React first, think later,
It’s a familiar dance,
Today, a slight push from an older sibling,
Then, a look of anger,
And an extreme reaction,
A large dice thrown hard in retaliation,
At her sister’s face.
I raised my voice,
“No! That’s naughty!”
“Don’t throw things at people.”
She ran to the lounge,
Slamming the door shut,
And lay down against it,
Blocking us out.
I can hear her sobbing.
My heart is divided,
I need to correct her,
To teach her to be gentle,
But I also long to give comfort,
I need her to know I still love her,
No matter what.
I am her safe place,
But somehow, I must correct.
This balance is hard to find,
When dealing with a fragile, volatile child,
With a severe communication disability,
And behaviours that challenge us,
Her favourite word is “no.”
I speak peace to myself,
Slow down and breathe,
Control yourself and give her time,
Stay home for now,
Let her calm down,
Analyse what happened,
Consider her reaction.
Why did she run away?
Why did she shut us out?
Was she fearful?
Was she hiding in shame for what she did?
Was she simply trying to calm herself down?
Was it all those things?
What do I do now?
I wait.
I wait for the calm after her storm,
Then, I remind her to be gentle,
I remind her not to throw things at people,
Throwing things at people is naughty,
Throwing things at people hurts them,
I reassure her of my love.
Then, I hope and pray,
Pray that she learns to control her temper in time,
I remember the things she used to do,
Like biting,
She rarely bites now,
I remember her progress and hope for further growth,
I will never stop loving her.
Written by Jennifer Johnson, 2025
Waiting in Line
Young carers learn a lot from their experiences. They learn how to help their parents. They learn how to distract their siblings in difficult moments. Sometimes, they just know what to do.
Below is a story about something that happened several months ago, possibly even last year. I have been meaning to blog about it for a while so here goes!
Lucy and I were waiting in the pharmacy to collect medication. I was tired and the queue moved slowly. Everyone in front of us seemed to have a problem to solve. Some more people had followed us in and the queue was long.
The door opened again and a young woman walked in with a small girl who looked about four years old. I saw the mum sigh and her eyes roll upwards as she realised how long the queue was.
The little girl was very lively. She began exploring the shelves of the pharmacy as young children do. She seemed oblivious to her mother who was telling her to leave things alone and encouraging her to go and sit down in the waiting area. The girl was in a world of her own, similar to the way Bethany used to be.
The little girl noticed a gap under the counter between shelves and surged towards it. She sat down and squeezed in. The mum looked mortified as she went over to try and extract her. Redirect, distract, redirect. The mum was working hard to try and contain her child whilst the queue just kept growing. I could see her becoming increasingly frustrated which was understandable.
I tried not to stare as my mind wandered back a few years to another pharmacy in another town. It was during the Pandemic when we were required to queue two metres apart. My autistic daughter was about four years old and we were queueing to collect my prescription. She was having a hard time waiting in the queue and I was having a hard time managing her.
That particular pharmacy had just had a refit. They didn’t have a physical barrier to keep customers from going behind the counter. It was just an “understood” rule. Except Bethany didn’t understand. On that day, I was the mum whose “naughty” child ran behind the counter and didn’t listen to her mum while people in the queue stared and silently judged.
Except my child wasn’t being naughty. She is autistic. She just didn’t understand the social rules. She was curious and exploring the store. She was and still is extremely active. I was so embarrassed, frustrated and overwhelmed. After that day I was determined not to take Bethany to the pharmacy again until she was capable of waiting and following “the rules.”
I stirred from my memory and looked over at the mum, trying to communicate compassion and understanding with my eyes as her daughter continued busily exploring the pharmacy. I wondered how I could help. Then my daughter made me proud.
Lucy walked over to the little girl and started talking to her, making friends with her. She knew from experience with Bethany that the other child just needed a distraction. I saw the mum relax a little and smile.
