When you parent a child with a severe communication disorder, you ask yourself a lot of questions:
What caused this? Will she ever talk? Will it always be this way? Why is her behaviour so challenging today? Is she feeling okay? Did someone hurt her? How can I help her? When will she speak?
You buy PECS cards and visual schedule boards, attend SALT workshops, consider buying tech devices to help with communication, and maybe even learn Makaton or another sign language.
You spend hours researching online, worrying out loud with your spouse, and perhaps you pray. You pray for a word. A single word. And when you hear her say it, you rejoice, because maybe she’s already six years old and only just speaking her first word!
Then you pray for a short phrase. You long for it. Verbal communication. And one day she jumps on daddy in bed, shouting, “wake up wake up!” Maybe you cuddle at night and tell her you love her, then hear “I wuv you,” in reply. Your heart bursts with joy.
You pray for yes and no, for please and thank you, and eventually the words come. “No” was much easier for Beth. No was her favourite word for a long time, as she tried everything to avoid the things we needed her to do. But just lately, when she’s in a happy and well-regulated state, I’ve noticed her saying “yes, mama” quite often; tear-jerking for this mama.
Encouraged by the progress, you start to wonder if she will ever ask a question. Then one day she says, “daddy, are you okay? What’s wrong?”
This girl continues to surprise and delight us. One day, she will come home and tell me how her day at school went. One day, she will be able to tell me what activities she did and who she played with.
Until then, I rely on her teachers to communicate through the app. I rely on others to keep her safe throughout the school day. And I pray. She has come so far. What will she surprise us with next?
Original writing by Jennifer Johnson ~ Dedicated to Bethany
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.
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
If you know Bethany, you know she basically has two moods. Extremely happy (and hyperactive with that) or extremely grumpy (refusing to do as asked and hiding away on her own, stamping her feet, or slamming doors). Most people only see Bethany’s happy side because she loves visitors, teachers, friends, and strangers, but truth be told, her behaviour can be extremely volatile.
Yesterday we were riding with my sister’s family to church because our car is being repaired. I sat by Bethany. “Are you happy today, Bethany?” I asked. “No,” she replied. “Are you sad?” I asked. She shook her head and said one word: “Grumpy.”
I marvelled.
I have never heard her use that word before. But when she is acting grumpy I generally tell her she is being grumpy. She has evidently taken that word, remembered it, understood it, and now has used that word for the first time ever (and in the correct context).
Bethany was grumpy yesterday morning. She was refusing to come and get her shoes on to go to church. It was only when I said we were riding with Auntie Amy that she came willingly. She even ran happily up the hill to Auntie’s driveway. She really loves her Auntie. But she was honest with me in the car when I asked how she was feeling.
Grumpy. Just one word which conveys a lot of meaning.
With this girl, one word means everything. She is learning to communicate how she feels with words. And that makes me happy, even if she is feeling grumpy.
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!
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.
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.
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.
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)
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.
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!
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
Every now and then Lucy will ask me questions about Bethany. Questions like, “Mummy, why doesn’t Bethany talk?” or “will Bethany ever talk?” I have to answer carefully. I used to say, “I don’t know”, because communication progress seemed so stagnant. These days, I say, “she does talk.” Bethany says some words. When or whether she will ever be able to manage a meaningful conversation I don’t know, but this year we have seen such a lot of progress.
Since we moved house last November, Bethany has regular interaction with her cousins, Aunt, and Uncle. She has also settled extremely well into her class at special school. Her attention and interactions have grown phenomenally. She has begun to repeat individual words here and there. I still haven’t heard the word “mama” since December 2020 but she has words that she says frequently and others that are occasional.
There is a song on YouTube about manners. It uses the words, “Here you are,” “Thank you,” “You’re welcome.” Bethany can now use the first two phrases in correct context when she wants to. Thank you sounds like “ank you,” but we know what she’s trying to say and it is wonderful to hear it.
Cat. Dog. Sheep. Pig. Car. Duck.
Words are wonderful aren’t they.
In June, Bethany hadn’t been feeling well. We knew because she was grouchy and lethargic and off her food. Then one morning she tugged at her ear, and spoke.
“Ear. Owie.”
Pure magic. My daughter was able to tell me what was wrong. We got her to the doctor and got the medicine she needed. Aren’t words wonderful?
One summer evening, the girls had eaten and left the table. John and I were eating dessert. Bethany came back to the table and sat down. My husband spoke; “Bethany, what do you want?”
“Cake.”
This was the first time Bethany has ever answered a question.
John fetched her some cake, although she had already had some chocolate for her dessert.
Yes, my child. You can have some cake. You can have all the cake.
It’s wonderful to hear a one year old say their first words. It’s wonderful to hear a two year old say their first words. It’s wonderful when a toddler starts to speak in sentences.
But when your child who is five years old, and who has five words in her vocabulary, finally starts to add to that vocabulary, and says those words in correct context and in answer to questions; that is extremely wonderful.
