The Golden Hat

A few days ago I posted the video of the story of Carly, an amazing teenage girl with non-verbal autism.  It must have looked a bit out-of-the-blue on the Singlestream!  But I have a story to share.

There is no expertise behind me.  I have no understanding beyond what you yourself have access to on the internet and in the book stores.  What I write on the subject is not based on any interaction I have had with an autistic person.  It is simply a tug that has taken hold of my heart, a human story that stirs me, and a dialogue I feel led to become a part of.

I once sat through a presentation by a pediatrician.  He was very passionately entreating the audience, and those representing health insurance companies in particular, to learn about autism, to seek out the facts and get to understand the illness, and to find a way to help the parents of autistic children to care for their children.  It was acknowledged that care for autism is not covered by many health insurance companies even now and even where it is covered the parent is faced with disqualifying features.  For example, speech therapy is limited to speech lost in some health insurance plans, occupational therapy may be covered up to six visits a year, and care for anything to do with autism falls into the mental health category which may or may not be covered by others at all.  He encouraged a deeper look at what we as a community could do for those with autism – there isn’t enough money to pick up where insurance leaves off, there is not a lot of focus on autism by charity works and public education because it isn’t a life threatening disease in the same was as say cystic fibrosis, and there is very little understanding around the full spectrum of autism.

It stayed with me, this lecture.  It has been at least two years, and I still see the man’s passion, the frustration with some of the questions (oh my goodness I myself got frustrated when one woman said she didn’t believe autism exists and that parents just need to learn to love and discipline their children!).  I remember being struck by the invitation he made to consider a different life – what if I were me, completely and precisely me inside, and yet was completely unable to communicate to my family?  What if I were unable to hold my bowels or point to where it hurts when I’m injured?  What if I was fully aware of all of this, stunningly intelligent (as I sometimes think I already am) and held back by a body that would not obey my commands?  Then he invited us to understand the parents.  What if you have no way of reaching your child, have no resources to pay for full-time care, and receive no assistance from the government, the health insurance company, the medical providers and other social institutions?  Marriages have ended and livelihoods lost to care for autistic children.  But this is your child.  And you love them completely. You will do whatever it takes for them.  But do you?

And then a few weeks back I stumbled upon the Golden Hat, a black and white picture book created by Kate Winslet and Margaret D. Ericsdottir, mother of Keli, a non-verbal autistic boy.

Kate and Margaret tell the story of how the Golden Hat came about by publishing Keli’s poetry, words that cling to you.  His most haunting is the poem about the Golden Hat.  You read the story of their determination and the mission of the Golden Hat Foundation that sprung up around this poem in the emails between the two women.  Margaret writes of her son, of his first words, of her challenges and her love.  And Kate does as I did in that lecture, puts herself in Margaret’s shoes and finds herself not very different but for the grace of God.

The story then follows the travels of the Golden Hat from one famous person to another with a letter.  Kate described her purpose to each recipient saying:

“To produce a book of photographs of well-known people all wearing the same hat.  My favorite beaten-up trilby, to be precise.  They would all be self-portraits taken on my basic digital camera, which I will send along with the hat.  It will be passed (very carefully) around the world and worn (I hope) by many.  I’ll get it to you, and collect it when you’re done.”

The photos were to be accompanied by quotes of each person considering the following scenario:

“It’s hard to imagine being deprived of the means to communicate.  Imagine a wall between you and those you love, imagine being trapped inside yourself, never able to express your desires, needs, feelings.  Then imagine the loss to those around you.  Those who love you but assume that you can’t hear them, don’t understand them, can’t relate to them… what would your words be?”

The Hat also travelled from one non-verbal autistic person to another.  Their photographs are published with their first words.

I was so touched by Dov Shestack’s first words at 9 years old when he was first given a letter board.  When asked “What have you been doing all these years” he replied “Listening.”  Josh Andrus first said “Try to fully understand my condition, because I get so lonely.”  Keli, the little poet, first said at age 10 “I am real.”

These pages, populated by beautiful people, made me weep.

I entreat my readers, do what you can where you can to learn, know more, love and contribute to the lives of those among us who need that much more and have that much less available to them.  But for the grace of God it could be me or you.

Please visit the Golden Hat Foundation by clicking on the link below and have a look at the beauty of this story and perhaps find your place on the Golden Wall.

