‘My wife must regret spending her life with me. If she met someone different, she’d have perfectly healthy children,’ I told myself. ‘He is one of 34 people known to have this.’ My heart sank. ‘What? In the country?’ ‘No, in the world.’

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“Rhiannon and I are what you’d call childhood sweethearts. We were born a week apart and have always been inseparable. We first met at the young age of 15, moved in together at 18, and got married at 23. We both felt having children was a natural and exciting part of life. We couldn’t wait to be parents.

Courtesy of Lloyd Walton

At 26, that beautiful dream came true for us. From the moment we held our firstborn son, Duke, we felt that something wasn’t quite right.

Courtesy of Lloyd Walton

She took him to all the baby groups and various sessions that she could and tried to be the best mother she could be. However, Duke’s behavior was different than the other children. He would get easily upset, wouldn’t concentrate or engage with activities or other children, and he struggled to sleep at night. We were constantly exhausted and beat ourselves up. I remember thinking to myself, ‘Maybe we just aren’t the best of parents.’ I was sure that was it. Still, we tried our best.

Courtesy of Lloyd Walton
Courtesy of Lloyd Walton

Just one year later, we had our second child, a beautiful baby girl named Adarlia. She was born the exact day of Duke’s first birthday.

Courtesy of Lloyd Walton

We had always planned to have two children a year apart and couldn’t be more thrilled. Rhiannon planned to quit her full-time job as a branch manager to look after them in their early years.

Duke was struggling to hit all of his milestones. He was slow to learn movement and speech and still had difficulties engaging with others. Little did I know that Rhiannon was secretly researching online and had discovered a condition. One day, she showed me a video of children with this condition. My heart sunk. I felt dizzy. Straight away, I knew this was what our boy had. ‘It’s called Autistic Spectrum Disorder’, she said.

I didn’t know what this meant, so we decided to share our concerns with our families. We laughed it off and reassured others. ‘There can’t be anything wrong with Duke.’ Our children were perfect in our eyes. We couldn’t fathom the idea of change.

Courtesy of Lloyd Walton

As we learned the key behaviors in someone with autism, we started to notice things. The truth became loud and clear. We didn’t see it in one, but two of our children. Duke AND Adarlia. The looking at things through her peripheral vision, the leaning her head back and rolling her eyes whilst looking at sources of light. We were scared and confused about the whole situation. ‘We have to speak to a doctor about this,’ my wife said.

We were referred to a local Child Development Centre and Duke was put on the process of assessment for autism. He scored so low in everything. We were convinced he had autism but weren’t 100% about Adarlia. Suddenly, it became clear that this wasn’t just a matter of bad parenting. But what was the cause?

Rhiannon had this voice in the back of her head. ‘It must have been something to do with the birth,’ it told her. Duke was pulled out with forceps and was completely blue when he was born.
We started Adarlia on the assessment process just to check as well. We had our suspicious about her too. These processes took months. Eventually, the day of the results fell upon us.

We went to the meeting hoping they would label him as autistic just so we could more easily get the help we needed from local authorities. Then the words came. ‘He has Autistic Spectrum Disorder,’ the doctor said. We felt instantly relieved. We were sad from the circumstances, but so ready to get help. However, it didn’t stop there. She looked me in the eyes and handed me a pamphlet.

‘Duke has an extremely rare chromosome disorder,’ she explained. ‘He is one of 34 people known to have this disorder.’ I asked, ‘What? In the country?’ ‘No, in the world.’ I was speechless. My mind was spinning. I instantly felt dizzy and sick. I couldn’t take any more information in.

The doctor continued speaking but her words were just a noise to me. We drove home and sat and studied the leaflet. He has something called 16p13.11 microduplications, a fault in his DNA. People with this disorder tend to have autism. This was just too much to take in. Our lives had become very difficult and we were stressed and tired. Soon after, I began to have panic attacks and struggle to sleep.

