Anyone who’s seen the Netflix series Atypical will have an inkling of the ups and downs of life with a family member on the autistic spectrum. Real-life Cape Town mother Andrea Hart contacted Thislife Online to tell us about her experience of life with her son James (30), and what it has taught her. Andrea is married to James’s dad Ian and they also have a daughter (33) who’s an occupational therapist
Sharing life with a son on the autistic spectrum is full of challenges but has been a ‘special journey’, says mother Andrea. Read on to discover her message for everyone who knows people caring for a family member with autism or another disability | Photo: Ronelle de Villiers
IMAGINE YOU’RE BOOKED on a flight to Italy. Your excitement knows no bounds. The time arrives and you’re on your flight. Suddenly, there’s an announcement that the flight’s been diverted to Holland and you have no choice but to accept the status quo. You’ve prepared for all aspects of Italy, you have no knowledge of Holland and no desire to go there. You’re disappointed and disillusioned.
That, in a nutshell, is what we faced every time James reached a certain age: teenage years, 21, adulthood. Each time, we realised there was no way James would ever achieve the appropriate mental milestones. He can’t be relied on to behave appropriately in social situations, and we can’t expect to take him somewhere without him attracting attention. Inappropriate laughter, noisemaking or ‘meltdowns’ are the order of the day and can happen one after the other.
Early on, Andrea and Ian realised that many milestones would always be beyond their son James
James was quite placid as a baby. He talked at 18 months and walked at nearly two. Everything seemed on track.
An obsession of his from tiny was the vacuum cleaner. At our neighbour’s house, he would make a beeline for her broom cupboard to see it. Other passions included lawnmowers, and he once tore across the road when he saw one, with me in hot pursuit.
But we didn’t pick up that anything was particularly significant in this behaviour.
It was only when James had started pre-school and was about five that we had any inkling there was anything ‘different’ about him. The school noticed some unusual behaviour such as James not participating in group activities and asking repetitive questions, and suggested an assessment.
We took him to a paediatrician who asked us a number of questions, and spoke of his low muscle tone as his chief difficulty. Via a series of referrals, we were given the news that James had a pervasive developmental disorder (known as PDD).
A young James with his sister. His pre-school suggested an assessment when he did not like to participate in group activities and repeatedly asked the same questions
Initially, the Harts were told James had a ‘pervasive developmental disorder’ | Photo: Ronelle de Villiers
Our feeling was one of relief: at least we had a diagnosis. But then we heard the name Vera School mentioned. This was a specialist school in Cape Town for children on the autistic spectrum. We looked at each other in bewilderment. Was James autistic?
No-one answered us at that stage, but it was recommended that he attend Vera School.
relief and bewilderment
The following year, Vera offered him a place. At the age of seven, James was put onto medication to assist him as he struggled to control his behaviour and the teachers struggled with him in the classroom.
He was then, and is still now, in need of quite a bit of daily medication. We are ably assisted by the staff and psychiatrists at the Alexandra Hospital outpatients department.
James with father Ian. Autistic children are all individuals but largely differ in three ways from neurotypical children, says his mother Andrea | Photo: Ronelle de Villiers
I remember reading the following in an encyclopaedia around this time: AUTISM IS INCURABLE AND PARENTS NEED ALL THE HELP THEY CAN GET.
At this point I’d like to tell you a few facts about autism. A very apt definition of autism is a ‘triad of impairment’.
There are three areas of major difference in the development of the autistic child compared to that of a neurotypical child. These are:
- Social Interaction: difficulty following social ‘rules’, appearing aloof or indifferent to others
- Communication: challenges with verbal communication, such as repetition of words or phrases, and inappropriate topics. For example James would say, ‘Can you put a peach on a spark plug?’ A serious question for him, to which none of us had an answer!
- Imagination: in many instances, children with autism can be very creative in an artistic or musical sense. However, they usually experience difficulty in being able to imagine possible outcomes, which can often lead to anxiety.
each child is unique
It’s important to understand that if you have met one child with autism, you have met that child. Each autistic child is unique and will have different strengths and weaknesses.
