You are a handful, my beautiful Lumen, in demeanour and now in years. I celebrate you every single day, all 37 trillionish cells you are composed of, your spiral curls, your smile that your brother says is the greatest smile he has ever seen, your movements, your hands, your infectious laugh which we should bottle up and distribute as a health supplement, your autism, your eyes and all the realms they see, your silence, your affection, your dozens of food allergies, your sincerity, your way.

You are that dancer – and spinner and jumper and hand flapper – who observers might think is crazy because they are incapable of hearing the music you hear. You are teaching me to listen to those overtures, those concertos, those symphonies you receive, and the songs become ours. You are that untrained coryphée who emulates a Nureyev you’ve never seen perform, using the spotting technique during your own form of pirouettes. I’ve witnessed you astound many an onlooker with your ability to turn and turn and turn and never fall over or suffer from dizziness.

I celebrate all your melodies and harmonies. And certain strangers do, also – the ones that smile at you when you sing your songs as we have our adventures around town. You’ve had two amazing music therapists – one who made us realise that music may serve to open the door to communicating with others, and another who complimented you on your perfect pitch. I’m happy you have expanded your preferred musicians to now include your two current favourites, Oasis and Regina Spektor.

I celebrate you, my non-verbal son, who is just starting to use words in relative context, words you’ve chosen based on what you’ve heard and on your own interpretations, such as ‘Emergency’, ‘Nanny Plum’ (character from the cartoon ‘Ben & Holly’s Little Kingdom’), and your brother’s name ‘Enlai’ when you are in sticky, frustrating situations. When you have had enough of anything, including your mama chatting to a friend, you say ‘Bye’ repeatedly. Not so subtle, but kudos for getting your point across. When you said ‘tickle’ – a word I’ve uttered to you countless times while tickling you and your brother – as you giggled mischievously and pulled the blanket over your head while we were playing on the bed, I cried. When you told your sitter ‘I miss you’ and hugged her after not seeing her for a month, she and I both cried. When you walked out the door with her and said to me ‘Love you’, I cried uncontrollably. You’ve not said ‘tickle’, ‘I miss you’ or ‘Love you’ since, but you saying them and my hearing them exists.

I celebrate your silence, which has taught me more about myself and humanity than I could have imagined. It seems ironic that your ma has a degree in communications, used to read the dictionary for fun, and is a writer, and now spends most of her time with you, often in silence. It serves as a basis for comparison, and I now have an appreciation for the other end of the communication spectrum, namely the economy of language, the gesture, the picture symbols. You and your ma have a quiet dialect in common – after a traumatic event as a child, I went through a period of choosing not to speak. You, my sweet Lumen, remind me of the candour, the poetry, of the countless stories that exist when a space is silent. We just have to learn to fine tune our ears.

I celebrate your strength, your resilience. What you’ve been through and continue to be confronted with on a daily basis is not for the faint-hearted. Your therapy appointments, doctor and dentist appointments, hospital visits – of which we’ve had close to 200 over the last year – haven’t dampened your spirits. You may have broken several blood vessels in your face when you screamed as I and three doctors and nurses had to hold you down to administer medication, but the vessels healed, and you’re here. You showed both your exasperation and physical power when I, two phlebotomists, and a play therapist worked together to take your blood. Although we were both covered in sweat from the ordeal, the mission was accomplished, and we walked out of those hospital doors and straight to the park. I carried your 24 kg/52 lb body the entire mile walk because you needed me to. You communicated with me by applying your version of an affectionate chokehold, and I tried to sing to you ‘Hush Little Baby’ until you gave me a look like, ‘That’s all you got right now? Pretty unoriginal.’ So I opted for ‘Home on the Range’. When we reached the park, you ripped off your plaster in one go, threw it on the ground, and ran like the wind.

I celebrate the way you look in my eyes, and the way you wrap your arms around your brother’s waist and place your head on his chest. And the way you look up at him like you are the luckiest little brother in the universe. You are.

I celebrate your bath time. I think you’ve had more baths than any child your age. And the way you help me clean the walls, the floors, the counters, even the hallway leading to the bathroom, with your splashing, is much appreciated. I may shake my head and murmur some words when you decide to jump right back in the bath in a fit of laughter, after I’ve dried you off and put on your various prescribed lotions and potions, but secretly, I love your cheeky manner.

I celebrate your love of churches. You don’t seem to be fussed about the religion, but you do like an impressive altar and stained glass windows. I have watched your behaviour in many a church, and it always makes me wish I could know what you know. We recently visited Saint James’s Piccadilly, and you made your way to the altar of the empty church. You knelt for a long period, stood up, sang a melodic tune, and then twirled at least 20 times. As we were walking out, a couple sat in the back pew smiled at us. They said you were wonderful.

