Coming home to autism: the parents’ story

Coming home to autism: the parents’ story

23 July 2018 – Tara Leniston and Andrew Fowler seemed to have it all, she an actress, he a property consultant and former reality TV star. The birth of their son Dylan in 2010 sealed the couple’s happiness but then two years later, the toddler was diagnosed as being on the autism spectrum. This is their story, first Tara, then Andrew.

Tara Leniston and Andrew Fowler

CHRISTMAS 2011 was the first time I started to notice that Dylan was withdrawing from everyone, including me. His eye contact started to wane and he was no longer responding to his name.

The whole family was visiting and whereas before Dylan had been a smiling babbling baby, loving all the attention my family lavished on him, he now started to scream when anyone touched him and preferred to hide under the table, playing with his cars.

At night, he would bounce for hours in his cot, flapping his hands and making sounds.

I first took him to the doctor a few weeks before his second birthday. I was told I was worrying over nothing and that he was a perfectly normal boy and all children developed differently. I went away still knowing something wasn’t quite right. I kept a diary of all his traits and started to observe other children in the playground.

Dylan with the family dog Mowgli

As a first-time mother, I wasn’t sure what was normal and what wasn’t. But it was clear from looking at the other children that Dylan was quite different. I returned to the doctor adamant that he must be going deaf, as he was no longer responding to me at all. The doctor begrudgingly referred me on to the ENT (ear, nose and throat) department. Dylan passed the assessment with flying colours.

After the assessment, I was met by a lovely paediatrician who had been observing our session and I was asked to come back a week later for a series of tests and for them to observe Dylan. Over the next few weeks and months Dylan was observed and I was then given the news that he was on the autism spectrum.

I asked if there was anything I could do; they politely told me ‘No, I am afraid not.’ They told me there was no cure and they had no idea of what the future would hold for him.

I walked out of there feeling like all the breath in my lungs had gone. I was scared and distraught, my mind flashing to scenes of the film Rain Man. Was this what my boy was going to be like? When I got home and put Dylan to bed, I sobbed and sobbed. My heart ached and I wanted it all to be just a bad dream.

The next morning, I woke up with a fire in my belly and my head racing with thoughts. I wanted to know everything there was to know about autism. What would help? What therapies should he do? How would I get support?

One of the first conversations I had was with my sister who offered me much-needed support and cried with me. Her husband was studying diet and nutrition at the time, and suggested I take Dylan off dairy, wheat and gluten. He told me the effects this has on most people’s bodies and that it might help Dylan; with this information I started researching some more. I promptly took Dylan off wheat, gluten and dairy, which was difficult as he had many food adversities and his main food staples were bread and milk. I found gluten-free options and switched Dylan from cow’s milk to goat’s milk. Within two weeks, Dylan’s eye contact started to improve and he started responding to his name. I couldn’t believe that such a small change could have such a huge effect. Maybe I could not cure autism but I could sure do as much as possible to give Dylan the best possible chance at living a fulfilling and healthy life.

The brain is at its most adaptable from the birth until the age of eight, so I had a few years to do as much as I could to give Dylan the best chance of not only being able to integrate into society but also to enjoy it.

Over the next few weeks a friend put me in touch with her friend who did play therapy with autistic children. She came and did a few sessions with him and referred me to some books to read, giving me games that I could play with Dylan to connect with him. If he didn’t want to be in my world, I would go into his.

I found a local play group for children with special needs and began going twice a week. I went on courses and read many medical books on autism and the gut. I got Dylan into a specialist school setting which he attended three days a week. It was intense as it pushed Dylan out of his comfort zone, but offered him a routine in which he thrived. Luckily, with the support of my partner, I was able to stay at home and research and go on these courses that would arm me with the knowledge that I needed to help my child.

I wanted to write this because I wanted to help parents like me. Hearing the news that your child has autism may be one of the worst things you will ever hear. The loss of control, the unknown, the what-ifs. There were books I read with diaries from other parents which offered some comfort but at the same time filled me with fear. There were also conspiracy theory books on why my child had autism and books with so much medical information or so full of words I couldn’t understand that it sometimes took me months if not a year to get through them.

Andrew Fowler’s story

THE BOOKS and literature offered to us when Dylan was diagnosed were confusing and depressing.

I remember the day Tara called on a cold January afternoon like it was yesterday. I was away on a work trip and I knew Tara was getting Dylan tested for his hearing. We had noticed that he wasn’t responding to us in the way that other children his age were. But when she called I could tell from the sound of her voice that something was wrong.

Tara and Andrew at daughter Naia Rose’s christening

All I heard Tara say was ‘They think Dylan has autism.’

I tried my best to reassure her and told her that I would be on the next plane home. I hung up the phone and everything went into tunnel vision. The world around me was a blur. So many thoughts rushed through my head.

