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Questions

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

Posted on by Jennifer Johnson

Published!

I have recently begun the journey into independent publishing. It is extremely difficult to get an agent, let alone get a publisher to take you on board. I started a course with Royalty Hero in May which is helping me to learn the process of self publishing as well as marketing skills.

My first book is about matters of faith. It’s available on Kindle now and in paperback from August 5th. Find it here:

https://mybook.to/whybelieve_TT

Posted on by Jennifer Johnson

Is There Hope for a Broken World?

A few days ago, I opened a news app on my phone. I read of a heartbreaking incident in Vancouver, Canada. A man had driven a car at high speed through a crowd of people. There were fatalities and many injuries. Unfortunately, it is not the first incident where someone has used a car as a weapon in this way.

The story weighed upon me, along with the coverage of the wars in Gaza and Ukraine. I also read of the depressing economic forecasts, the problems in the NHS, and other senseless acts of violence. I felt extremely saddened and overwhelmed.

I thought about some troubling situations our family and friends are facing; the struggles of special needs parenting; the difficulties my autistic daughter experiences every day; and all the many things that need doing around the house and the garden despite the lack of time and spare cash to do them.

It’s a lot.

In life there is a lot to overwhelm us and make us weary; things that can even make us hopeless, if we let them.

I felt helpless and hopeless, so I did the only thing I know to do as a Christian—I knelt to pray. I cried to God and told Him that I didn’t understand. I didn’t understand why things had to be so hard. I didn’t understand why people did such wicked things or why He was waiting so long to intervene in this world.

Gently I was reminded that He has intervened once, by sending His only Son to bear our sin debt on the cross. While He walked the earth Jesus repeatedly demonstrated His love and compassion on the poor, the sick, and the oppressed. He entered our broken world and experienced rejection, suffering and pain. He brought healing and hope to people. His teachings made the world a better place than it was before. In love He laid His life down, and in victory He rose from the dead. He also promised to come again.

When? How long? How bad do things have to get?

I have a theological answer to this question: The truth that God is being gracious in giving people more time to repent (turn from their sins to Him).

If I’m honest, at times that answer still doesn’t satisfy me. In Romans 8:18-23 we read about how all creation is groaning and waiting for redemption. That describes how I feel at times in this broken world. I long for a better world; for a new heaven and a new earth, where righteousness reigns.

God has promised that this will happen. I’m impatient for it. I want it now. And yet I must wait.

This morning, I opened my Bible to read The Gospel of John, chapter 11. Christians will be familiar with the passage which tells a true story about a man named Lazarus. He was a good friend of Jesus and had two sisters called Mary and Martha. In the story Lazarus became sick. Jesus was sent for, but He didn’t go to his friends straight away. He had other things He needed to do first, and He had a bigger plan.

When Jesus finally arrived at Bethany, where the family lived, Lazarus had been dead and buried for four days already. Martha came to meet Jesus and cried out to him: “Lord, if you had been here, my brother would not have died.” Jesus responded: “Your brother will rise again.” Martha thought Jesus was speaking of the resurrection in end times, but he wasn’t.

Later in the story, after weeping with Mary and Martha, Jesus asked to be taken to the tomb. Many mourners followed them so there was a crowd of people to witness what happened next. Jesus asked for the stone to be rolled away from the tomb but he was warned there would be a nasty smell. Jesus responded, “Did I not tell you that if you believed you would see the glory of God?”

They rolled the stone away and “he [Jesus] cried out with a loud voice, “Lazarus, come out.” The crowd gasped as Lazarus slowly shuffled out, bound with grave clothes, and his face wrapped with a cloth.

After this sign, many of the Jews who had seen what had happened believed in Jesus. Word came to the Pharisees and from that point they made plans to put him to death. They were jealous of Jesus’ following.

My point in sharing the story is this: Mary and Martha had to wait, in order that a greater miracle might be done. Rather than just going straightaway and healing a sick man (as Jesus had done many times already), He had plans to do something far greater—raise a man from the dead!

Mary and Martha’s job was to trust Jesus when they didn’t understand. That is what Christians must do today, as we wait for Him to show His glory and healing hand again to a broken world.

