Posted on by Jennifer Johnson

A Better Person

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

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

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

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

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

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

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

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

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

Determining to cling to the promises of God in Scripture.

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

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

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

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

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

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

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

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

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

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

Posted on by Jennifer Johnson

Milestones

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

Posted on by Jennifer Johnson

The Wonder of Words

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)

Posted on by Jennifer Johnson

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/

Posted on by Jennifer Johnson

The Wheels of Progress

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!

Posted on by Jennifer Johnson

Two Words

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.

I bet her next word will be “no.”

Posted on by Jennifer Johnson

On Your Birthday Eve

Darling Bethany,

My thoughts are busy tonight as I remember the last four and a half years. I remember discovering I was pregnant with you, the joy of knowing we were adding to our little family, and that Lucy was to have a sibling. I remember the morning sickness, the afternoon headaches, the cheese and pickle cravings and the peanut butter toast. I was so happy and yet oblivious to the challenges which were to come.

At my 20 week anomaly scan I expected to find out your gender, but I had a nagging feeling that something else was going on. I was right. The ultrasound revealed you had a cleft lip and possibly cleft palate. A week or so later at a specialist scan we discovered your cleft lip was bi-lateral. The specialist advised the palate was very likely involved too. The next several weeks were full of apprehension, appointments, and excitement as your due date grew closer.

The obstetrician advised a c-section and I was so ready to hold you in my arms, as well as wanting to be home in time for Lucy’s birthday, so a c-section was scheduled.

The planned c-section was surreal (and so much better than an emergency c-section!) I walked down the corridor to theatre and laid down on the operating table. The staff were all cracking jokes as they prepped me for surgery, and I was cold. It was a “chilled out” experience in many ways. When you were born they did not hand you straight to me for skin to skin cuddles like they do in One Born Every Minute. I’m still mad about that. They said it was too cold (probably right) and took you to be wrapped up. They brought you back to me in recovery for a short cuddle, before taking you to Special Care. We were told they were concerned about your oxygen levels and you needed to be transferred to NICU in a different hospital.

Staff wheeled me up to Special Care in my bed to say goodbye to you. Then you were taken away. That night, in hospital recovering, the LORD gave me complete peace that He was in control. I was led to pray for your swift return to the same hospital as us. The next day, after a night on ventilation, you were returned to Special Care and us.

The next few days were a whirlwind of pumping breast milk, and going between the ward and special care to spend time with you and practice feeding you with the speciality feeding bottles that CLAPA had sent us. You were delivered on a Friday morning, and the following Wednesday we were allowed to take you home. We were all home in time for Lucy’s birthday.

Your first year of life saw the worst Winter Snow Storm (The Beast from the East) witnessed in Wales for many years. You had two major surgeries on your lip and your palate. The second op was an especially difficult recovery and involved a hospital re-admission due to dehydration. During that time God was our refuge and strength. He was a very present help to us during our time of trouble.

You were a lovely baby. Happy and easy for the the most part (except in the late evenings). You were curious and engaged and would sit on my lap to look at books with me. You made eye contact.

Somewhere in your second year of life, that all changed. You didn’t interact with us as much. You didn’t respond to your name. You wouldn’t point and you avoided eye contact. Speech was lacking. The only thing you would give any attention to was DVDs or Music. You played by yourself and not with others, except occasionally your sister.

The health visitor came to assess you and decided to refer you for global development delay. Then the global pandemic hit our shores and the nation went into lockdown. That Spring and Summer was hard. I was doing home learning with your sister and watching you retreat into your own little world. I was worried about you. I cried out to the Lord for help. I rang all the professionals I could to seek support and advice.

In August and September that support came. A trickle at first and then a flood. So many professionals got involved and there was a lot of advice to absorb. I already knew you had Autism, but we needed to get you diagnosed in order to get you the help you would need going forward.

It was getting harder to manage your behaviour and frustrating for you because you couldn’t communicate your needs. We were all struggling. My joint pain was flaring and there seemed to be no let up.

You were awarded funding for an assisted place, two sessions a week at a local nursery to help you along. Then at Christmas 2020 another lockdown happened. You stopped saying “Mama.”

In February, you began regular nursery. I began to feel like I was no longer submerged. I was given things to try at home to help with communication and transitions.

Finally in June, the Autism diagnosis came. I was expecting it, but seeing it in writing was both heavy and relieving. We felt validated. We weren’t going mad. We weren’t bad parents. We were dealing with a disabled child. A beautiful, affectionate, and funny child who had extreme difficulty processing and understanding language. Our precious child who already had to deal with major surgeries as a baby faced the reality of learning to manage a lifelong disability.

Where are we now? You are four years old and currently only able to clearly say one word in the correct context: “Hug.” My darling child, we will give you all the hugs and help you need. Your life has brought us all challenges, but you have brought us great joy too. Your smiles, hugs and kisses are heart melting. Your enthusiasm and laughter are infectious. Your love of music and dancing is precious. Your skill at communicating your desire without speaking is clever. Your love of dresses and the colour purple is adorable. You will never know a stranger as you are so confident and independent. There is a danger in this, but I pray it will serve you well.

In short, my Bethany, we loved you before you were born. We loved when you were born, with your cute wide cleft smile. We loved you through two major surgeries. We loved you before autism was a thought in our heads. We loved you and laughed with you through a global pandemic. And we love you now as our precious autistic daughter. You are valued and loved. You have faced and will face challenges that other children never will. But you are a fighter. You are strong. And you have praying parents and an Almighty God to help you.

Verses:

“God is our refuge and strength, a very present help in trouble. Therefore we will not fear.” Psalm 46:1-2a

“Then Samuel took a stone and set it up… and called it’s name Ebenezer, saying, “Thus far the LORD has helped us.” 1 Samuel 7:12

“Hear my cry, O God; Attend to my prayer. From the end of the earth I will cry to You, When my heart is overwhelmed; Lead me to the rock that is higher than I.” Psalm 61:1-2