I celebrate your appreciation for public transport as being more than just a means to reach a destination. You aren’t a fan of waiting for buses, but when you step in one, you find a seat next to a window, and although I can’t know exactly what you see, the various scenes seem to make you content. And you like the escalators and tunnels in tube stations. You look at everyone and every poster, and you run your fingers along the textured walls. You sometimes touch the fabric of a fellow passenger’s clothing or bag, especially those with intricate patterns or floral prints, and I always hope it doesn’t upset them. When one woman didn’t welcome your touch, I explained to her that you were autistic and didn’t understand social niceties, such as not touching strangers just because you are attracted to their garb, and she said she didn’t care and that you should keep your hands to yourself. I thought of her face and her words for the rest of the day, wishing she did care. When you started to tug on the strap of one man’s rucksack who sat next to you on the train, I told him you were autistic, and he offered to take his rucksack off so you could touch all of it. At his stop, he said goodbye to us and wished us a lovely day.

I celebrate your love of Lego, buttons, plastic food, earbud tips, and fake jewellery. Except when you put them in your mouth. All day, every day. When I try to swap one of your many ‘chewies’, you usually throw it and look at me as if to say, “If I wanted to chew on that, it would be in my mouth right now instead of this button.” I even celebrate your stubbornness. Most of the time.

I celebrate your starting school this September. Although the battle to complete your Education, Health, and Care Plan is one for the books, there is only one school I wanted for you, and my Lumen, this is the school you will be going to. I’ve only met and spoken to the headteacher and your class teacher a few times, but I can tell you they are both incredible human beings. You have not even started school yet, and they have already gone to great lengths to prepare for your arrival, including asking staff to attend a session in which I discussed how I handle your 45+ food allergies. They have asked what cleaning products we use at home so they can ensure they use the same safe products at school. They have said that I can call the school as often as I like throughout the day to check on you. On your second trial day, you were running around the outdoor play area. I stood next to your class teacher, discussing some of your likes and dislikes, as I watched you jump on the hammock swing. I have pushed you countless times on similar swings throughout London, but there I was, witnessing you sitting there with nobody pushing you. I couldn’t stop crying, and your teacher consoled me, asking if I was crying because I thought you would have an anaphylactic reaction while at school. I told her that my fear was that you would wonder if anyone would ever push you on the swing. Or that you would not be happy.

You’ve shown such happiness in your short life, despite the many adversities in your path, and this is how I always want you to feel. I don’t want you to feel you need to conform to the ways of my world, or your brother’s world, or anyone else’s world. I want us to continue to learn more about your world – a delicate, extraordinary world.

Happy Birthday, my Lumen, my light. I am so fortunate to be your mother.

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.

 

I have yearned for art over the last 365 days more than food, more than sleep, sometimes more than air. Just as I want my sons to appreciate art, to allow it to rouse or soothe them, to occasionally fall asleep or wake thinking of a particular artwork, to trust it when they can’t trust other humans or when they may doubt themselves, I have sought art to help me make sense. I have used it as my drink, my drug, my altar, my here and my now, and as a substitute for my if and when. It has served as my absolute over the past year.

My younger son Lumen is allergic to over 30 foods and has suffered anaphylactic reactions previously. While he did not suffer any this year, we found out he has new allergies. After the doctor informed me, we went from the hospital to an art gallery. After another doctor diagnosed him with asthma this year, following several A&E visits, two admissions and having to learn the difference between his four different inhalers, we went to an art gallery. Before and after Lumen’s many doctor appointments and various therapy sessions — occupational therapy, speech and language therapy, music therapy — for his autism, we visit art galleries and museums.

And when my older son Enlai has shown that his love of electronics in all forms seems stronger than his love of living, breathing beings, we go to art galleries. We discuss everything on the way to and from these galleries — religion, sport, literature, friendships, music, family, food. We talk about what an amazing, curious, funny thing life can be. He often gives me a difficult time because he’s not keen to go to a gallery, so we compromise. We go where he wants to go first — anywhere but the flat, in front of a screen — and then he indulges me with a gallery. And after we view the artworks, usually a few hours or a day later, he says thank you. Thank you for introducing him to something that made him think differently, that made him learn and value, that made him see possibilities.

Earlier this week, I went to a discussion between the artist Olafur Eliasson and Tim Marlow, the Royal Academy’s Artistic Director. I was touched by many of the things Eliasson related, including a couple of stories which pertained to children. He said that he believes his first leanings towards becoming an artist may have been after his parents divorced when he was eight years old. His father was an artist, and he thought that to win his attention, he would have to become a very good artist. He also said that when he was young, he was into breakdancing. He would walk around his house as if a robot, imitating breakdancing moves he had seen. Eliasson said that rather than tell him he was being ridiculous, his parents supported him. He spoke about their courage in championing their son in doing something nobody else they knew was doing, something that likely seemed very odd to other family and friends. And the artist noted that this is what parents should be doing — being their child’s or children’s advocates in whatever creative venture they decide to partake in.

I have no desire for either of my boys to become artists. I want them to become themselves. I want them to feel happy, to love and feel loved, to feel as though they have so much living to do, that they couldn’t possibly fit it all in in their lifetime. But I would like for them to understand that art is always there for them; it is a breathing creature full of stories, of adventures, of delicate gestures and horrid atrocities. It is full of tales of light and darkness, silence and screams, of madness, of bliss, of pleasure and pain that can only be depicted with a line or colour, form or space, rhythm or texture. Art is full of survival, of the ability to affect change. I want them to know that when artists such as Alberto Burri, a former doctor, and Sam Francis, who served in the US Air Force during World War II, sought to recover from and make sense of their worlds after the war, they both turned to art. I want them to be aware that there are countless artists who suffer from debilitating physical and mental illnesses, who rely on art to help them cope.