Twelve years passed for James at Vera, where he learnt skills such as taking turns, tying shoelaces and following basic instructions. He also grasped the basics of reading and writing, though will read from a book only with some persuasion!
Some of James’s interests: he loves all music, from Britney Spears to Mozart. When he went to the show ‘Joseph’ at Cape Town’s Theatre on the Bay, he sat (for once) riveted. At the end he announced, ‘That was a good show.’
At Cape Town’s Vera School, James learnt to read and write and follow instructions | Photo: Ronelle de Villiers
He enjoys the outdoors. A morning hiking is usually a good bet for him though extra medication may be needed.
James and I were introduced to Faith and Light, a global organisation for the disabled started by a French couple, who struggled with community acceptance because of their own disabled children until they went on a pilgrimage and became part of an accepting Christian community.
healing power of God’s love
His greatest interest there was the table laden with eats and juice, which he kept heading for at intervals during the meeting. Group activities were always hard for him and he escaped these by shouting (or screaming) and running. But I drew a lot of encouragement from other parents of disabled children. There’s so much love between the people in the community and I felt so much love from them. I think we all felt the healing power of God’s love.
A global organisation called Faith and Light offered love and encouragement to Andrea | Photo: Ronelle de Villiers
Nonetheless, at any time James could have a quick, fierce meltdown. Normally he then became calm, but at times he remained upset for long periods. It was horrible for everyone.
The family took strain from the constant management of James. The greatest challenge was always needing to consider where, and for how long, we went out as there were always repercussions. James could exhibit strange behaviour in public or have a meltdown in the car if we had slow traffic, or on family occasions where he might struggle to cope. As a family we battled to have time for each other.
But we somehow muddled through. Sometimes I feel guilty that our daughter didn’t get much quality time from me. She was independent from an early age. Personally, I was always emotionally exhausted.
a peaceful ‘home from home’
When James left school at 18, we faced very few choices in Cape Town. There were so few adult facilities around for adults with autism. But a psychologist at Vera suggested we investigate Trevelyn Lodge near Vredenburg on South Africa’s West Coast as a possible fit.
Trevelyn is a peaceful ‘home from home’ farm-type community which was set up over 10 years ago for adults with disabilities, both mental and physical. It started with a small number and has grown to cater for over 50 adults.
Initially, we felt apprehensive about James going to somewhere residential, but as the school psychologist had made the recommendation, we went to check it out. The people at the home were very welcoming and said that it was James who’d determine whether he fitted in or not.
He stayed for a week the first time, and then longer over time. They looked after him as much as his own family could have, even though they found him quite a handful.
James with carers at Trevelyn Lodge, a peaceful care home where he has spent the bulk of his time for the past 10 years. In addition to a wide variety of activities, it ‘offers him a social life with people who don’t judge his capabilities,’ says Andrea
The home is peaceful and has a large recreation room with chairs, tables and a TV corner. There are some handcrafted items and some of the residents’ own handwork adorning the walls. The garden is waterwise with aloes, cactus and lavender bushes, and there’s a large patch of white flowers at the moment. There’s also a play area with swings and climbing apparatus and a large ‘food tunnel’ and the residents enjoy fresh farm vegetables amongst the bought stuff.
Each day the staff dedicate time to the residents with puzzles, Lego, books, games and outdoor activities.
James enjoys wandering about and is very active.
James comes home every few weeks for a visit. Here, he attends his sister’s wedding
The community spirit is special. I’ve seen other residents actively welcome James back if he’s returning from a visit home. James is a barometer of his environment, and both Ian and I are happy that he is settled in this peaceful place. It offers him a social life with people who don’t judge his capabilities, but largely accept him as he is. The peaceful country environment plays a big role in helping keep James calmer and it offers him a routine and a number of activities that it would be impossible for us to provide. It’s a a great relief and reassuring to have him there.
James has now been at Trevelyn Lodge almost 10 years and has settled in well. He comes home regularly for short visits, although during Covid we have to rely on video chats and few visits, which is proving hard.