May we never overlook the wonder of words. Words are communication. Communication is a gift. A gift to be appreciated. A gift to thank God for.
“Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change.” James 1v17 (ESV)
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?
It has been a crazy six months! Packing up the house began in September and we moved North to Mid Wales in November ’22. The girls both had to change school. So they were both adjusting to living in a new house, a new town, a new church, and getting to know new teachers and new friends.
Amazingly the transition went really well. It helped that we moved to the same town as my sister’s family and were familiar with the area and the housing estate where we now live. But it was still a lot of change to cope with, particularly for our youngest autistic daughter who coped superbly!
Since starting at their new schools, both girls have settled well. Lucy’s teacher gives me glowing reports and she has made some friends. Bethany is very settled and enjoying her new school.
Bethany is starting to speak a little more, still occasional random words (not sentences), and only when she feels like it. But it is progress. She is also paying more attention and seeking out interaction at times. At school she is learning about waiting, turn taking, sharing, and developing her ability to sit for set activities. They also do a lot of learning through play and movement activities to get the wriggles out.
I believe there are signs that Bethany is making some great developmental leaps. She is giving a lot more attention and eye contact and showing signs of understanding spoken language and some body language.
Bethany recently started to shake or nod her head to indicate yes and no. These may sound like small things. They are gestures that most of us pick up relatively easily, but for Bethany, this has taken a long time. She only started using her finger to point last summer and hasn’t until now been able to tell me yes or no other than fussing for a no when upset.
Last night, as usual, Bethany didn’t want me to touch her hair before bed. She shook her head and leaned back on the cushions so I couldn’t touch her head. I told her that I understood she doesn’t like me doing her hair at night. She’s too tired. I told her that I wouldn’t brush it, but I would like to put it up in bunches so it didn’t get too messy and tangled overnight. I said, if I didn’t put it up it would be very tangled in the morning and it would hurt to have it brushed. I asked her again to please let me put her hair up. After a minute of processing, Bethany sat forward and let me put her hair up. To me that demonstrated her capability to understand language, to be reasoned with, and to be flexible. This is progress!
I noticed a slight smell from the PJs she was wearing. I told her the PJs were smelly and did she want me to change them? She shook her head. I asked if she was sure and held up some other PJs. She shook her head again. I asked if she wanted to stay in the smelly PJs and she nodded her head. I said okay and that I would wash them tomorrow. Again, this demonstrated that although she is mainly non verbal, she could understand my questions and respond to them.
My final question, instead of checking her nappy as I normally do, I asked; “do you need a clean nappy?” I held one up as a visual clue to my question. Again she shook her head. I marvelled. My girl is understanding me. And she is saying yes and no through her gestures. This is such enormous progress and ought to be celebrated!
With all of this progress comes a lot of hope. For the past few years we have wondered at times whether Bethany would ever talk. I feel optimistic about that now due to the progress she is making. Of course, that is cautious optimism, because for Bethany it often seems that progress goes two steps forward, one step back. For now we are moving forward, and I am thankful.
Bethany will never out-grow her autism. There will always be struggles. But if we can support her to a point where she can achieve her full potential and be able to communicate her needs we will have done well.
Bethany will always be autistic, but that is not who she is. Autism is woven into her and the way she responds to life’s stimuli, but it isn’t who she is. She’s a beautiful, loving, independently minded girl who loves dresses, princesses, and the colour purple. She loves to play and run and puddle jump. She loves to pour water and splash in the bath. She loves music and video and parties and chocolate cake. She has dealt with a lot in nearly 5 1/2 years of life. But she is stronger for it and currently thriving. I’m excited to see what she will achieve next!
Bethany. Little Miss Independent. Autistic and non speaking (for the most part) but noisy at times. Bossy. Knows what she likes and what she wants. Four going on fourteen.
I caught her getting down from the table with her ice cream cone so I put her back on her seat.
I left the room and as I did I glanced over my shoulder to see her getting down again. I turned and told her to sit down with her ice cream.
A quiet voice replied, “Go way.” My jaw dropped. “Go way,” she repeated. “Are you telling me to go away?” I said. She got down from the table, walked over to the doorway, looked me straight in the eyes and said, “Go way.”
If this was any other child they would be in trouble for being sassy.
But these are some of her first words and I can’t help but be amused. I put her back in her seat and smiled inwardly.
Words. Two words together with context and understanding. Well done my child.
My thoughts are busy tonight as I remember the last four and a half years. I remember discovering I was pregnant with you, the joy of knowing we were adding to our little family, and that Lucy was to have a sibling. I remember the morning sickness, the afternoon headaches, the cheese and pickle cravings and the peanut butter toast. I was so happy and yet oblivious to the challenges which were to come.