The girls went over to the waiting area and continued talking. They exchanged names, ages, talked about school and so on.
I was proud. My daughter was helping a stranger out. She saw a mum who needed help and knew how to help her.
It was finally my turn to collect my prescription. As I took my turn I could hear the children still talking by the waiting area. I smiled, pleased that Lucy had the confidence to make friends with strangers.
The queue was moving quicker now. I could see the young woman relaxing a bit. I told Lucy it was time to say goodbye and smiled at the small girl. As we walked out her mum caught my eye and mouthed the words, “thank you” to me. I smiled and nodded.
But really, I didn’t do anything at all to help. It was all Lucy, a young carer, who knew how to help a struggling mum with a challenging situation. Well done, Lucy!
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
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.
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.
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
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.
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.
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)
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.
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!
Why Are You Always on Your Phone?
My daughter’s words cut me to the heart. I never wanted to be the mum that was on her phone all the time, and I’m trying not to be, but at times it’s really hard.
“Come here, Lucy,” I said, putting my phone down and enveloping her with my arms. “I’m sorry if I’m on my phone too much. Can I explain why?”
I proceeded to tell her that when I’m on my phone I’m not just scrolling Facebook and YouTube videos. My phone is actually a multi-tasking tool. It is a mini-computer. Sometimes I use it for reading the news. Sometimes I’m actually internet banking. I also use my phone to do research and price comparisons when I’m planning a big purchase.
We live in an area where there aren’t many shops so I frequently have to order things online. I also blog on my phone and read articles online. I use my phone to listen to music and to send or receive emails including important ones relating to my children’s health or education.
I use my phone to stay in touch with friends and family and to take photos and videos of my family, capturing memories we can look back on together.
Before smart phones, people read the news in the newspaper. They did their banking at the bank. They did their writing on paper or at a Personal Computer. They did their shopping from catalogues or at the shops. Messages were left on answer-phones at the house or sent by “snail mail.” Photos were taken on proper cameras and mobile phones (when they first emerged) were only used for phonecalls and short texts.
So essentially I’m not just gaming or social networking when I’m on my phone. I’m actually doing stuff that has to get done at some time, somehow. But to the casual observer it looks like I’m just wasting time.
I need to do better at getting these things done when the kids are in school, but honestly, if they’re just watching kids TV shows, why shouldn’t I work on some of these admin things at the same time? I can also give cuddles while I work.
Next time you see a parent on the phone, don’t assume the worst. You really have no idea about the life admin they are trying to get done from their smartphone while managing a busy household in a modern age!
In Her Own Time
We arrived early for the playdate at our favourite park. Our friends hadn’t arrived yet. We planned to play, picnic, and walk in the woods nearby. When we lived in Ebbw Vale, we drove to this particular park frequently. It worked well for our family because it is completely fenced in, with public toilets, green space, and play equipment suitable for our girl’s ages. There is also access to the woods directly from the park.
I noticed the gate by the road was left open so I made sure to shut it as we went in. I didn’t want Bethany to bolt as she sometimes does, especially with the danger of the road nearby.
The children began to play on the equipment as I looked around. The grass was green after recent rain and the weather was perfect with blue sky and sunshine. It was one of the best days we had enjoyed all summer. I noticed a slim girl, about thirteen, with dark hair wander back over to the gate I had closed. She propped it open again. As a mother of a child with special needs I felt slightly annoyed. Why had she done that? Then I realised there was a lady going back and forth between her car and the litter bin, evidently clearing all the rubbish from the car.
Bethany wandered over to the climbing frame and climbed the steps. I followed her over and realised that she was navigating how to get past an older girl who was laying down on the lower level of the climbing frame and playing with an excessive amount of Shopkins. She was stocky, with dark hair, and about eleven years old. It struck me as a strange place to lie down and play. It was a bit inconvenient although it didn’t seem to bother Bethany as she climbed over the girl.