Enlai and Lumen know they can count on me for anything, including to be cheerleader extraordinaire for all their endeavours. And if they want something additional to depend on, and they decide to trust in art as I have, I hope they will remember with fondness the times we visited galleries together. I wonder whether Enlai will recall the moment we walked out of a gallery a few months ago, and he noticed me crying. He said, “You needed that, didn’t you, mom?” I responded, “Yep.” He said, “Art, huh?”. I said, “Yep. Art.” And we held hands and walked home.

This US Mother’s Day, I want to share with you some of the artworks that my boys and I have seen over the last year that have moved us, artworks that have given me air and optimism.

 

 

 

 

 

 

 

 

 

I am happy and proud to share the second post of my son Enlai’s blog, Au-tastic.  For those of you who have not yet read his first post, he has decided to write a blog devoted to his experience as the older sibling of his three-year-old autistic brother Lumen.

I have found his blog so heart-warming — from his observations as an eight-year-old to his obvious love for his brother. There could not be a more fortunate mother in the world.  My two beautiful, amazing boys…

Spirits

Some think autistic people are able to communicate with spirits. People believe this because autistic beings will just talk into the air sometimes. They will probably be talking to themselves, but they could be communicating with spirits. Some of autistic people’s emotions will come from communicating with spirits. In fact, one night my mum took a video of my little autistic brother awake in the middle of the night. My mum and I watched the video the morning after and saw orbs floating around him. As the orbs were floating around my little brother, he was singing and talking, possibly communicating with the spirits in the orbs.

Reflections

My autistic brother likes his reflection because it tends to calm him down. It also is one of the only things that will get him to stay still in one spot. Usually if he sees a relative, he will also stay in the same spot because he can see himself in the people that he is related to.

Trampolines

Some autistic kids like bouncing on trampolines. My little brother would jump 24/7 if my mum and I didn’t take him outside. My brother likes to bounce on one knee every once in a while. Keeping a trampoline out for my little brother to use whenever he gets stressed or just to go for a long or a short time jump is a reliable, useful thing and it makes him really happy.

Books

Usually, autistic children learn to say words quickest when there are very few words so it’s not too complicated. Autistic children like my brother like things simple. The book should also have bright and clear pictures. Lastly the book should have a few flaps or textures or sounds because it will keep an autistic child still long enough to start looking at the book and eventually read the book.

 

 

If you’ve followed my blog, you will already know my older son Enlai.  He’s now eight, going on 20, very mature, and the very best big brother.  Enlai has decided to start writing his own blog about his little brother, Lumen.

My little Lumen, as you may also know from my blog, is allergic to a multitude of foods and has suffered anaphylactic reactions, has recently been diagnosed with asthma, and is also autistic.  In his blog, Enlai has decided to write about being the older brother of an autistic sibling.  I am eager to share his first post.  My sweet, sweet Enlai.

 

Introduction
This blog will be about what autism really is and what it truly means, and how it can change your life or even the world possibly. Also, as much as I would love to be a scientist, I am sadly not, so some of these facts might be disagreed with, and if you do disagree with some of these facts that is perfectly fine.

Autism
Firstly, I must mention that autism isn’t quite a disease, no, in fact autism can be quite a positive thing depending on how you approach it. I have a little autistic brother called Lumen so I am experienced just in case you were wondering.

How it began
When I first found out that my brother was autistic, I was about six years old. As I was so young at the time I didn’t quite get what autism was, and what it meant. After about one year I began to realise how he was different and by the time I turned eight which is my current age, I really properly understood. And hopefully you will know just as much as me eventually.

How it’s different
Autism isn’t quite a normal trait because autistic people often develop ‘normal’ skills such as talking later in their life than we would. But it’s not always predictable, as some autistic youngsters are extremely intelligent. Some autistic kids actually develop certain skills earlier than we would, such as musical talents and sensory awareness.

Likes
Autistic children usually like the feeling of different textures and vibrating tools too. But too much of anything can cause screaming or tantrums, meaning autistic kids can be quite sensitive or experience sensory overload.

 

My boys like to touch.  And when it comes to art, they’re too often told they can look, but not touch.  I get it – art needs to be intact and preserved so its owner can protect his financial investment or sentimental chattel, or so future generations can have an opportunity to observe the piece as its creator likely intended.  I personally think there is beauty, there is historical reference or, at the very least, there is an intriguing story, to fragmented art pieces.  Consider Kintsugi or the Parthenon sculptures.  Or maybe Rembrandt’s Danae and Night Watch, or Duchamp’s Fountain.  There are tales of sieges, of madness and obsession, of acceptance and change, of vandalism.  But I imagine I’m in the minority with my affection for the broken.  And the account of an energetic, curious, possibly rambunctious child damaging an art piece may not be as fascinating as the narrative of a demented geologist attacking a work with a hammer while yelling “I am Jesus Christ” a la “Pieta”.