Alcohol helped me. I began to rely on those few cans at the end of every day just so I could sleep at night. For nine months, I was sick with anxiety and depression. Eventually, I went to counseling and started to learn how to deal with the stress I was feeling. I had to re-learn how to be happy again.

By Christmas of 2014, I was finally feeling more myself. Soon after came the news and surprise of baby number three. I remember thinking, ‘Great. We are going to have 3 children under 5 in a two-bedroom house.’ I knew we had to move. This only added to the stress.

Courtesy of Lloyd Walton
Courtesy of Lloyd Walton

During this time, Adarlia was also diagnosed. We were told she also had the same chromosomal disorder as Duke. ‘This means that it has been inherited by Rhiannon or yourself,’ they said. We went for testing and, sure enough, I had it.

Courtesy of Lloyd Walton

I was racked with negative emotion, mainly guilt. Guilt that our children had autism because of me and my faulty DNA. ‘Rhiannon must regret spending her life with me. Maybe if she met someone different, she’d have perfectly healthy children,’ I told myself. I went more counseling, this time with a genetic counselor. She talked a lot of sense into me and gave me some reassurance.

Nine months later, baby Aeris was born. Of course we had her tested straight away, and in some cruel twist of fate the odds were again against us. She too had the chromosomal disorder. We presumed we would then be raising 3 children with autism. My anxiety spiked and I went to cognitive behavioral therapy. Through this, I was pushed to do things I enjoy again, like going to the gym. I hadn’t realized it, but we had slowly stopped being who we were. We had no hobbies and very few friends. We felt lonely and isolated in all of this. We struggled to even get out of the house because of the children’s difficulties. Life was tough.

I went back to work in customer service, sitting before a computer and a phone day after day. I couldn’t concentrate. I was nearly falling asleep driving into work. I felt permanently shell shocked. I went off sick again and it was decided that I would work just one day a week whilst Rhiannon’s mom helped me out. Rhiannon started working full time for a local organization to help parents of young people with disabilities. I was a full-time dad. I devoted my full energy and attention to the kids, meanwhile Rhiannon was sitting on local boards to try and change services in the area to help people like us. She’s a determined warrior.

Duke is 5 now and attends a local special school.

Courtesy of Lloyd Walton

We get some support from the local authority and have built ourselves a new network of very good friends. All who have children with special needs. Our kids have gone from not being invited to parties to going to one at least every month because of our large new group of friends. Adarlia is 4 and we are attempting to put her through a mainstream school, but with full-time, one-on-one support. Girls with autism tend to be able to adapt into social situations better than boys and are better at masking their autistic traits.

Courtesy of Lloyd Walton

Aeris is 2 and, as far as we know, does not have autism. She is smart, caring, loving and brave. We are very lucky to have our beautiful surprise baby.

Courtesy of Lloyd Walton

She has already taken on roles for her older brother and sister. She is their voice when they have no words. She comforts them when they are distressed and she holds their hand when they need help, guidance, and support.

Courtesy of Lloyd Walton
Courtesy of Lloyd Walton
Courtesy of Lloyd Walton

Things are not perfect now, but they are getting much better for us. The children have medication for their sleep and we are in a bigger house (although still not quite big enough). We are starting to be able to give back some of the knowledge and advice we have picked up along the way on our social media accounts. In doing so, we’ve made so many connections with likeminded parents. We are proud SEND parents, Special Educational Needs and Disabilities warriors.

As a family, we are strong and like to spend all of our free time trying to help others in a similar situation to ourselves. Giving back and helping others makes us feel great and makes us feel like excellent role models for our three beautiful children. We are extremely proud of all three of them. We celebrate even the tiniest achievements or development. They make us happy each and every day.

Life is still stressful and difficult, but we are managing the best we can. We get out the house every weekend, we go on holiday and live life to the fullest we can. The future is bright and we hope to inspire others that are in that dark situation we were in right at the beginning.”

Courtesy of Lloyd Walton
Courtesy of Lloyd Walton

This story was submitted to Love What Matters by Lloyd Walton of Manchester, UK. You can follow his journey on Instagram here and here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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