Sep 30, 2016
My four-year-old son Lumen is autistic. Although I’ve mentioned it on this blog previously, I’ve not devoted a post to it. Until now. It is not out of embarrassment that I did not write a post; it is not because I felt it wasn’t worth sharing. It wasn’t because I was still processing the diagnosis or coming to terms with how our lives would change. It was because I was experiencing Lumen and his world, living a new life as the mother of an autistic son.
And living this life takes every ounce of what I am made of. It takes hands that – while they know how to touch because the memories of touches are in the bones, the arteries, the tendons – must learn to touch differently, to feel the body in an alternate manner, to understand the intricacies of pressure, to better comprehend the connection between the hands and the rest of the body.
It takes ears that can appreciate the rhythms of otherwise indecipherable speech. Ears that are open to learning an entirely new language, one which often sways between silence and sounds that I desperately attempt to interpret. Ears that train themselves to hear quiet when there is no quiet.
To be the mother of my autistic son requires a mouth whose most oft-spoken words are ‘Mama’s here, I’m right here’, ‘You’re okay’, and ‘I love you’. A mouth which expresses reassurance and security and never barks or screams unless it is to save my son from danger. A mouth which smiles, which kisses a lot.
Being Lumen’s mother necessitates eyes that see everything, frequently the invisible or barely visible. Eyes that discover a different realm in low light, in shadows, in glows. I have realised that my favourite colour is blur. It’s not a hue familiar to many by name, but they know it, they’ve seen it. It’s on the visible spectrum, comprised of multiple wavelengths. For me – especially as the parent of an autistic son – there is splendour in blur. There are no absolute delineations, and this vagueness peaks my curiosity. Being Lumen’s mother requires patient eyes that wait for eye contact. Eyes that cry and cry and cry. Lumen needs my eyes to serve as his because he is sometimes somewhere else.
Hypervigilance is a constant state when one is the mother of an autistic child, but more than finely-tuned senses, being Lumen’s mother demands a heart that is always open. A heart that is prepared to beat faster, to skip beats, to be shattered and smashed, to spill over, to burst. With my son, my heart seems to have grown additional valves, valves which communicate with his own valves. We sense each other. By heart.
Being the mother of an autistic son means a life of appointments, of therapy, of setbacks, and of achievements that others who are not parents of autistic children might have difficulty understanding. Being Lumen’s mother means physical pain – biting, scratching, pinching, kicking, hitting, and extreme sleep deprivation. It means emotional turmoil. I have felt frustration, exhaustion, desperation, and jubilation – all in a space of seconds.
Being Lumen’s mother means garnering strength and often lending my strength to others, regardless of whether they ask for it. When I was in the process of trying to have Lumen diagnosed, I understood I would have to have the fortitude to handle whatever was thrown my way. I knew I had enough strength in the reserves to care for my little family, but what concerned me was whether I had enough strength for others. For those who judge, who fear, who lack empathy and compassion, those who may be in denial, those who are cruel. I wanted to have enough strength for those parents who – after we toured a school which caters to autistic children and adults – broke down and left the tour in tears. For those who feel bad asking me if it’s okay to touch Lumen. For those that see him in a nappy/diaper and a buggy/stroller and may make the assumption that I’m a lazy parent. I want to give them the option to judge, as we human beings have to make judgments for survival, but to then have the strength to ask me questions, to perhaps even criticise me so that it will give me the opportunity to explain autism, a condition they may not know much about.
I want to give Lumen’s older brother Enlai strength. The siblings of autistic individuals are very special souls, and it takes a lot of vigour to attempt to live in two different worlds simultaneously. It takes strength for Enlai to witness me not always knowing what to do, to observe me feeling defeated on particularly difficult days. It takes strength to know that he’s not forgotten or less worthy of my time and attention, but that he understands the world as the majority of humans do, and because his autistic brother understands it differently, Lumen needs me more. It takes strength for Enlai to be alone a lot of the time, starting from seven years old, because I need to constantly be by Lumen’s side.
Being the mother of an autistic son means worshiping the apparatus known as the trampoline. We don’t have a coffee table, we have a trampoline. And it means no need for a gym membership because the combination of jumping with Lumen on the trampoline, chasing him when he happens to be in Usain Bolt’s league, pushing him on the swings for hours at a time, and holding all 50 lbs/22 kg of him while dancing because it is one of the things that makes him most happy, keeps me fit.