For the most part, my little fellas understand they can’t touch.  They’ve been to countless museums and galleries, and when those moments occur when they can barely resist the temptation to glide their fingers over a texture, climb on a sculpture, or make hand shadow puppets to interrupt a film projection, there are usually cordons, invigilators and their mama to help them practice self-control.

So when an exhibition like Carsten Höller’s “Decision” at Hayward Gallery comes along, I am a happy (read: more relaxed) mama.  Touching is allowed, even encouraged.  There’s interactivity, there’s physicality.  And very appealing to me, there is the observation of my children and others intermingling with the works, sometimes laughing, sometimes embarrassing themselves, sometimes suffering negligible injuries, and most times questioning.  Questioning what they are supposed to do or whether this is art.

Right before entering the exhibition, we were handed guidelines highlighting the physical and experimental nature of the show.  One piece has a minimum height and maximum weight requirement, another requires you leave all bags, coats and loose items in the cloakroom or locker, and for some of the works, visitors are urged to refrain from “using” them if they have an existing condition which might be exacerbated.

 

There are two alternative entrances.  We – two mothers, two seven-year-old boys, and one two-year-old boy – chose the risqué one, a work called Decision Corridors.  It is a pitch-black (except for miniscule lights which take time for your eyes to actually see once they become used to the darkness), confined corridor that twists and turns.  Höller describes this work as an architectural intervention which “delays the entrance to the exhibition and prolongs the transition from the world outside the gallery to the topsy-turvy world within.”  I was somewhat nervous because, truth be told, I was carrying my strong, heavy, autistic two-year-old son Lumen whose reaction to different scenarios cannot always be predicted.  I was wrong to be nervous.  Lumen loved the piece.  In my arms, he glided his fingers across the walls of the corridors, laughing.  He didn’t wriggle, he didn’t try to jump out of my arms.  The other two boys were justifiably disoriented, nervous but pretending not to be, bumping into each other, and shouting each other’s names when they became separated.  This was my favourite piece in the show, this indoor, covered, inky hedge maze which does not cater to claustrophobics.  It asks one to lose his reliance on sight and instead engage his senses of hearing and touch.

 

The second work to stir our imaginations was the timepiece, Pill Clock.  A single red-and-white capsule drops from the ceiling to the gallery floor every three seconds, the interval of time Höller suggests is the “length of time in which it is possible to create the impression of presence”.  Amassing in a rising pile, the pills provide a visual indicator of the passage of time.  All of this was lost on the boys.  They saw a pile of pills they were allowed to touch, pills which they could put in their mouth and swallow should they choose.  A water fountain is conveniently provided on the wall next to the pile for those who choose to ingest.  My older son Enlai asked what was in it, what the flavour was, what its effect would be, whether it would hurt him now or damage him later, whether I would be trying a pill.  I told him that I would not be trying a pill.  He asked if I was scared, and I responded that fear was not a factor, but that I was not a pill-popper, and that I wasn’t keen to swallow something whose exact makeup I wasn’t aware of.  We then discussed hallucinogenics, addiction, pharmaceutical companies, headaches and vitamins.  And he decided he would take a pill.  My mom friend decided she would, too.  Her son didn’t.  For us, this piece was more about decision than time.

 

We then happened upon a large room, a small portion of  which was used to offer a long bench, the entire length of which was used to supply about 10 seats with corresponding headsets and earphones.  In these headsets and earphones was The Forests, a 3D, dual-screen video piece which splits our vision in two as one eye is guided to the right around a tree along a path, and the other eye to the left.  Höller intends for the work to be an experiment in seeing double, in looking at two things simultaneously.  My mom friend and Enlai commented that the soundtrack was haunting and the images confusing.  My little fella Lumen had no interest in engaging with the piece, but he and I both appreciated that he was allowed to run around the sizeable space without interrupting anyone’s experience of the art as they all had headsets and earphones on.  The invigilator smiled at me, perhaps sensing that this boy gives his ol’ ma a good workout chasing him around.

Intrigued by the sound of music, we walked a short distance to another room and were now immersed within Fara Fara, Lumen’s favourite piece.  It was a dark room, with visitors sat on the floor between the two screens which, seemingly in unison, depicted the music scene in Kinshasa, the capital city of the Democratic Republic of Congo.  Fara Fara means “face to face” in Lingala – a Bantu language with over 10 million speakers – and is a musical competition which was formerly used as a means of resolving disputes.  Congolese music, according to Höller, is “very different in structure” from Western music, zigzagging between different styles.  For me, there is something about percussion and its infiltration into one’s bones.  Lumen danced the entire time.  He held his hands up to me, and I picked him up, and we danced together.  My mom friend danced, and the two older boys were embarrassed by the three of us.  I imagine Höller was only trying to share the Fara Fara world, but in so doing, he opened some of our ears, and awakened our hips and shoulders.