Project Grow

Project Grow bracelets for Plant Day, on adults and kids alike.

As our islands get washed clean and flooded for a time with pure rainwater, there are little children looking out rain-splattered windows and dreaming about Project Grow.  They wished and prayed for rain and here it is, in all its glory.

This is a project I believe in, one I encourage my team members to take part in, and one that has been proudly introduced to Cayman.  It is a farm-to-plate lesson in agriculture and nutrition that our children, more accustomed to video games and air-conditioned indoor activities, have tucked into with gusto.

Schools apply to participate in the project.  If they qualify, a Grow Box is set up in their school in preparation for Plant Day.  Plant Day is when the kids and sponsors meet at the box early in the morning and plant seeds and seedlings – carrots, corn, eggplant, tomatoes, peppers, blue berries (if you can eat it we will probably plant it).  There is a curriculum to follow, a farmer’s market, and recipes for kids to cook the foods they have lovingly grown.

I have vowed to not mix business with pleasure on this blog but there are some days I absolutely adore my job.  Most days I just love it, but Plant Days are all Adore Days.  I’m looking forward very much to what comes next.


The First Filipina

The first thing I remember is that she was very small.   I was 6 and she wasn’t much bigger than I was.  The biggest boy in our class was bigger than she was.  But she was very strong.  Her hair was a round puff of black framing her petite face, always alive with feeling.  It was a face that gave colour to stories and flavour to the year in the lives of those small children.  And all 30 of us fell into line very quickly when she walked that first day around with her yard stick clicking in time with her heels ready to hit a number on the blackboard and demand an answer times 12.

She was the first person to pick dates off the massive palm that fell in the gales that year.  We kids clambered over the side of the tree like the oppressed elves over a giant tyrant now felled to our will.  She put the first date into my mouth and my eyes widened at finding so gorgeous a food on our very own playground!

The magic of a world we didn't know opened up for us by a feisty little lady with a crown of black hair...

That Commonwealth Day the country we represented was Brunei.  The country was so far away that we had no idea it existed before she read to us and had us create little crafts and posters about the little island nation much closer to her island than to ours.  Brunei had gained her independence only a few years before we sang and presented in unison before the whole school all that it represented to the Commonwealth in our little primary school uniforms.

I remember her sense of humour.  There are jokes I am now remembering and only now getting.  I would take her stories and warnings home to mummy and wonder why she was choking back a laugh.  Like the story she told of earthworms.  We had had tropical storm weather and it had rained on the playground making it a muddy mess.  All the kids in other classes were digging and mucking about in the mud – the rain wasn’t keeping them off our turf.  But no, the queen of our classroom headed us off that morning before we were let out to play with the story of how earthworms lay their eggs in the dry dirt and when the feet of small children walk in the mud the eggs stick and get sucked into the pores of the skin and travel up and up and up the blood stream and into the heart and into the brain and they worms crack out of their shells to take over the vital organs and kill naughty little children as they play in the mud.

I have never walked barefoot in mud since. 

Embedded in the group of us from an early age was the image of the Philippines as the island home of a small and mighty race.  The image stayed deep within me as my person formed and every one of her countrymen who presented themselves to me in life were met with expectation and respect.  Prejudices were never allowed to form even with social unrest and stereotypes of strange diets and disingenuous subservience, mercenary anti-integration and a culture of remittances said to drain our economy.  In the end they were her people, and she was my people.

There is a lesson in this for us all.  Be kind to small children.  They will see you as all that you are and all that you are and those like you will be seen by them with the kindness you yourself spent on them into their adulthood.

Man’s Best Friend – Orphan’s Competition

Even in Honduras dogs flock to me.  They are not the coddled and spoiled pooches I have left at home but skinny black mongrels Beethoven and Pantera.  They are loved but not like children, more like instruments of defense.

Beethoven is ill.  He is very skinny and has a leg that he won’t let touch the ground.  Nena believes someone hit him in one of his wonderings outside of the yard.  At first he was terrified of me, scurrying off the patio when I came outside.  And Pantera, protective of her ailing brother, barked and howled at me once.

Until I shared my semita with them.  Now I have two friends that sit as I write in the corner of the patio.  Pantera just walked over to kiss my feet before ambling to her place at the foot of the armchair her brother is curled up on.

