The temptation to call Sandra Borg a superwoman is very much there. After all, the life that – together with her husband Jesmond – she built for daughter Katrina is pretty awe-inspiring.
Katrina is five and a half years old. She lives with Down Syndrome, is on the autism spectrum, and she radiates joy. Given that society hardly makes it easy on individuals considered atypical, witnessing this joie de vivre is beautiful, so calling Katarina’s mother a superwoman would certainly be apt. But in reality, Sandra doesn’t have any access to super powers to help her along. She is simply another woman who is doing more than the best she can with what life gives her.
Katarina was diagnosed with Down Syndrome at birth, but confirmation that she is on the autism spectrum only arrived a few months ago, after a period of particularly challenging behaviour. One diagnosis is tough enough to cope with, two are… disheartening? Catastrophic? But that’s not Sandra’s reaction.
“I won’t lie, at first I found myself in a bit of a dark ‘tunnel’. But thankfully we all bounced back and realised that the new knowledge was going to help Katarina considerably. In that sense, it was positive,” she tells me.
The news did bring with it a fresh set of challenges. Sandra explains that Katarina doesn’t fit the precise profile of people who are on the spectrum. Although almost non-verbal, she is very communicative and affectionate, and does things that go against the stereotype.
“The two conditions interact with each other, so this makes it difficult even when it comes to planning therapies and finding the right medical professionals. Now we seem to have found a system that works, and all therapies have an autism slant. Even her occupational therapist specialises in autism, and having this new direction has improved matters considerably,” she tells me.
It has certainly made Katarina’s life more pleasant, too. I ask Sandra how come she wasn’t referred for testing earlier and she explains that people with Down Syndrome tend to suffer from over-diagnosis.
“A lot of the challenges, or medical conditions, that arise will be simply attributed to Down Syndrome by a section of the medical profession. Moreover, despite regular check-ups doctors tend to very much focus on their one area. So, to give a hypothetical example, if she’s getting her heart checked, no-one will be looking at possible autistic traits,” she tells me.
Even worse, there is an expectation that someone living with Down Syndrome simply has to accept these conditions as part of the diagnosis. Sandra recounts how respiratory and hearing problems are very common to the condition. In some cases, however, they can be corrected.
“Katarina went through a very bad patch when she suffered from acute sleep apnoea. I’d be lying in bed, listening to her choking and coughing, and then suddenly… silence, which meant she wasn’t breathing, of course. I’d count the seconds and then I’d shake her awake if it lasted too long. Those were the kind of respiratory problems she was facing, and yet I was being told to wait, that she would outgrow it and that this was normal for children with Down Syndrome,” Sandra describes matter-of-factly.
Then a hearing impairment developed, which made the use of a hearing aid essential. Again, the mother was told that this was ‘normal’. At this point, Sandra decided to do her own investigations.
“It took a lot of research and even more chasing to get a referral for surgery. I had to literally find out everything I could about it, and push for it myself, and it took ages. Eventually I managed to find a doctor who agreed that surgery was indicated. And sure enough, it solved the problems,” Sandra says.
Of course, other children with less proactive parents might not be so lucky. And this is the crux of the matter – society and the medical system often create more problems for those who live with a disability, rather than making things easier.
“Unfortunately, it’s endemic. The society we live in is full of these little things that make it very difficult for anyone who is taking care of a disabled person to cope. To give you a simple example, Katrina requires regular therapy. Therapy is usually available only in the mornings, as are government services, when most people are at work. Malta only caters for five unpaid days of care leave” Sandra explains, adding that her own role within the Commission for the Rights of Persons with Disability gives her the advantage of an employer that is more aware.
“But not everyone has this advantage. Having a daughter with Down Syndrome who is also on the autism spectrum means that even the most simple of chores becomes complex, which is why we need a rethinking of the way society functions. I never take a day of leave for myself, just to have a rest, it’s all saved for any emergencies that do crop up. Being mother to Katarina involves a lot of advocacy work,” she tells me with an unexpected grin.
Sandra believes that this need to rethink the system starts with the birthing process itself. She recounts how she was back home in two days after Katarina was born, expected to cope with the fresh diagnosis by herself.
“You do get a bereavement midwife, and she was lovely. But unfortunately it was nowhere near adequate. The need for thorough mental health support remains. It also falls upon you to set the tone for the entire family. If you’re very depressed, everyone else will also be depressed around you. If you handle it well, everyone follows suit. It’s a lot of pressure on the parents,” she explains.
There are the good parts, of course. The older Katarina got, the more things started settling down. Sandra describes her as a peaceful girl who is great company. Evenings tend to be mother and daughter quality time, while Sandra’s husband is at work – “it’s like having my little best friend there”, she tells me.