After walking upstairs, we had to make the decision whether we wanted to wait in an hour queue to experience Two Flying Machines, a simulate flight offering the opportunity to soar above the traffic of Waterloo Bridge while those in the queue, those looking out the window, and those below, look on.  The machines, described as a “combination of carousel, paraglider and motorbike” were designed by Höller to allow contemplation.  The “rider” contemplates his surroundings, but the observer of the rider contemplates the rider and his reactions to his surroundings, as well as other observers’ opinions of and comments on the rider.  The boys had neither the patience to queue or to wait for their moms to queue, so we made ourselves content watching the other adventurers in the air.

Instead, we played around with The Pinocchio Effect, a combination of vibrating devices and drawings which guide you to hold your nose with your fingers on one hand while using the other hand to place the vibrating device on one of your upper arms.  Höller based this piece on an experiment by a psychologist who discovered that it was possible to modify the way we perceive the size of our  nose by rousing certain muscles.  The artist says his own device works by influencing proprioception, a fancy word for body awareness.  Proprioception, considered one of the seven senses, is an unconscious perception of movement and spatial orientation which allows us to locate our bodies in space, and to be aware of where our limbs are in relation to one another.  When you are the mother of an autistic child, you know a thing or two about proprioception as many people with autism have difficulty processing everyday sensory information and tend to be hyposensitive or hypersensitive, meaning they may stand too close to others or bump into things, or in the case of the latter, have difficulty with manipulating small objects, such as buttons.  Yes, my little Lumen liked this artwork.

 

Body parts still feeling as though they were vibrating, we then opted to experience Half Mirror Room and Dice (White Body, Black Dots).  Reminiscent of a ballet studio sans the barre, the mirror was designed to create a double of the gallery and everything in it.  It has a certain appeal to the narcissist and the voyeur.  While Lumen jumped in front of and made faces in the mirror, checking to see if his reflection would follow, the older boys writhed through the holes in Dice.  As if a jungle gym created by a Yatzhee aficionado, Dice fulfilled the older boys’ need to climb, squirm, and hide.  Only two are allowed in Dice at a time, and the boys took full advantage of this, saying they may just camp out overnight in this square tent with circular windows.  I recall seeing this piece at Frieze 2014, and just as it seemed there, it is a component of a distinctive playground, one in which Höller is “using other people’s kids in order to fill the sculpture with life”.

 

A few steps away, we grabbed a pair of goggles hanging on a wall and listened to the invigilator’s directions before being lead to the outside terrace.  This piece, Upside Down Goggles, was the older boys’ favourite.  Goggles on and perplexed as to which was the right way up, they attempted to reach out to one another, to high five each other, to walk around the terrace without hesitation.  I told Enlai to look up at Höller’s  Adjusted Hayward Sign, and because the sign depicts the words “Hayward Gallery” upside down – which would mean it was displayed right side up when viewed through the goggles – he said he thought his goggles weren’t working.  I watched one woman walk around the terrace with such uncertainty, she only took about three steps.  I watched one grown man fall over another.  This was some Laurel and Hardy stuff, and I was enjoying laughing at the expense of others trying to make sense of an upturned world.

 

And then, ladies and gentlemen, came what many consider the pièce de résistance of the exhibition – the Isomeric Slides.  Not dissimilar to his Test site in the Tate Modern Turbine Hall some years back, Höller constructs slides which ask us to look at them as both artworks and functional objects, and then to consider whether we’d like to take advantage of their functionality as a means to exit the exhibition.  Höller says the spiralling transporters introduce “a moment of playfulness” to the gallery’s brutalist architecture.  We all decided that we did indeed want to indulge in a bit of play.  The little munchkin didn’t meet the height requirement so he wasn’t allowed, even on my lap.  My mom friend and the two older boys went ahead, my son running excitedly up the stairs, which are visible to everyone in the room.  I could hear shouting and nervous laughter, from the top of the stairs all the way down the slide.  As soon as I knew they reached the bottom, Lumen and I took the lift down to meet them.  On the way out, I may have done some begging to a couple of different invigilators to please let me back in the gallery to take a ride down the slide myself once I put my son in the care of my friend.  When I saw the three slide-riders, they were laughing and seemed energised.  I enthusiastically ran back in, and the begging paid off as I was let through.  Up the stairs, and the slide minders told me to slip my legs through a potato sack-like cloth appendage, cross my arms over my chest, grab the top of the slide and catapult myself down.  Heading south, my belly tickled and, unexpectedly, screams and laughter came from my mouth.

Whether you can call the pieces in this exhibition art or not I think is irrelevant.  Call them what you will if you desire a label, and while searching for that label, enjoy yourself and enjoy your children.  Keep an open mind.  Engage your senses and your curiosities.  Experiment and laugh.  And be grateful that artists like Carsten Höller exist.

The exhibition is open until 6 September.  For more information on the exhibition, click here.

When my ex-husband Keith and I decided to divorce, I thought my chances of having a second child at my age were no more.  When I reminded myself that there are other ways to conceive a child besides the conventional way, within a marriage, with a husband, I thought about my life and how I hadn’t taken many traditional routes, hadn’t done things in orthodox ways, and didn’t altogether comprehend the lure of the mainstream.

