Posted on by Jennifer Johnson

True Love

On Christmas Day, 2021, my husband made me cry. Not bad or mad tears, but happy grateful tears. We have been blessed with a reasonably compatible relationship (thanks E-Harmony) and we rarely argue. The few times we do argue it is normally due to parenting styles and pressures related to special needs parenting.

Nevertheless, 2021 was a long year, and parenting during the Pandemic was exhausting. I was missing the romantic parts of new love: quiet dinner dates, outings without children in tow, movie nights that begin before 930 in the evening and don’t involve falling asleep halfway through.

We were preparing to put our house on the market and honestly I wasn’t expecting much for Christmas due to financial pressures. Anyway, when I unwrapped my gift, it was this framed painting (picture below). At that moment I started sobbing.

There’s a story behind this painting. My Nanna painted it for me when I was a teenager. It is of the lane where she and my Grandad lived, and where I walked many times with them during my visits.

My grandparents are no longer with us. The house and garden they called home had to be sold after they died. It was sold to a developer and on that plot of land there are now two large modern houses built. The large garden they laboured in and the workshop from which my Grandad ran his business are all gone. Apart from memories and photos, this painting represents all I have left of my grandparents.

This painting, hung in our maisonette when we got married, and then in the house we first rented in South Wales. When we bought our first home, I hung it up again. But the plaster in that house was very old, and one day the hook gave way. The frame broke and the glass smashed.

I was, naturally upset. We put the painting away in the cupboard and planned to re-frame it as soon as possible. But we were newborn and toddler parenting and life was busy. Then we found ourselves dealing with parenting during a pandemic and figuring out how to manage our undiagnosed autistic daughter.

So when I unwrapped this painting, re-framed for me, I was undone by the thoughtfulness of my husband. He knew how much the painting meant to me and got it re-framed.

His thoughtfulness is demonstrated in many other ways too, whether it be late night dish-washing, cooking dinner, or baking cake for a church function. He may not always think to give a compliment but he is certainly thoughtful in other ways.

Dining out and attending concerts can be very romantic and enjoyable things. Receiving flowers is always nice too. But true romance is much more than that. True romance is demonstrated in a thousand small thoughtful daily choices.

I write this to honour my thoughtful husband, John.

“Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.”
1 Corinthians 13:4‭-‬7 ESV

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

A Very Special Young Carer

I often post about special needs parenting. I write about autism and our youngest, Bethany; and the difficulties her ASD causes for her. Let me talk to you a bit about our eldest daughter, Lucy today.

Lucy is my gorgeous, fun-loving, active, never stop talking, exuberant girl. She is highly intelligent, loves school, and is extremely sociable and friendly. She is kind and compassionate and very sensitive.

Lucy is also highly anxious. As a young toddler she would scream and cry if put into an unfamiliar situation. Sometimes she would even throw up if her routine was changed or she had to enter nursery via the office due to tardiness!

With the support of school staff and good communication, Lucy has learned to be more flexible and to go with the flow. And Bethany’s autism has challenged Lucy too and forced her to learn how to manage her anxiety.

Last summer, we had several difficult walks which resulted in Lucy having panic attacks due to Bethany’s inflexible behaviour out and about. Bethany wants to go her own route, not mum’s planned route, or she won’t cross the road, or lies down on the ground when we don’t go her desired way. One time she even laid down in the middle of a busy road! Bethany is also heavy and very strong so carrying her isn’t always an option.

It got to the point last summer when Lucy didn’t want to go out for walks with just me and Bethany in case Bethany was hard to manage. She still prefers to go out with daddy as well as mummy because of this. However, she is learning to be brave. She is learning to manage her anxiety so that it doesn’t spoil her opportunities for fun. She is learning to take deep breaths and to relax and be patient with Bethany, because Bethany does everything “in her own time.”

She is also learning ways of managing the challenging behaviours of Bethany. She’s the one to say “mummy give her a distraction to calm her down.” “What about the fidget bag mummy?” Or “use the phone/tablet.” Or sometimes she will completely diffuse a stormy situation by breaking out into one of Bethany’s favourite songs.

The other day the girls were running down the hill from school when Lucy accidentally bumped Bethany. Lucy and I looked at Bethany and we saw the angry reaction starting on her face. With a flash of brilliance Lucy started singing, “if you you’re happy and you know it clap your hands.” The situation was saved. Lucy didn’t get hit or bitten this time. She knew just the right thing to do to change Bethany’s mood.

This child, our 6 year old Lucy, is a young carer. She puts up with a lot. She is learning a lot about autism by being part of our family. And she loves her sister in spite of the challenging stuff. They play together. They dance together. They laugh together. They watch TV together. They cuddle together. And sometimes they fight together. And Bethany always wins if mummy or daddy don’t get there first.

We are so proud of Lucy. She manages all this stuff at home and still works really hard in school. We hear glowing reports. We wonder what the future holds for her. We know God has good plans!

#proudparents
#youngcarer
#autism

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

Posted on by Jennifer Johnson

The Challenge of Chronic Illness

Back in September I had a long awaited Rheumatology appointment and after several years of experiencing symptoms, many of which have been progressively worsening, the Consultant diagnosed me with Sjogrens Syndrome.