But she is also adventurous, loves the outdoors and is crazy about swimming.
“She probably got that from Jesmond, he’s the hiker. In good weather they will go out for super-long walks in the countryside, then finish off with a pizza. With me, she gets the quiet downtime.”
She is also a well-behaved child, Sandra tells me with quiet pride, which is probably why the sudden behavioural issues raised a flag and prompted the autism test.
“Since being diagnosed we have all been doing much better. School is back to normal and she is getting the right treatment. We do avoid triggers and noise, and now we understand where certain behaviours, like repetitive movement, stem from. We also have coping techniques to instil a sense of calm.”
The main thing they needed to understand, Sandra says, is that Katarina experiences the world in a very sensory way, with sounds and textures highlighted.
“If you give Kat a piece of paper, for her it’s something you crumple to hear the sound, or something you flap to create the wind movement, it’s all about texture. But if there’s over-stimulation you can literally see how it overwhelms her.”
Sandra wasn’t always as matter-of-fact. She confides that, when Katarina was about four years old, she kept wondering why she couldn’t seem to reach her daughter, and what she was doing wrong.
“Now, with the benefit of an actual diagnosis, it seems so obvious what was happening. And at some level I did know. I had been questioning it since she was about two but I kept putting it at the back of my mind. I just couldn’t handle two issues so soon after each other.”
By then, Sandra was in a better place to deal with the news. Which is just as well, given that even here, mental health support is lacking. She tells me that they received the official diagnosis by email.
“I can’t over stress the urgent need for mental health support. Even just thinking about the future is fraught. I know Kat will be happy as long as we are around. But what will happen after that is something that I can’t even bear to think about as yet, because I risk going back to that dark tunnel. So, I keep that door closed and try to think only about the present,” she says poignantly.
Unfortunately, the current solution remains institutionalisation, although Sandra says there is a huge drive towards keeping people with a disability within the community using the help of personal assistants. It is a process until we get there – she explains that institutionalisation kicks off very early in life. Some kids with a disability get sent to a different school, then to a day centre, then to a respite home…
“This requires a complete rethinking of the system. We start with education, which will then lead to possible employment and independent living with support. You can’t just wake up one day and decide that homes will not be around anymore.”
“Dual diagnosis is completely uncharted. There’s no map for parents to follow, we have to figure it out with trial and error, as we go along. And the problems are never-ending. You solve one, and another two crop up,” Sandra says. “I don’t view my daughter as the problem. The problem is the way society fails to support people like her and me.”
She then refers to an equally problematic narrative, the one that sees children with Down Syndrome ‘marketed’ as being close to the normative, propagating the belief that a diagnosed child is necessarily a high achiever, a sports champion or whatever.
“It can be dangerous, because what about those children who don’t fit into this narrative? Some kids will never be champions in anything, but their value as persons is intrinsic. It’s not related to achievement, and it shouldn’t be questioned,” she tells me passionately.
But she has words of encouragement for other parents who may find themselves crippled with fear about not coping, or not loving their children enough.
“You will cope, you will manage, and it never changes how much you love your child.”
How do other countries support parents?
Most countries offer a system of paid and unpaid leave, coupled with flexible working hours and guaranteed job security should they need longterm leave. Italian unpaid carers, for example, receive up to three extra days of paid leave per month, and they can even take up to two years’ unpaid leave as long as this is staggered. The paid leave is covered by the national security agency.
Many countries offer unpaid leave. Spain, for example, offers up to two years of unpaid leave, while Irish carers can claim up to 104 weeks with guaranteed job security. France only offer up to three months. In Germany, carers can remain absent from the workplace for up to 24 months while keeping their job. (Source: Employersforcarers.org)
A support network
With mental health quoted as being one of the biggest challenges faced by those living with Down Syndrome and their carers, many countries have a structure to offer emotional and well-being support.
In Australia, each state is covered by an association that connects families with each other and organises events, workshops and fundraising opportunities. There is a strong Facebook community for online support for those who find it difficult to attend events in person.
The US take it a step further, focusing on helping those with Down Syndrome contribute within the community via the National Down Syndrome Society Employment Program. The programme collaborates with private and public employers to guarantee access to competitive employment opportunities and training.
In the UK, the Down Syndrome Association offers a diverse range of training programmes with the scope of finding employment. These programmes are offered free, or at a heavily subsidised rate and can also be done online. Jobseekers are then matched with employers through WorkFit, a dedicated and personalised service. The association also organises regular parent-carer support group meetings
In Malta, the Down Syndrome Association organises events and offers a support network.