When I became pregnant with my second son, Lumen, the thing I feared most was telling Keith.  We were still very good friends, trying our best to co-parent our son, Enlai, and I didn’t want to hurt him.  I expected him to be angry, to say I was irresponsible, mad, selfish.  I assumed he’d say that he would not be offering any help with my unborn child, and justifiably so.  This is precisely what happened when I informed Keith.  I was in tears; he stormed out of my flat.  The next morning he showed up at my flat with bags of groceries and said that I would need to look after myself if I was pregnant.

From the day Lumen was born, Keith has treated him as his own son.  He adores Lumen, and Lumen adores him.  My Lumen, my light, my love, the below is for you, from Keith, the man in your life who knows you best, who has been there for you from day one, who will do anything for you, who gives you a love so rich, so full.

 

 

A couple of years ago, prodded by my now ex-wife, I wrote a few words for my sweet and beautiful son Enlai on Father’s Day, something in retrospect I’m very glad I did.  It stands as a postcard in time and it comforts me to think that Enlai may peruse it, decades hence, and at such time it will give him some degree of solace, amusement and inspiration.  This Father’s Day, I would like to do the same for Enlai’s little brother, my sweet and beautiful Lumen, who will be three next month, otherwise known to me as The Luminator, Lumes, Fruit of the Lumes, The Supergeezer and sometimes, quite simply, Supergeeze.  I’m not Lumen’s biological father.  But I do very much consider myself Lumen’s spiritual father.  With the exception of his older brother Enlai, now seven, Lumen has spent more time with me than with any other male.  He’ll always have a warm place in my heart and in my life and I’ll always have his back.

Several months ago, when I was informed that Lumen was possibly autistic, it broke my heart.  I rode around London in the rain on my motorcycle for more than an hour, crying like a baby into my helmet.  I cried so much I got a sty on my eye.  My first thought was “What will become of this sweet and beautiful boy?”, “What will his life be like?”, “Will he be happy?”, “Will he feel loved?”.

About a week later, it hit me, like a two-by-four to the back of the head.  What a shallow and presumptuous tit was I.  I knew little about autism but what I had seen was alarming.  Over the years, I had seen several severely autistic children, and my heart went out to these children and their parents.  It must take great courage and strength to be such a child or the parent of such a child, I thought at the time.  How do they cope?  And I couldn’t even imagine what it would be like to not know whether or not your son or daughter was happy, to never see him or her smile or giggle or experience him or her giving you a cuddle.

But this has never been the case with Lumen.  He has always been and continues to be an extremely happy and affectionate child, taking delight and giggles in his own amusing observations, and, like a true mensch, he always gives deep and soulful hugs and pats on the back.  He is also a strikingly handsome young tyke and he has the fitness and physical dexterity of a young Hercules.  In fact his physical agility, especially at such a young age, is astonishing.  He’s more coordinated and physically adept than most adults I know.  In observing Lumen, a friend of mine, a former professional ballerina, said that, in her country (the former Soviet Union), Lumen would be snatched up at this age to be trained as a ballet dancer or professional athlete.  And, perhaps more to the point, Lumen has also always been brilliant company – affectionate, clever, funny and buoyant and yet exuding a Zen-like calm that Kane from “Kung Fu” would aspire to.  In fact, the older I get, the two people on the planet I get the biggest kick out of, and enjoy spending the most time with, are Lumen and Enlai.

There are, regrettably, a million and one ailments and afflictions that can befall a child.  Some will suffer, and even be overcome with, life threatening diseases and conditions, some, as they grow older, will struggle with depression, with their looks, their perception of their own intelligence and abilities, the way they perceive others perceive them, their lack of love, feelings of loneliness, sadness and alienation.  Some will succumb to madness or unhealthy and destructive addictions. Some will never be content or happy, no matter what positive things they have going on in their lives.  All is possible, for better or worse, in the nature-and-nurture lottery.

I immediately set about tucking into the available literature on autism.  I found it amazing that, even at this point in time in the so-called Information Age, what the medical community knows about autism, hard cold facts and not mere conjecture, would struggle to fill the back of a postage stamp.  Many of the methods of “treating” autism, devised, prescribed and implemented by doctors (many of whom with impeccable credentials) were shockingly barbaric and disgraceful.  Many of these methods have since been totally discredited, although, astonishingly, vestiges of some of these pernicious practices live on still.

There’s a saying that “The Harvard man acts like he owns the place and the Stanford man acts like he doesn’t give a goddamn who owns the place.”  In this respect, I am, most definitely, through and through, a Stanford man.  I had a very unusual mother, as eccentric as they come, who taught me, from a very young age, to question everything always and refuse to be spoon-fed and bamboozled by other people’s dogma and drivel.