As I meditated on these Scriptures, my attention was drawn to the lyrics of a hymn which seems appropriate to share below:

I Set My Hope

When this life of trials test my faith,
I set my hope on Jesus,
When the questions come and doubts remain,
I set my hope on Jesus,
For the deepest wounds that time won’t heal,
There’s a joy that runs still deeper,
There’s a truth that’s more than all I feel,
I set my hope on Jesus,

I set my hope on Jesus,
My rock, my only trust,
Who set His heart upon me first,
I set my hope on Jesus,

Though I falter in this war with sin,
I set my hope on Jesus,
When I fail the fight and sink within,
I set my hope on Jesus,
Though the shame would drown me in its sea,
And I dread the waves of justice,
I will cast my life on Calvary,
I set my hope on Jesus,

I set my hope on Jesus,
My rock, my only trust,
Who set His heart upon me first,
I set my hope on Jesus,

Though the world called me to leave my Lord,
I set my hope on Jesus,
Though it offer all its vain rewards,
I set my hope on Jesus,
Though this heart of mine is prone to stray,
Give me grace enough to finish,
‘Til I worship on that final day,
I set my hope on Jesus,

I set my hope on Jesus,
My rock, my only trust,
Who set His heart upon me first,
I set my hope on Jesus,

I set my hope on Jesus,
My rock, my only trust,
Who set His heart upon me first,
I set my hope on Jesus,

I set my hope on Jesus,

Written by Keith Getty, Matt Boswell, and Matt Papa

Posted on by Jennifer Johnson

Value

I sat in the cafe with my friend, a fellow Autism mum whom I had met through a SALT workshop at my daughter’s school. For almost two hours we had been catching up, drinking tea, and talking all about faith, parenting, and different approaches we were trying with our autistic children. Then she stopped and asked me, “how is Lucy doing?” Lucy is my older child. I told her she was doing okay, but her relationship with Bethany has its challenges at times, because of Bethany’s physicality. Beth plays rough— more like a rugby player than a seven-year-old girl!

I’m not sure how the conversation got there, but I found myself telling my friend about the time when my obstetrician offered me an abortion because she was concerned about Lucy’s head size; she thought it was possible the baby may have Down Syndrome. At the time of this conversation, I was approaching full-term and was completely horrified at the suggestion of a termination. I had been talking to my baby and feeling her kicks for weeks. We had named her already. I responded more calmly than I felt inside, telling the doctor that our child was wanted and loved no matter what. We were keeping our baby. My heart filled with sorrow at the thought of other babies having their lives cut short due to a fear of parenting a disabled child. Lucy arrived and although she had some complications after she was born, she is now a healthy and thriving nine-year-old.

A few years later, I found myself having a similar conversation with another doctor. We were discussing our second child’s cleft lip and palate which had been diagnosed via ultrasound. The offer was framed slightly differently, as the excellent care available to cleft babies was emphasized, but abortion was still mentioned as an option if we didn’t wish to continue with the pregnancy.

As a child and a young adult, I knew two people with Down Syndrome. They were some of the kindest and emotionally “in tune” people I have ever met. They had hobbies, things they enjoyed, and families they loved and who loved them. They were cared for and valued despite their disabilities.

Valerie and I left the café and began walking through the garden centre. I stopped for a moment. “Can you imagine if they ever came up with a pregnancy screening test for Autism?” We looked at each other in horror as we thought about the implications of that. How many autistic lives would end before they were even born if a screening test was developed?

We harp on and on about disability rights, children’s rights, and equal rights in our society, but the law only applies those rights to people after they are born? As a Christian, I believe that human life is sacred; created in the image of God. I believe that human life begins in the womb.

According to UK law, abortions are legal up to 24 weeks. However, they are legal under certain circumstances up to birth. These circumstances include a severe foetal abnormality (which apparently includes a cleft lip). If we ascribe equal value to disabled individuals in comparison with non-disabled, why is the law on abortion different? As parents, our job is to protect and love our children no matter what. Surely this protection and love should begin as soon as we discover the pregnancy, regardless of whether the baby has a disability.