‘What will happen to him, will he ever speak, will he be able to go to school/ college, will he ever be able to live on his own, will he become violent?’ I dived into my smartphone. There was so much varied information. It was mind-boggling and confusing. It became evident very quickly that there would be no quick answers to any of my questions. There was a vast range of possible outcomes to the condition. It was going to be a long and torturous road ahead to establish how Dylan would turn out. The thought of this prolonged period of not knowing how his condition would manifest itself in my son was immensely frustrating,

I felt out of control and angry. My method of dealing with this was to convince myself that Dylan’s condition wasn’t as bad as it was, that perhaps he just had some quirks and he’d grow out of it. We were lucky in that Dylan was diagnosed very young but because of this a lot of the traits hadn’t become evident or were evident in a cute, quirky or even funny manner. This played beautifully into the hands of my subconscious method of dealing with the situation – denial. Yes, I knew there were some issues and I wanted to get him the right treatment but I was struggling to see what all the fuss was about.

What happened next was partly circumstance and partly our personalities trying to deal with the situation. Tara, who worked as an actress, dropped everything as she turned her dedication to our son and the quest for diagnosis and understanding the disorder. We were lucky in that we could run the household on my income. This seemed great at the time but would become the cause of many arguments.

Tara Leniston with her three children Dylan, 8, Luca, 5 and Naia Rose 10 months.

As many men do, I buried my head in the sand a little – OK, a lot. I pushed it to the back of my head and thought I was fine. ‘I can deal with this.’ ‘I will be strong and supportive.’ I was starting my own business and felt the best thing I could do was work hard and pay the bills.

Tara’s dedication became an obsession, which was the best possible thing for our Dylan but it started to have a negative effect on our relationship. Looking back, I can understand all this clearly now. At the time I felt she started to shut me out and didn’t involve me. It was clearly easier for her to digest this emotional onslaught of information. I responded by pulling back further from her and Dylan.

A year into Dylan’s diagnosis, although things were strained, we decided the best thing we could do for Dylan was to give him a sibling. In the long run, this has turned out to be the best thing we could have done. At the time it heaped an immense amount of additional pressure on the two of us and would ultimately lead to our separation. It became a constant argument about whose life was harder, who had had less sleep and who cared more. We were both weighed down with the pressures of Dylan’s autism, a new baby and trying to make ends meet.

Around this time, work pressure had become extreme and Dylan’s autistic traits were really starting to manifest. As a two- or three-year-old toddler he had some quirky repetitive behaviours which were often cute. However, a four-year-old son who can’t really speak, won’t look you in the eye and starts to show autistic tics makes the ASD feel so much more real. My denial of Dylan’s autism was now turning to anger. I would work longer hours, go to the gym five or six days a week and, most notable of all, my drinking was intensifying; I was using it to escape.

My mood was crashing and I was struggling to get any excitement out of life. I was feeling numb. I went to the doctor and explained my situation, the immense pressure I felt and that I was struggling to be ‘present’ and feel much enjoyment with life. He prescribed me with antidepressants.

Tara and I were both in survival mode. Eventually something had to give and it was our relationship. I moved out.

I was in a dark place and knew I needed to sort myself out if we were going to try and rebuild our family. I reduced the drinking and got myself a psychotherapist. My two biggest breakthroughs came from diet and meditation and they both had an incredible impact on my ability to handle stress.

Dylan organising his day

The first thing I did for myself was learn to meditate. I never thought I would be able to as I’m a hyperactive person, but I downloaded the Headspace app and it proved me wrong. To put it simply, meditation is the single best thing I believe you can gift your mind. It has made me a calmer, happier and a more present person. Most importantly it taught me gratitude and the power gratitude has to reduce stress and anxiety.

As I got myself back together I had a fresh perspective on life. My resentment of Tara being able to stay at home and look after Dylan subsided. I started to respect what a great mother she was and how lucky I was to have her in my life. How lucky we were to have Dylan in our life. Yes, he had quirks but his condition was not life threatening.

Dylan and Luca play on the trampoline together.

He was still our beautiful child. Tara and I realised we wanted the same thing and that that was the best treatment and support that we could give Dylan: a loving, caring family surrounding him. After nearly a year apart, we were back together as a family.

Nothing is ever perfect so don’t get me wrong, it’s like two steps forward and one step back with Dylan; there are good days and bad days, but you learn to go with it.

It’s been over five years since Dylan’s diagnosis and I am only just starting to fully come to terms with this. I’m still not there yet and I wonder if I ever will be. If someone asked where I am in terms of acceptance on a scale of one to 10, I’m still at nine. It takes time, so you’re just going to have to take it easy on yourself; don’t force it and have faith, it does come eventually.

Orginal post: https://www.altogetherautism.org.nz/coming-home-to-autism-the-parents-story/

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