At this point in time, autism is described as a spectrum, various individuals falling on to it at one place or another, from the very mild to the very severe.  As I devoured the literature on autism, I found the subject increasingly fascinating.  Autistic individuals, especially at the lighter end of the spectrum, often appeared to be possessed of some sort of super intelligence and soulfulness – they had unusual ways of looking at the world, and eccentric and uncanny abilities and talents, that lifted them head and shoulders above the hoi polloi.  Many individuals labelled autistic, some posthumously based on records, have been game-changers throughout history — Mozart, Einstein, Gandhi, Isaac Newton, Hitchcock, Warren Buffet, Bill Gates, Yeats, Bobby Fischer, Carl Jung, Auden, Emily Dickinson, Jane Austen , Erik Satie, Franz Kafka, Nietzsche, George Bernard Shaw, Gustav Mahler, George Washington, Charles Schulz, Marilyn Monroe, Henry Thoreau, Mark Twain, Richard Strauss, Van Gogh, Virginia Woolf, Howard Hughes, Al Gore, Bob Dylan, James Taylor, Keith Olbermann, Robin Williams, Henry Ford, Paddy Considine, Abraham Lincoln, Alexander Graham Bell, Thomas Jefferson, Glenn Gould, Darwin, Michelangelo, Orwell, Bruckner, Bartok, Benjamin Franklin, Bertrand Russell, Dan Aykroyd, Beethoven, Thomas Edison, Jim Henson, Hans Christian Anderson, Lewis Carroll, Herman Melville, Michael Palin, Andy Warhol…the list goes on and on.  I’ve always sensed the wisdom in Aristotle’s phrase that “There can be no great genius without a combination of madness.” And, the more I read, I even started to recognize certain autistic traits in others I know, highly functioning adults in all sorts of professions and walks of life. Looking back on it, I have no doubt that at the high school I went to in New York (Stuyvesant) which was chock full of brainiacs, all of whom were unusual and odd, at least half of the students were likely on the autism spectrum. I’m somewhat of an oddball myself, and if someone advised me that I, too, was also somewhere on the spectrum, I wouldn’t be surprised, nor, knowing what I know now, would I be alarmed.  I would in fact be well chuffed to be in the company of such a uniquely endowed, perceptive and talented group.

My ex-wife and I sometimes play a game.  One of us mentions a category and then we say names and opine on autistic or not.  For instance – politics.  Reagan? No.  (Bill) Clinton? Yes, somewhat.  Nixon? Somewhat.  John F. Kennedy? Yes. Lyndon Baines Johnson? No.  Bush? No. Jimmy Carter? Probably.

There’s no question that Lumen was born into the right family, one which champions and celebrates creativity and individuality.  And Lumen most certainly hit the jackpot with his mother, Lisha, a woman who is above all, in equal part, a mother and an artist, and whose great passion in life is, in equal measure, being a mother and an artist.

As Lumen continues to head down the path of forging his own personality, his own destiny, we want him to be comfortable in his own skin and we will ensure that this always continues to be the case.  We’ll be going on this journey with him every step of the way and he can hold our hand, or venture forth, at any time he likes.  There’s no telling what will become of any one of us.  Hell, I don’t even know what I’m having for dinner tonight – that’s how far my ability to see into the future extends.  What I do know to a certitude, however, is that Lumen is a remarkable and extraordinary young boy, and I have no doubt that he will grow into a remarkable and extraordinary man, one who makes the world a better place.

Lumen’s name is Latin for light and that’s just what he is.  Like his older brother Enlai, who adores his little brother and is always looking out for him, Lumen is a delight and inspiration to us all. And we love him to bits.

 

 

When I stare at art, inhale it, listen to what it is trying to tell me — its yearnings; its desire to communicate a moment, a gesture, a history, a personal right or collective wrong, a colour which refuses to release it from captivity; its request to hold its hand for a time and then walk away, but to come back to it in the conscious or subconscious; its screams of everything erroneous and whispers of everything true; its need to punch me in the chest and kick me in my proverbial balls and occasionally apologise or guffaw; its insistence that I look at it with weary eyes that still seek; and its want, always its want — I feel alive. I feel fixed, as well as fixed to something so much greater than me – a beautiful monster that cradles me and makes me ask questions and release preconceived notions, makes me grateful for time and chances and senses, makes me empathetic to struggles and confinement and the human condition, makes me exult in the why and how and even the because, makes me ponder necessity. And contemplate filth and splendour and money and flesh.

My relationship with art is much deeper than appreciation. It is a reliance. While I don’t necessarily wish to pass this dependence on art to my sons Enlai and Lumen, I want them to be aware that art will not fail them. If humans disappoint them, if nature betrays them, if they are in need, there will always be art – there will be galleries, museums, books, graffiti, conversations, light, imagination. I have exposed both of them to art from a very young age. We have had some of our most profound minutes while viewing art together. The conversations I’ve had afterwards with my older son Enlai have lasted hours. Art created time for us.

And so we should create time for it.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My amazing Enlai, you are seven years old today.  Not long ago, you and I looked at several old photos of you.  We laughed at your funny antics, your silly faces, and I was reminded of how your pa has always said you like to “fill the unforgiving minute with sixty seconds’ worth of distance run”.  Somehow, my son, I believe you have learnt to fill your minute with at least seventy three seconds’ run.  Time seems to be sharing a secret with you.

