It was two years ago that Ruby Hamilton’s mother Stephanie noticed that there were distinct behavioural differences between Ruby and the other girls who had Down’s Syndrome. Fifteen-year-old Ruby, who was born with Down’s Syndrome, was training for the Special Olympics in the rhythmic gymnastics and team dance competitions, but she was clearly struggling to stay in line with the other girls.
"Once training commenced, she’d either be lying on her stomach on the floor, running to the other end of the gym to attempt to jump from the highest bars, or making her way to the gym stereo to select her own playlist," recalls Stephanie. Since the other girls were working to a certain order, she seemed like the troublemaker of the group – unruly, wild and carefree. "Yet she was able to pull a routine out of the bag having only watched it once."
This fuelled Stephanie’s suspicions that Ruby might be having behavioural issues apart from DS. It all came to a head when a parent of another child suggested that Ruby, who was lying down on the mat and acting lazy, was influencing her child to do the same. "This struck a nerve in me," recalls Stephanie. "I was torn between believing for so long that this was a behavioural issue and taking action to prove otherwise. As parents of our children we often face rejection at some point. Never did I think that I would feel like an outsider within a special needs community. I don’t believe anyone ever meant to make me feel this way, but it is a fact that I did feel that my child didn’t fit, and I deeply questioned my skills as a parent."
Working on her instinct that ADHD seemed to fit with Ruby’s behaviour, Stepahanie contacted the kidsFIRST Medical Center to get an assessment. A few tests later, Ruby was identified as being on the Autism Spectrum as well as having Down Syndrome.
The early years
Born in Abu Dhabi in 2006, Ruby was diagnosed with DS at birth, leaving Stephanie struggling for a while to shut off any negative emotions that threatened to erupt. Her husband James was a pillar of support right from the start, while her elder daughter Olivia, who was 5 at that time, had nothing but unconditional love for her sister. (Ruby also has a younger sister Lily, who is 11 now.)
"My father, however, didn’t take it as well at the time," says Stephanie. "I think this is typical of old attitudes and I don’t blame anyone for this. It’s simply an outdated belief from the era my father grew up in where people with DS were typically institutionalised."
Since the family did not know Ruby was facing dual issues, managing her boundaries and behaviours were quite challenging. From the age of three she had to be locked in her bedroom at night as she was prone to wandering around. She would also display highly impulsive behaviours that were not socially acceptable and regarded unsafe.
Though Stephanie read every book and tried various techniques to "discipline" and provide healthy boundaries, time and again she appeared to fail at these attempts. One Christmas eve they left Ruby at home with the nanny as the rest of the family went out to decorate gingerbread houses. "I still remember the salty stream of tears that flooded my face as we drove away after I explained to her again why she had to stay home due to her failure to repeatedly ignore my boundaries. I think it may have hurt me more than her," says Stephanie.
Early in Ruby’s life, Stephanie, in the course of reading up as much as she could on special needs children, came across a few articles about a dual diagnosis of DS and autism, which she felt resonated with her – only to be told by a doctor that she was over analysing.
"I also found dealing with outdated attitudes of medical staff surprising. This is not anyone’s fault, there is simply a lack of sharing positive accounts of people with Down Syndrome in the clinical setting," says Stephanie.
A study conducted a few years ago revealed that up to 30 per cent of individuals with DS can be on the autism spectrum. When Stephanie did find out about Ruby’s dual condition in 2019, relief washed over her as she realised that the proper medical intervention would help Ruby achieve better focus, curb her anxiety and help her reach her full potential.
"Mother’s guilt is a curse," she says, "and inevitably I found myself questioning and berating myself for not finding this out sooner. But once I looked into the condition, I realised how well Ruby has done against such a hefty challenge of a compound diagnosis. Many children are nonverbal, and it is not uncommon for them to adapt their homes to accommodate extreme behaviours, as well as many requiring care around the clock. Not knowing [about her issue] left me with trying to find solutions for behaviours associated with DS Ruby as an individual, without autism in the picture," she says.
Rising to challenges
The biggest challenges they faced stem from the same issue: lack of education, knowledge and experience in understanding children like Ruby. Initially there were a lot of sympathisers who visited her just after she gave birth to Ruby. "People kept saying they were ‘sorry’ for the baby, which was strange as [it was not a loss]. I found it so hard to listen to them but couldn’t articulate my feelings. People have the best intentions, I do believe that, however, there is a lot to be said for inclusion, integration and creating more experiences where everyone has the luck of getting to know someone like Ruby," says Stephanie.
Another hurdle came in finding admission into a mainstream school. Having around 40 rejections over the span of a year, it was evident that schools just weren’t willing to accept children that didn’t fit in the proverbial box.
However, Ruby got admission into Horizon International School where inclusion is working well for her.
"She is thriving at school with her current program. She attends some mainstream classes and also attends life skills classes from the ASDAN program for which she recently achieved a bronze award. She’s also pursuing Foundation qualifications in math and English in the UK curriculum and she will attempt a GCSE in dance, which is one of her passions."
Stephanie describes Ruby as a magnanimous force of light, who is forgiving and doesn’t take life too seriously. She’s also a Special Olympian having earned three medals for the UAE in the 2019 World Games in Abu Dhabi.
A few years ago Stephanie started a project called "I am ME" (most extraordinary), which aims to educate, advocate and mainstream beauty in difference. This platform aims to be a hub that supports people of determination with the Community Development Authority.
"This past year has got in the way of that but I’m hoping to find ways to make it work. I have always used my social media to help gain awareness for inclusion where I can as well. One of the biggest misconceptions is that kids with DS are always happy! And that people with intellectual disabilities were ‘simple’," says Stephanie.
"Because of this, little effort was made to understand them. I feel this is an ableistic attitude that stops people from truly seeing kids like Ruby on an equal footing. All people experience a myriad of emotions no matter what their intellectual abilities are."