Although SS primarily attacks the glands in the body it has other symptoms which can be very difficult to deal with. The worst symptoms for me have been persistent arthralgia in my hands, wrists, elbows, and knees, as well as overwhelming fatigue and GI issues. Coupled with the situation of a Pandemic and the challenge of raising young energetic children, you could say that 2020 has been challenging (understatement)!

Being diagnosed with a serious illness is never easy, but in some ways it brings a measure of relief. I am trying a medication which can take up to six months to work. It doesn’t seem to be helping me yet. My pain levels are always worse during wet or cold weather of which we have an abundance here in Wales. I am praying the medication will start to help me otherwise there are few options available apart from pain management, pacing, rest, and gentle exercise.

There is also the possibility of SS occurring alongside other conditions which I am trying not to worry about.

If this illness has taught me anything it is that I need Jesus to help me. Without Him I am without strength and without hope. My faith in Him has been an anchor for my soul and the comfort of His presence has brought me joy.

Suffering through longterm illness has also taught me thankfulness for the little things. A pain free day; praise God! A good night’s sleep; thank God. A gentle walk outside or playing and cuddles with the children. Pain medication and hot baths. A supportive and domesticated husband. Good food. Joint household visits with my sister’s family. Scripture reading. Prayer. Christian music. A text from a friend. These things are all blessings from God that help me to bear up under the strain of illness and pain.

I have occasional days where I feel absolutely fine and I could conquer the world but they are few and far between. At the moment my pain levels are very high. I am struggling to type this on my phone because of wrist and hand pain but I felt it was time to share and to ask friends who share my faith for their prayers.

Thanks be to God who is our refuge and strength, a very present help in trouble. The LORD is good, a stronghold in the day of trouble. He knows those who put their trust in Him.

Thanks for reading.

https://www.bssa.uk.net/

Posted on by Jennifer Johnson

When The Work is Done

“You can rest when the work is done,” they said.

“That sounds like a good work ethic,” said my younger naive self.

Truth be told, my work is never done. I am a mum. Therefore I shall wisely rest when I can.

The work will never all be done.
Show yourself a little mercy and kindness. Take some rest if you need it.

The end.

Posted on by Jennifer Johnson

The Years Are Short

Someone once said that the days are long but the years are short. I am nearly five years into this parenting journey and I understand what they mean now.

Bethany is just one month off her third birthday. She has changed so much this year. She’s really not a baby anymore but is still a gorgeous little girl.

In many ways, Bethany is just like any other child. She runs, climbs, laughs, smiles, screams etc. But Bethany has her own particular challenges. She doesn’t talk, except for the word “mama” or vowel sounds. We are still unsure whether this is related to her palate (she has had two surgeries already for cleft lip and palate) or whether her communication issues are more special needs based.

Bethany has developmental delays, mainly in communication, but she also displays some autistic style behaviour: spinning, hand flapping, severe tantrums. She has no fear of danger and also has sensory processing issues.

Covid19 has not helped as far as getting her the help she needs. In mid summer we began attending video link therapy sessions. The number of professionals involved increased in August and I’m feeling generally more supported, although I tend to have a lot of appointments which can mean that not much gets done at home.

We have recently been transferred the the special needs speech and language therapy team. I am hoping we will be able to have in person therapy soon as it is hard to engage Bethany through video link.

It is increasingly clear that we made the right decision to put Lucy into school this year rather than the original plan of homeschooling. She is settled and flourishing.

Friends who pray, please pray for us as we navigate the special needs world. I am hopeful that Bethany’s issue is just her palate but from her behaviour it seems maybe not.

If it is her palate we will have another surgery to (not) look forward to.

Thanks for reading.

Jenni

Posted on by Jennifer Johnson

Highlights Should Include Lowlights

Facebook and Twitter etc most often show just our highlights. We put our best foot forward and share our happiest moments and our sweet successes. But how often do we share our problems and our life challenges?

Sharing our problems and challenges is hard on social media. Maybe that’s because it can be impersonal. Maybe it’s too public. Not many people are comfortable being vulnerable with 500+ people.

The problem with not sharing these things is that to the observer our life looks easy. We have no problems. We have the perfect life and the perfect family with lots of holidays and adventures etc. The reader can become envious and disillusioned with their own life, filled with trials and tribulations.

Can I challenge you to be brave? Can I challenge you not just to share the good, but to at least share some of the challenges? After all, the challenges of our life are what grow us. They make us stronger and hopefully better people if we allow God to mould us through them. You don’t have to share everything tough, but maybe some of it, just to balance out your highlights reel.

I will try to lead by example.

Thanks for reading.

Jenni

Posted on by Jennifer Johnson

Writers Write

While at university, I majored in the School of Religion and minored in Creative Writing. Unfortunately I have done very little writing since. I have been busy; first with jobs and Christian ministry commitments, and then with motherhood. However, as life has progressed I have been sensing a call on my heart to begin to journal the highs and the lows of everyday life. There are so many lessons and memories that ought to be remembered and reflected upon, and so many things that God is teaching me personally, both through the challenges I face and also through His Word. In the Bible we read:

“Then Samuel took a stone, and set it between Mizpah and Shen, and called the name of it Eben–ezer, saying, Hitherto hath the Lord helped us.”
1 Samuel 7:12

This blog is my feeble attempt to set up memorials of how God has helped and is helping me in life’s many challenges. I hope that sharing may help and encourage others, because “we read to know we are not alone” (William Nicholson).

Jenni