This seems a momentous birthday because I was seven when my parents divorced.  I remember so many details from that period, details that may have seemed insignificant to others but were colossal to me.  And I have always been mindful of this when parenting you.  We are both sensitive souls, you and I, and it is important to me that this seventh year of your life is one which makes you feel warm, feel more love than you’ve ever felt.  I hope it is a year that you look back upon and preface any words of recollections with a smile.

Happy Birthday to you, my Enlai, whose mind is a rich repository of all things superheroes.  What you may not know is that you are my personal superhero and possess more power in that brain of yours than the powers of Doctor Strange, The Flash, and Martian Manhunter combined.

You, who questions absolutely everything, including why more people don’t say “Amn’t I” as opposed to “Aren’t I”, whether God exists, whether yellow is actually yellow, and whether 8pm is in fact a good time for a child to go to bed.

You, who every time has been given an opportunity to make a wish over the last year, whether when throwing a coin in a fountain or blowing on dandelions or birthday candles, has wished for your friend Vanessa to be well again and for your brother Lumen to lose all his allergies.

You, who I see being fragile when we are alone together.  When your eyes tell their stories.

You, whose teacher began your end-of-year report with “Enlai is a happy child” and conveyed that you are one who exemplifies empathy.

You, who says you don’t like to wear jeans because they feel too “crunchy”, eat a certain pizza because it’s too “creamish”, or doesn’t want to get involved in a situation because it feels too “crumbly”.

You, who laughs the most sincere and contagious laugh when you are playing practical jokes on people.  That fake poo joke we played on grandpa and grandma is one for the books.

You, who turns to paper and pen when you feel most passionate about something.  And whose writing and art show just how observant you are.

You, who favours walking next to your mates with your arm around them.

You, who have inherited the gift of the gab from your pa.  After I told you, “You don’t always have to talk.  Empty, quiet spaces are a good thing, and silence can be golden,” you responded, “No, silence is not golden, it’s more like metal or wood.”

You, who shares everything – your toys, your food, your opinions, your time.

You, who always asks the definitions of the words I use.  And remembers the definition and uses the word.

You, who has realised the power of your vivid imagination over the last year.  You have your dreamcatcher for any nightmares, an endless supply of paper for your ideas, and a mother you can rely on to hold you, to listen, to encourage.

You, whose sort-of-American-sort-of-British accent makes me laugh.

You, who are so patient with and so protective of your little brother.  He is so lucky to have you in his life.

You, who likes to assert your newly-found attitude by saying, “I don’t care.”  I know you do, and in your seventh year, I wish for you an understanding of why you always should.

You, who overheard a conversation when a man used the word stupid.  You proceeded to dictate said conversation to me, stating, “I won’t say the word because you’ll get upset with me.  I’ll spell it: S-T-O-O-P-I-D.”  I felt it necessary to correct you, and you thought I was pulling a quick one on you, replying, “Oh, I’m not falling for that one.  A man knows how to spell his bad words.”

You, who has a nurturing nature which I hope will always stay with you.

Despite the fact that it is your birthday, my love, I am the one who has received the gift.

 

You turn two today, my beautiful Lumen.  A couple of those 365-day spans have passed, and I am the most fortunate mother for having spent every single one of these days with you.

You, who only requires water to splash in, music to dance to, and open spaces to run in.

You, with your lengthy lashes, gentle eyes, nose that you’re proud to show me lately that you know how to pick, and that diastema smile and infectious laugh that accompanies it.  You, with your hair that is on its way to matching Dylan’s on the Blonde on Blonde album cover.  You, with your bear cub hands.

You, who jumps as if all the world were a trampoline, and runs as if receiving the silver medal was not an option.  You, who will attempt to climb walls, sofas, chairs, stairs, and over ledges, and when you succeed, almost always land on your feet.

You, who can’t stop giggling when you, your big brother Enlai and I wrestle and tickle in the bed.

You, whose favourite songs are Jay-Z’s “Dust Your Shoulder Off”, Aloe Blacc’s “I Need a Dollar”, the Alphabet Song, and Wheels on the Bus.  You, who likes to sing in your buggy as we walk the streets of London.

You, who is fascinated by Elmo, Peppa Pig, and Ben and Holly’s Little Kingdom.

You, who could swing on the swings for forever, plus or minus a few minutes.

You, who enjoys destructing every tower Enlai and I build for you and then running out of the room before we can catch you.

You, who has no flaps left in your flap books because you’ve enthusiastically torn them all out, and who doesn’t like to read books in their page order.

You, who are so independent already, and cheeky to boot.

You, who has been through so much in your short life with allergies and anaphylactic reactions but remains the epitome of resilience, the embodiment of the little fella that keeps on keeping on.

You, who comes to me for cuddles, and who I never want to let go when you do.

At only two, you seem to possess a bendable light, a light that shines around corners and softens rough edges.  Without being aware of it, you offer to those who are living in faint light to lather themselves in your beams.  And to those basking in borrowed light, you remind them of their own lustre.  You are my sweet, sweet Lumen.  Happy Birthday, my love.