At that point, the older girl came over and spoke to the girl who was lying down. They were clearly sisters. The older sister pleaded with the younger one. “Please come now. It’s time to go. Mummy is waiting.” There was something I recognised in the girl’s face and in her tone of voice. The weariness and frustration was written in her eyes. The younger girl ignored her sister and carried on playing.
It all made sense now. Autism was at play. I knew the dynamic. I could see the struggle in the older sister’s eyes. The younger sister seemed oblivious as she carried on playing. She would come in her own time, only when she was ready. It was a dynamic I knew only too well.
The mother, had finally finished clearing rubbish from the car. She looked exhausted as she came over and successfully persuaded her younger daughter to come. The older girl gathered up her sister’s toys and followed them back to the car.
The interactions hit me like a gut punch. I had been internally annoyed by the girl propping the gate open. I had been internally frustrated by the other girl lying down in Bethany’s way on the climbing frame. I didn’t initially realise what else was going on, and I only figured it out because we live that Autism life too.
Lying down in inconvenient places is something Bethany does frequently. I think she does it as a coping mechanism. It doesn’t matter where she is; she will lie down on the floor in everybody’s way. She has laid down on the floor in public toilets, motorway service stations, Burger King, and the entrance of supermarkets. Even if the floor is filthy she will still lie down. On these occasions Bethany will only get up and move when she is ready. Occasionally a distraction will work to get her moving, but normally I just have to wait until she is ready.
The interaction at the park last summer was like a vision into the future. Bethany was five that day, and heavy to lift. At ten or eleven years old it will definitely be impossible for me to move her. And I will need passersby to be gracious and forgiving to us when we cause them an inconvenience. But will they be gracious and forgiving? Will they recognise when a disability is making things difficult for an individual or a family? Or will they just get irritated with us?
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
A reason begets more questions
I looked down at my phone. I had received an appointment from Bethany’s Paediatrician. At our last appointment she had said she would transfer our child to a more local Paediatrician (we recently moved house). She said she probably wouldn’t see us again and yet here was another appointment to see her.
I felt a knot in the pit of my stomach. Our last action at that Paediatrician’s office was to take a blood sample for genetic testing. Receiving an appointment meant the results were back. Something was up.
We only referred Bethany for testing to make sure her Autism and her Cleft weren’t part of some kind of Syndrome. We wanted to make sure there was nothing else to be aware of.
Last week Bethany and I went to the appointment. It turns out that Bethany is missing part of Chromosome 16. This deletion of information is not associated with a cleft lip and palate but is strongly associated with Autism. In fact, it is more than likely the cause of her Autism.
This news reinforced to me that Autism is not and never will be something that Bethany will grow out of. It is in her DNA! It is as much the thing that makes her the beautiful, fun, determined person she is as it is the disorder that disables her.
So, in Bethany’s case we have a reason for Autism. A reason for her severe developmental delays, particularly in use of expressive language. Yet now we have more questions. Was this loss of genetic information a fluke at conception? Am I or is my husband a carrier? If so, what about Lucy? How might this also impact any potential grandchildren? Exactly how intellectually disabling will her autism prove to be?
An answer. And yet so many more questions. The realisation again of the challenges our daughter faces compared to many other children. Again, the weight of another diagnosis falling on the shoulders of parents who wish they could make life easier for their child. We wish we could bear the challenges for her, and yet we can’t.
So, what can we do? We take some deep breaths and determine again to be the best support we can be to her. We commit again to love her unconditionally. And we pray to God for strength, help, and wisdom. We trust that He has allowed her disability for a reason. We recognise that all human life is beautiful and sacred, despite the challenges of disabilities.
And Bethany is a very determined child. With the right support she can and will flourish. She will achieve her full potential. And as long as she is happy, healthy, and accomplishing appropriate goals for her, what more can we ask for?
https://medlineplus.gov/genetics/condition/16p112-deletion-syndrome/
Memories, Musings, and Meditations 