you have had no heart complications since!

Lucy, we love you. We love the many versions of you:

We loved the sleeping red headed newborn baby with the serious face.

We loved the bigger, bouncing baby with your giggles and mischievous smiles.

We loved the mess-making, into everything two year old.

We loved the shy, anxious toddler, who cried in new places and barely spoke.

We adored the three year old girl who suddenly started talking and then never stopped unless she was asleep!

We loved it when you said big words slightly wrong. Like the word “beaufital.”

We loved the pre-schooler who threw up when nervous and developed a sudden irrational fear of the sitcom, Dad’s Army.

We loved the confident girl who stepped out of nursery and somehow grew even more confident during the covid lockdown.

We love the girl who works so hard in school and also tries to be a friend to everyone.

We love the girl who likes to tell us jokes, even when they’re not funny.

We love the energetic girl who loves to play and sing and dance.

We love the girl who is a loving, kind, caring sister and always tries to help.

We love our Lucy. We are so very thankful that you survived your traumatic birth.

We are thankful for good medical care, which is a gift from God.

We are thankful for answered prayer.

‭1 Samuel‬ ‭1:27‬ ‭ESV‬
For this child I prayed, and the Lord has granted me my petition that I made to him.

https://bible.com/bible/59/1sa.1.27.ESV

Posted on by Jennifer Johnson

A Better Person

I had it all planned out. Once we got married I was going to have a bunch of babies and raise them to be well-behaved, well-mannered, obedient children. I was determined I would be a good parent and I would raise them in the Christian faith. I even planned to home-educate these hypothetical children. My kids would hit all their milestones, work hard, and do well in school.

Once those children arrived I began to see that things aren’t as simple as I thought. Hypothetical children are not real children and sometimes life throws curve balls that change your plans and change you, growing you in ways that you could never have expected:

A complicated pregnancy. An emergency c-section. A baby in NICU. Hypertension. Sleeplessness. Health problems. Moving far away from your support network because of the cost of housing.

Then, another complicated pregnancy. Home purchase. Bi-lateral cleft lip and palate diagnosis of the baby in the womb. Another c-section. A baby in Special Care.

Adjusting to life with two children. Dealing with chronic pain. Putting your baby through two necessary surgeries and the subsequent challenging recoveries.

Financial challenges. House repairs. A husband working full time and studying for a new qualification.

A global Pandemic. Lockdown. Isolation. A close loved one in hospital. Special needs parenting.

Seeking help for Bethany from professionals. Persuing an Autism diagnosis. Advocacy. Disability. Special School.

Feeling frequently overwhelmed. Realising nothing was in my control. On the cusp of taking anti-depressants but changing my mind due to fear of side effects.

Determining to cling to the promises of God in Scripture.

And praying. Lots and lots of praying down on my knees in tears and deep piles of dirty laundry.

“Jesus, I need you. I can’t do this without you.”

And yet, in the midst of those struggles, there was also so much joy, love, and tenderness. There were so many funny moments. And a lot of growth.

Parenting is so much more than I thought it would be. Over time I have come to value connection with my kids over control. They are unique little people after all, with needs and wants and communication struggles. I can’t expect them to act like little adults.

I have learned to take the help that is offered. I have learned that I can’t do it all (including home-educating). I am learning to trust God with these precious gifts that we call Lucy and Bethany.

I am incredibly thankful for my family and all that has been provided for us. I am thankful for courses I’ve taken to help me to understand my autistic daughter better. I am thankful for advocates who have shared their stories and brought me hope and help in the process. I am thankful for all the intervention and help we have for Bethany.

Being a special needs parent has made me much less judgmental when I see a child who is struggling while out in the community. It has also made me examine the way I respond when my child is triggering me. The result has been happier, connected, peaceful relationships at home.

We have been through some dark, challenging times. But God has brought us through. He has answered prayers. He has provided joy and hope and laughter. He is making me into a better person.

‭Psalm‬ ‭61:1‭-‬3‬ ‭ESV‬
[1] Hear my cry, O God, listen to my prayer; [2] from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, [3] for you have been my refuge, a strong tower against the enemy.

https://bible.com/bible/59/psa.61.1.ESV

Posted on by Jennifer Johnson

Milestones

In less than a month my daughter, Bethany, who has Autistic Spectrum Disorder, will be six years old.

She used to live in her own little world and rarely said a word.

She attends a special school five days a week. She has a 50 minute chaperoned bus ride each way. She is very brave.

Bethany is currently in what is essentially the nursery class. The youngest child in her class is three and attends part time. Bethany was in the same class last year, and whilst she made tremendous progress, she was not ready to move up.

Other kids her age have been through Reception and are now in Year 1 (UK school system). They are reading and doing math sums. They are holding two way conversations and learning jokes. They are also toilet trained.

It stings sometimes, that she is not on a par with her peers, but I am thankful that Bethany is in a place which adapts to her needs so she can learn at her own pace.

At Bethany’s last birthday we finally got her to unwrap her own birthday present and blow out candles on the cake (she blew out mine a few days before).

Last Christmas she actually unwrapped her own presents (in previous years I had to unwrap them for her). She watched The Snowman and Katherine Jenkins: Christmas at the Royal Albert Hall on repeat.

Between January and April this year, Bethany started to thrive. Intensive regular interactions at school, at home, and with her cousins encouraged this growth. At Easter, she won a trophy for her progress. We were so proud of her.

During the summer term, Bethany started adding lots of words to her vocabulary. She is still not capable of carrying a conversation but most of the time she is able to communicate a need or a desire.

At times she will surprise us with a new word. Recently I was dozing in the recliner with Bethany on my lap. She leaned in and nuzzled me before saying, “are you awake?” She has used the word “awake” a few times now in the correct context. We have been amazed by this.

One day, not so long ago, her dad asked her what she wanted. She responded, “cake!” This was her first time verbally answering a question.

Bethany is also engaging in pretend play. Sometimes she will pretend to be asleep by lying down and snoring, before sitting up and saying, “awake.” She likes to get her ten little princesses jumping on the bed, and falling off one by one while we sing the song.

Bethany still adores dresses, princesses, Disney, and music. She is also very interested in playing with and taking lego apart but she is not quite so good at putting it back together again. She is also very determined which can be good and bad.

As a parent, you celebrate every baby step and every milestone. When those moments are delayed they are even sweeter when they finally happen.


We are genuinely thrilled with Bethany’s growth this year. It is beautiful to see her blossoming, especially as we have desired to see it for so long.

I’m really looking forward to hearing her say “mum” and “dad!”