At my 20 week anomaly scan I expected to find out your gender, but I had a nagging feeling that something else was going on. I was right. The ultrasound revealed you had a cleft lip and possibly cleft palate. A week or so later at a specialist scan we discovered your cleft lip was bi-lateral. The specialist advised the palate was very likely involved too. The next several weeks were full of apprehension, appointments, and excitement as your due date grew closer.
The obstetrician advised a c-section and I was so ready to hold you in my arms, as well as wanting to be home in time for Lucy’s birthday, so a c-section was scheduled.
The planned c-section was surreal (and so much better than an emergency c-section!) I walked down the corridor to theatre and laid down on the operating table. The staff were all cracking jokes as they prepped me for surgery, and I was cold. It was a “chilled out” experience in many ways. When you were born they did not hand you straight to me for skin to skin cuddles like they do in One Born Every Minute. I’m still mad about that. They said it was too cold (probably right) and took you to be wrapped up. They brought you back to me in recovery for a short cuddle, before taking you to Special Care. We were told they were concerned about your oxygen levels and you needed to be transferred to NICU in a different hospital.
Staff wheeled me up to Special Care in my bed to say goodbye to you. Then you were taken away. That night, in hospital recovering, the LORD gave me complete peace that He was in control. I was led to pray for your swift return to the same hospital as us. The next day, after a night on ventilation, you were returned to Special Care and us.
The next few days were a whirlwind of pumping breast milk, and going between the ward and special care to spend time with you and practice feeding you with the speciality feeding bottles that CLAPA had sent us. You were delivered on a Friday morning, and the following Wednesday we were allowed to take you home. We were all home in time for Lucy’s birthday.
Your first year of life saw the worst Winter Snow Storm (The Beast from the East) witnessed in Wales for many years. You had two major surgeries on your lip and your palate. The second op was an especially difficult recovery and involved a hospital re-admission due to dehydration. During that time God was our refuge and strength. He was a very present help to us during our time of trouble.
You were a lovely baby. Happy and easy for the the most part (except in the late evenings). You were curious and engaged and would sit on my lap to look at books with me. You made eye contact.
Somewhere in your second year of life, that all changed. You didn’t interact with us as much. You didn’t respond to your name. You wouldn’t point and you avoided eye contact. Speech was lacking. The only thing you would give any attention to was DVDs or Music. You played by yourself and not with others, except occasionally your sister.
The health visitor came to assess you and decided to refer you for global development delay. Then the global pandemic hit our shores and the nation went into lockdown. That Spring and Summer was hard. I was doing home learning with your sister and watching you retreat into your own little world. I was worried about you. I cried out to the Lord for help. I rang all the professionals I could to seek support and advice.
In August and September that support came. A trickle at first and then a flood. So many professionals got involved and there was a lot of advice to absorb. I already knew you had Autism, but we needed to get you diagnosed in order to get you the help you would need going forward.
It was getting harder to manage your behaviour and frustrating for you because you couldn’t communicate your needs. We were all struggling. My joint pain was flaring and there seemed to be no let up.
You were awarded funding for an assisted place, two sessions a week at a local nursery to help you along. Then at Christmas 2020 another lockdown happened. You stopped saying “Mama.”
In February, you began regular nursery. I began to feel like I was no longer submerged. I was given things to try at home to help with communication and transitions.
Finally in June, the Autism diagnosis came. I was expecting it, but seeing it in writing was both heavy and relieving. We felt validated. We weren’t going mad. We weren’t bad parents. We were dealing with a disabled child. A beautiful, affectionate, and funny child who had extreme difficulty processing and understanding language. Our precious child who already had to deal with major surgeries as a baby faced the reality of learning to manage a lifelong disability.
Where are we now? You are four years old and currently only able to clearly say one word in the correct context: “Hug.” My darling child, we will give you all the hugs and help you need. Your life has brought us all challenges, but you have brought us great joy too. Your smiles, hugs and kisses are heart melting. Your enthusiasm and laughter are infectious. Your love of music and dancing is precious. Your skill at communicating your desire without speaking is clever. Your love of dresses and the colour purple is adorable. You will never know a stranger as you are so confident and independent. There is a danger in this, but I pray it will serve you well.
In short, my Bethany, we loved you before you were born. We loved when you were born, with your cute wide cleft smile. We loved you through two major surgeries. We loved you before autism was a thought in our heads. We loved you and laughed with you through a global pandemic. And we love you now as our precious autistic daughter. You are valued and loved. You have faced and will face challenges that other children never will. But you are a fighter. You are strong. And you have praying parents and an Almighty God to help you.
Verses:
“God is our refuge and strength, a very present help in trouble. Therefore we will not fear.” Psalm 46:1-2a
“Then Samuel took a stone and set it up… and called it’s name Ebenezer, saying, “Thus far the LORD has helped us.” 1 Samuel 7:12
“Hear my cry, O God; Attend to my prayer. From the end of the earth I will cry to You, When my heart is overwhelmed; Lead me to the rock that is higher than I.” Psalm 61:1-2
Memories, Musings, and Meditations 