We have a tendency in our society to value people based on what they can bring to the table. We value those with great intellect and creativity. We value those who are skilled at building and fixing things. We value those who excel in sports. We value those who have financial acumen and bring wealth to the nation. We value artists and musicians. The government values those who pay taxes; those who are seen to contribute to our country’s prosperity.

However, I believe we all contribute something to our community and our country, whether it be economically or otherwise. We all have roles to play which are important regardless of whether they are financially lucrative for the nation: Stay at home mothers, unpaid carers, disabled people, volunteer workers, the elderly, children and babies are all valuable and have a place in our society. No one should be screened out because of age or disability. We all have a responsibility to take care of one another. I have written before that parenting an autistic child has made me a better mother and a less judgmental and more compassionate person. I would have missed out on that growth as a person had Bethany never been born.

As Lin-Manuel Miranda, a songwriter for the popular Disney movie, Encanto wrote:

“I think it’s time you learn,
You’re more than just your gift…
The miracle is not some magic that you’ve got,
The miracle is you, not some gift, just you,
The miracle is you,
All of you, all of you….”

The truth is that every person has value. We all bring something to the table. We all have something to offer society—even those with disabilities. Society benefits when we value those who are less able or frailer than we are. We are a better society when we compassionately and selflessly care for one another.

Continuing my conversation with Valerie, I told her, “I would do it all again. Despite all the challenges and stress of special needs parenting, I would do it all again. I wouldn’t be without Bethany.” She heartily agreed with me, saying the same about her own autistic son.

Photo of my daughter after she was born with bi-lateral cleft lip and palate.

Posted on by Jennifer Johnson · 2 Comments

Determination

On Friday afternoon Bethany returned home from school with a certificate for “always being so determined in all her focused tasks.” This certificate made me smile. It nearly made me cry. It was an answer to prayer.

That certificate flooded my brain with memories of Bethany and her determined behaviours all through toddlerhood to now at just over 6.5 years old:

The child who I had to strap into her booster seat in order to brush her teeth and hair.

The child who thrashed about and screamed while I endeavored to brush as gently as possible.

The tornado who spun away from me or arched her back when she didn’t want to be held.

The child who seemed to have superhuman strength to wriggle free when I was holding her to keep her safe.

The child who kicked and writhed through nappy changes and ran away butt naked because she didn’t want to wear a nappy.

The child who fought hair washing with all her might.

The child who lay down on the floor and refused to move during walks and in shops when she’d had enough.

The child who slammed the toilet lid down repeatedly when she refused to toilet train.

My wild child.

My determined child.

The child I could never reason with.

She sees only her own way.

Bethany’s autism exacerbates typical childhood behaviours, making her overwhelmingly difficult to handle at times.

My prayer was that this wild determination would one day be channelled. That it could become a good characteristic and not just an overwhelming frustration for her weary parents.

That prayer is being answered. On Friday she brought home a certificate for her determination in her school work.

That’s my girl. She makes us proud.

Posted on by Jennifer Johnson

Disability and Faith

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

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

He is there. He is good.

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

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

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

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

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

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

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

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

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

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

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

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

Posted on by Jennifer Johnson

Thoughts of Home

What is home exactly? This is a question I have been pondering recently. It is defined by the Cambridge Dictionary online as “the house, apartment, etc. where you live, especially with your family.” But is that all it is? The same dictionary goes on to say that home can also be used to describe “someone or something’s place of origin or where a person feels they belong.” This definition hits closer to the mark for me.

Home is so much more than a place. Home is a feeling. Home is “my people.” It is not just where one lives, where one lays one’s head, or where one stores all their stuff. Home is a place of safety. A place of emotional attachment. Someone can live in a house, with all their stuff, and even with their family, and still not feel safe. They are not “at home.” At home we are comfortable to be ourselves, to relax, to enjoy each other’s company, and to feel safe.

I have had several homes in my life. The first one I don’t remember because my parents moved when I was a baby. The next home, I consider my childhood home, where I was a toddler, infant, and younger junior. It was packed full of children and stuff. It wasn’t perfect. It was busy, and loud, and at times there were voices raised in anger. But it was home. I was with my family who loved me.

