Learning from Lucy

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Bringing up a daughter with learning disabilities has been the ultimate lesson in life, writes mum Samantha Bowen

I wasn’t present at the time of my daughter’s conception; I was recovering at home 12 miles away from the IVF clinic when she was being “created”. And yet the bond was there from the start, a strong committed love willing her to bloom and come to life, to reach her full potential as a human. I sometimes wonder if this distant connection helped build my resilience for the road ahead. I have certainly had time to reflect on what the terms “full potential” and even “human” mean to me since then, and I’ve had long battles with my inner self over both.

She stole the room’s attention before she was returned to my body. A TV monitor fixed to the wall in the IVF theatre room displayed her in all her naked glory, as she divided in front of our eyes from a two-cell embryo into a four-cell one. We were told this was something very few IVF parents ever got to witness but her next trick took my breath away. On implantation into my womb lining, the ultrasound monitor glowed as a bright white spark flashed on the screen. I gasped in amazement, taking it as a sign that she would live, and a couple of weeks later, I was not surprised to learn that our fertility treatment had finally worked.

Unicorns
We had absolutely no idea at the time though, that the reason for this struggle and indeed for Lucy’s slow embryo growth was an unbalanced translocation of her chromosomes resulting in a unique diagnosis. As admired and mysterious as “unicorns” are, giving birth to one was uncharted territory, with no-one able to offer any prognosis or even advice. There are no syndrome groups to join, no national days to celebrate and in the absence of understanding comes judgement and guesswork from others.

This started very early on for us, about an hour or so after her birth. Lucy and my husband had been whisked away to the special care baby unit, leaving me alone on the maternity ward. A paediatrician stuck her head through a gap in the curtains around my bed and declared, “I think there is something genetically wrong with your baby”. Still under the influence of the morphine given to me during my C-section, I mutely asked if she meant Down’s syndrome, to which she replied: “Yes, I think your baby has got Down’s syndrome”. Then just as quickly as she had emerged, she vanished behind the curtains and left me alone to digest this information for an hour.

The SLC label doesn’t do justice to Lucy’s cunning

As it happens, it was misinformation as Lucy does not have trisomy 21, or Down’s Syndrome. Unbelievably, though, this wasn’t the last time she would be labelled with it. Over the last ten years, we have had several doctors wrongly assume her diagnosis based on appearance alone and, more alarmingly, strangers have run up to us when we were out shopping to pronounce that they also have “one of those” – a “Down’s” cousin, sister or uncle in their family. It’s like a misplaced “welcome to the club” greeting, which can be particularly poignant as, in many ways, this would have been a much easier outcome for us.

I’m a firm believer that all children are different and, especially for those with a syndrome diagnosis, it is important to see the human rather than the condition. There’s no doubt that for me, being part of this group would have helped at times.

Deceptively different
In the early days, despite her very small size, Lucy was just like any other baby and even though we got her diagnosis within weeks of her birth, to the outside world she was no different. I wish, looking back, that I hadn’t known for the first year but then at six weeks old, she was also diagnosed with hip dysplasia and placed into a Pavlik harness that kept her in a spatchcock chicken position for two months, so there was no blending in at mother and baby group for us from then on.

Here again, the judgement spread through the group like a fever, as if Lucy’s disability could be catching. Fear, and possibly guilt at the relief they felt, caused the other new mothers to treat me as a pariah, which further added to my feelings of isolation. Perhaps unsurprisingly, I suffered a breakdown when Lucy was four months old. They were dark times indeed and I am thankful for my strong family, as the support just wasn’t offered by any of the formal systems that really should have stepped in from the time of Lucy’s birth.

As the months progressed and the milestones remained unmet, Lucy’s disabilities began to reveal themselves little by little. The subtlety of how this was referenced by medical professionals seems darkly humorous, but I rallied against it at the time. “Developmental delay” wrongly suggested she’d “get there in the end” – that things would develop but just take a bit longer and that as a parent, I needed to be more patient. At around two years old when speech and language therapy started, the learning delays were focused on her communication ability. Simple turn-taking through play therapy was supposed to create building blocks for speech, which in Lucy’s case has never come. This relied on Lucy being interested in engaging with a particular toy and wanting to interact with the human offering it. However, she got bored easily and was a good judge of character, finding some professionals almost as irritating as I did!

She gets what she wants most of the time

Shifting labels
We found a great special school which she started attending aged four. Overnight, “developmental delay” was re-labelled as “learning disability” and at one point, a teacher referred to her as having profound and multiple learning disabilities (PMLD), which floored me. I wasn’t prepared for a label that would fix her disability to a position on a continuum. I wasn’t perhaps prepared for a diagnosis of her learning disability and, by virtue of that, her learning potential.

She has since then been reclassified as “severely learning disabled” and I’m old and wise enough to know that this is probably accurate while, at the same time, it isn’t. The label is given due to her inability to verbalise with words, or visibly process information at a level anywhere near what is usually expected for her age. It doesn’t however, grasp her keen sense of investigating (nosiness), her brilliant sense of humour or her cunning and strategic planning skills that enable her to get whatever she wants the majority of the time. She is quick witted, funny, well-liked and has a well-developed sense of self and, dare I say it, a good attitude. She is empathetic to others who are upset, “reads” people and situations accurately and is at times a wise soul and older than her years.

Changing my worldview
Being Lucy’s parent has affected my own outlook and also my vocation. I am a museum professional and work in a sector focussed on learning about things, but I have time and again questioned the methods employed to both deliver and assess this. My experience has lead me to develop work with special needs students and teachers to utilise museums in different ways, unlocking not only the potential within the learners but also within the museums’ collections and staff. I now speak nationally at conferences on this topic and wrote a “toolkit” for the museum sector on engaging with those with SEN and disabilities, which is being used as a blueprint for other sectors, such as archives. All of this however, has come from my own learning, through raising Lucy and our shared experiences. It has emerged as I have re-evaluated what learning really is.

I no longer believe that our traditional methods of measuring learning truly capture all that is going on. I have a postgraduate degree, but Lucy has taught me more about being human and the importance of life than any qualification ever could. It is difficult to put it into words, but I feel that she has a deeper understanding of why we are here. Lucy is unbridled by needing to learn or use words that others understand in order to communicate with them. This does not mean she doesn’t understand what I or others are saying to her. She grasps the meaning of life and is “in the moment” more fully than most of us.

The phrases we use as euphemisms for intelligence and discovery – such as “bright spark”, “lightbulb moment” and “flash of inspiration” – are themselves illuminating. Perhaps it was indeed a sign that Lucy started out for me as a spark of brilliance on that ultrasound monitor; because of her skills at shining a light on the true meaning of life, she is and will continue to be my teacher and my guide as we travel through it together.

About the author
Samantha Bowen is a parent to a child with severe learning and physical disabilities. As Museum Development Officer for Kent/Medway, she established a project (and a practical toolkit) to improve museum access, and the experience, for children with SEN and disabilities. The charity Learning Disability England has been involved in facilitating this article. 

website learningdisabilityengland.org.uk
Twitter @makedoandSEND

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