If he becomes restless, he comes home and we alter his medication until he’s settled.
When I look back I remember feeling quite desperate at times; sometimes it was like being in a nightmare. However, I have some good memories too. One is when one of our church ministers came over and annointed James, chatting to him and blessing him. It was incredible to have that acceptance. He said: ‘Don’t worry if James speaks a bit loudly, I’ll just speak a bit louder!’
Many times, I’ve prayed for wisdom in the situations I faced with James. I remember the psychiatrist saying to me that I had a calming effect on him.
Parents and relatives of a child with autism or another disability need all the help we can give them, says Andrea. Not everyone can find a home for their child or family member | Photo: Ronelle de Villiers
I suspect equally I could wind James up at times! But whenever I prayed for the children, things would change for the better. I tried to pray before I acted, so that I wouldn’t act out of frustration. I trusted God and feel that without Him, I would never have kept as calm as I did.
Drawing strength from God has kept me going. I believe He equips us for what we’re going through, to carry on no matter what the odds.
Another huge support has been my family. They all accepted James. There’s a lot to be said for friends, too, some of whom were a bit nervous to look after my ‘live wire’, but helped with our daughter instead.
My message is to support families who deal with disability. Not everyone can find a home.
To get this message out, I started speaking at Rotary Clubs and it turned out to be quite interesting and helped me believe there’s light at the end of the tunnel. I’m shy by nature, but public speaking made me bolder.
With James settled at Trevelyn, I have had time for some interests. I sing in a chamber choir, play guitar and am learning the piano over Zoom. Being in nature is the most meaningful experience to me.
It’s been a tough journey to navigate, but Andrea has realised over the years that showing unconditional love for James means not focusing on his disability or worrying about what people think. Music has helped her build into her life | Photo: Ronelle de Villiers
Ultimately, I’ve come to the realisation that James has taught me how to show unconditional love, which in this situation means not to put the emphasis on his disability. It’s been hard to do this because I’ve been very conscious of what people think, but I’ve journeyed a long way and managing my expectations has been key. I remember, once as we left a sports evening where James had been quite anxious, this small voice came from the back of the car: ‘I’m sad’. I almost crashed the car, I was so overjoyed that he had expressed an emotion, even though it was a sad one.
When I recently asked James, ‘Why do you think you were created?,’ he simply said, ‘To love.’
I prefer not to dwell on the tough moments of my journey. Rather, I choose to look upon it as a special one. My email address is firstname.lastname@example.org and I’m always happy to meet with anyone who’d like to chat over a cup of coffee.
FOR THE LOVE OF JAMES
(a poem Andrea wrote for James’s 21st birthday)
21 years of loss and gain
21 years of lessons and pain.
We have journeyed together on this train
of life and love, and on through the tunnel we strain.
Always your enigmatic smile and the epitome of the phrase
‘laugh like a drain’
as some unseen thought just pops into your brain!
Painted on the wall of today:
a young man pacing, pacing.
Part-words uttered and repeated.
Skipping and bouncing,
HAPPINESS of 21 on a glorious, God-given Cape Town day….
SUPPORT YOUR ATYPICAL COMMUNITY IN CAPE TOWN
- Here’s a selection of Cape Town enterprises and homes which cater for people on the autistic spectrum, for families to investigate and members of the public simply to support
LALALICIOUS Discover this amazing catering company and café in Plumstead offering training and work opportunities for young adults on the autistic spectrum, and watch the video Thislife Online made of our visit to it
LUCY G This Kirstenhof restaurant /craft café is staffed by volunteers and young adults with disabilities who prepare food and serve the customers who come to relax over a coffee or crafting. Read our interview with its founder Helen
THE VINE COMMUNITY in Constantia is a small, secure community home for adults with special needs where they can live independently
HUMBERSTONE HOUSE is a group care home for intellectually challenged adults, situated in Plumstead.
THANK YOU to The Rotary Club, which supplied Trevelyn Lodge, where James now lives, with stationary bicycles