Being mother to Lumen means living the life of a mermaid. If there is water, we will find it. In the sink, in the tub, in a bottle, in a sea, an ocean, a river, in a fountain, a pool, a hose, a faucet. It means putting a bikini on in winter because Lumen wants to swim. It means sometimes running three baths a day. And being the mother of an autistic son means always bringing an extra change of clothes because puddles are not always meant for splashing in with wellies on, but for sitting in with your bum and attempting to swim in them.
Having an autistic son means gratitude. Gratitude for the little things, for the ability to find humour in almost everything. For the fellow autistic parents who only need to see the look on my face to understand, for my friends who are so supportive and willing to learn more about autism. For Lumen’s therapists who have transformed our lives. It means gratitude for my own parents who taught me to never think I was better than anyone else, to always keep an open mind, to have compassion, to offer a hand, a shoulder, words.
Despite the difficulties, I feel very fortunate to have an autistic child. His world is fascinating, a repository of the overlooked and unappreciated. My son enjoys watching film credits, from beginning to end, whatever the film. And watching with him has allowed me to learn what gaffers and foley artists are. I have a newfound appreciation for all the efforts that go into making a film. He likes to watch escalators from an aerial perspective. And again I find myself appreciating something I often take for granted – mechanical engineering.
Lumen’s world is void of filters, which I have learned actually makes life easier. It’s less a Harold Pinter play – with its subtleties of language and gestures – and more a straightforward affair. Essentially, my son does what he wants, when he wants, where he wants. This has required some adjustments on my part, including not feeling so embarrassed or concerned with possibly upsetting others. Simultaneously, it has made me question so many things. Why do we force our children to adhere to so many rules and regulations, without first questioning such rules and their purpose? Why isn’t spontaneous dancing in the rain while drinking the falling drops on the Life 101 syllabus? Why shouldn’t we make guttural sounds while flapping our hands when walking the streets if we feel we need sensory input or if we want to express ourselves but don’t know how with words? Lumen is not harming anyone. And if there are some folks who do not like what they see or hear, do not want their children exposed to certain behaviours, or feel threatened in any way, there is always an option to look away or to walk away.
But I believe better options are awareness and empathy. Try to imagine the exclusion my autistic son may feel now and will surely experience later. Try to imagine what it might feel like to be stared at or teased. Or to be talked about as if he isn’t in the room because those around him don’t think he can comprehend what they’re saying. Now try to imagine being his mother and having your heart break every time this happens. Try to imagine how it feels when he has a tantrum from sensory overload, and onlookers cannot peel their eyes away, but cannot bring themselves to offer a hand. Try to imagine a bus ride with my autistic son who sings most of the journey, and an exiting passenger saying he needs to learn manners.
I don’t understand autism wholly. None of us do, completely. It is a relatively young diagnosis, in that the first one was only in 1943. And because it is a spectrum – Autism Spectrum Disorder or ASD – no two autistic individuals are alike. My son needs a lot of sensory input whereas another of our autistic friends is averse to sensory input and has to have the lights low in his home, favours ear defenders, and does not like to be touched. They are both incredible, beautiful boys, as is every autistic individual. I was touched when my friend recently sent me this message: “…It is good that the world is finally accepting that humans exist on other planes than the few prescribed by society. That our brains work on many levels and, given more options to develop and grow, is essential in understanding all the ways people see, thrive, and contribute to our existence.”
Autism is a serious, lifelong disability which can have a profound effect on individuals and their families. Many autistic individuals face daily adversities and require a lifetime of specialist support. One quarter of people with autism speak few or no words, and only 15% will ever work full-time. And autistic individuals die, on average, 18 years earlier than adults who are not autistic.
If you are interested in supporting autism research, look no further! I am running the Royal Parks Half Marathon next Sunday, 9 October, on behalf of Autistica, and would love your support. I am running for my autistic son Lumen, for my son Enlai, who is the most amazing, most patient, most caring big brother, for all autistic children and adults, for their families. I am running for all those – researchers, educators, therapists, psychologists, psychiatrists, employers, volunteers – who have dedicated themselves to understanding autism and to helping those with and affected by autism. There are more than 1 in 100 people in the UK living with autism, and the costs associated are £32 billion a year in the UK – more than cancer or dementia. Yet, as a nation, we only spend £4 million a year on research. Autistica funds research into the causes, diagnosis and treatment of autism.