When I was about nine years old, we moved house again, to the house where my parents still live now. I don’t live there anymore but visiting them is like going home because I lived there for so much of my life, and because my parents are there. It is a place which is full of clutter, laughter, and occasional arguments. It is a place of love.

At the age of almost nineteen, I moved to the USA for four years of studying at university. I lived in the Halls of Residence for those four years, and although it sounds strange to say it, the place did start to feel like home. The halls lacked some of the comforts of home (privacy being one of them), but I built friendships there which became like family relationships. There were also friends living near to campus who opened their homes to me anytime I wanted to come over. They made me feel “at home,” allowing me to do laundry, share meals, and help myself to drinks etc.

There were also friend’s moms who “mothered” me, bringing me cakes and cookies to my room on campus, and taking me places, or generally just being a mother figure to talk to while living overseas. I really appreciated that. In fact, it got to the point after four years, that I felt so comfortable and “at home,” where I was, that I was apprehensive about returning “home” to my place of origin.

I lived back “at home” with my parents for seven more years before I was married and moved into a small maisonette with my husband. It was there that we got to know each other better and learned to feel “at home” with each other. It was to that home that we brought home our first daughter, Lucy. Having a baby in the maisonette made it feel even more like home. Maybe that is because to me, home is family.

During Lucy’s first nine months as a baby, we came to the realization that we couldn’t afford to grow our family living where we were. We needed to move away from my “home area” to a place where housing was more affordable. This meant leaving the area where my parents and two of my sisters lived with their husbands and children. It also meant leaving my “home church,” the church where I had been attending since I was a young teenager (apart from my time overseas). They were my friends and family, my support network. They were “home”.

We left my “home.” We moved to Wales which was “home” for my husband, although we were living in a completely different area of Wales. We had two houses there. Our first was a modern three-bedroom rental house on a main road. It was there that Lucy was weaned and took her first steps. It was there that we forged new friendships with a “new to us” church community. It was there that I discovered I was pregnant again.

We decided to buy a house before baby number two was born. We were in a hurry to move because of the pregnancy and bought a very spacious three-bedroom house in a good location, but which needed a fair amount of TLC. It was the kind of TLC that required money we didn’t have, so we spent five years making do and patching up things here and there. We did our best to make it home, and although we raised the girls through their infant years there, the area just didn’t feel like home to either of us. That house will always hold a special place in my heart though, because of all the memories we made there with our little girls. We like to visit those memories regularly on Facebook and Google Photos.

When we moved to our current house in Mid-Wales just over a year ago it was like coming home. We moved to a house on the same estate where my youngest sister lives with her husband and children. It is a town that feels like home because my grandparents lived here for most of my childhood. We were regular holiday-makers as children and teens visiting them here. Although they are deceased, the memories of my grandparents live on here. We have joined a church family where we feel at home and have made friends. Our house is cosy (small) but homey and we feel safe and comfortable here. We are home.

And yet, the older I get, the more I sense that these earthly homes are transitory. Even my current home will not feel the same as my children grow, change, and eventually move out.  As I read in Scripture, “here we have no lasting city, but we seek the city that is to come” (Hebrews 13:14 ESV). “But our citizenship is in heaven, and from it we await a Saviour, the Lord Jesus Christ” (Phillippians 3:20 ESV). As Christians we recognise that on earth, nothing is perfect anymore. Nothing is as it was when it was created. And “now (we) desire a better country, that is an heavenly: wherefore God is not ashamed to be called their God: for he hath prepared for them a city” (Hebrews 11:16 KJV).

As well as looking for our future eternal home, Christians are told to be at home in God. In John 15:4 Jesus said, “Abide in me.” To abide in is to make one’s abode in or to remain in. We are to be at home in God’s presence. We are to be at home in God. We are also to be at home with God’s people, in God’s house. “Blessed are they that dwell in thy house: They will be still praising thee” Psalm 84:4. I suppose that really it makes sense, in the context of believing in a Creator God, that we should feel at home with Him. The homes we have on this earth in this transitory life are simply foretastes of eternal home, eternal refuge, eternal safety, with and through the LORD God who made heaven and earth. May those foretastes feed our yearning for him!

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

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

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/