They are well fed and treated – better than some of La Ceiba’s children.  It is one of the great ironies of life that I grapple with.  My dogs sleep in their own beds and can count on me to give them two walks a day. fresh water to drink, food to eat or ignore, and treats when they obey.  They fall asleep next to me, under my head, on my belly, and manipulate me with mischief into bribing them with sausage to behave.

And more than 300 million of the world’s children are without food, without water, without love, without protection and have no shelter.

This is why I get impatient with yuppy environmentalists who protest against dolphin parks and other forms of animal captivity.  Do they not realize that in the wild many of these animals will die brutal deaths on the food chain?  Do they not realize that in captivity they have a life of protection and provision that would be the envy of a large percentage of the world’s children?

A little monkey shall lead me…

One moment on my night of Flor de Caña haunts me today.  A little boy, shivering with cold in a clinging wet shirt four times his size came up to the window on the other side of the baleada stand when we stopped at La Línea.  As the lady prepared our baleadas on one side, his face appeared like a ghost, muddy and full of need.  I dug through everything – pockets, purse, brassiere – secret stash for safety sake – trick learned in Jamaica from my daddy who uses the far less fresh hiding place of his socks.   I found change enough to give him, yet not enough to make him the target of bigger urchins, and added it to the collection Boris was taking.  It was handed to the silent little ghost through the window, cracked just enough for it to pass but not enough to let the rain in.

Beethoven has just stood up on his three legs and is barking an answer to some very chatty birdsong in the guava tree.  One leg out of commission, he is still the boss of this yard and dedicated to his job.

So much of me is being wasted.  The thought turns over and over in my mind.  I wait for the time when my children will be born and my family begun, but perhaps it is not God’s will.  There is a call deep in me to take a child home, to clothe him, feed him, hug him in the mornings and teach him to love each day.  There is a burning desire to rescue a little ghost from begging at La Línea and to give him a future of possibility and potential.

When I was 17 years old my school did a mission trip to St. Elizabeth, Jamaica.  The home of my grandmother.  We worked in the library of a Catholic school and spent the evenings at an orphanage playing with the children.  Children in the home of my roots, abandoned and in need.  There was a little boy six months old and very sick.  He had been found on the doorstep waiting for the nuns and covered in his own soil and was taken in to be nursed back to health and loved by childless women.  There was also a little girl.  I will never forget her name.  She was six years old and full of energy.  She took a liking to me, climbing me and asking me all sorts of questions about my hair, about my home, about family, about what flying on a plane is like.

I learned on that trip that I love children and that they love me.  And I decided that day that one day, with or without a husband, I will give an orphan a home.

Mucho Gusto Conocerle La Ceiba – Friday arrival

I am in Honduras, the land of my grandparents’ youth, the womb in which they were cradled.  This is my first trip, long overdue, and is certain to be the first of many.

We almost didn’t make it.  Last night thunder rocked Cayman and the camera flashes of lightning took in the whole island like a trembling and emaciated model.  Children climbed into their parents’ beds and dogs howled at the intrusion.  But still I rose early, packed with faith and dressed as well as I could expect to before facing such a great unknown.

Monkey was a joy.  She wasn’t quite awake yet as we made it to the airport and searched out a gift for her “Nena”.  She cried when her Daddy said goodbye and called for him well into our flight, but soon she was deep in the adventure.

There are things we take for granted as adults that came to mind on this flight.  The knowledge that when you swallow your ears will pop as altitude changes is one thing.  The faith in the protection of the structure of the airplane from the fall to your death in sudden splattered contact with the ocean or the ground below is another.  Ply as we might at Monkey with the bottle, and then with water, and then with gummy treats, she simply refused and continued to fuss with her ears.  In the end it was Myce’s soda – a forbidden adult drink – that brought her some relief.  You could see her surprise burst into a big shining smile that slanted her eyes shut and sent her cheeks rosy as one ear popped into adjustment.  She took another swallow and waited and the next ear popped another smile out on to her face. And then it was “Where is Daddy?  Daddy gone?” again.

But then her mummy, Myce, held her near the window and showed her the ground disappearing below.  She screamed with sudden terror and fought and clawed back away from the window seat for fear of falling.  She was strapped in, attached to Myce’s belt, but she twisted her way to a seat next to her.  I didn’t expect that reaction at all!  But of course it makes sense!  How on earth could a child as smart as she expect that little flimsy glass to stay secure and keep her from falling?  What would she know of the physics that has gone into its design and the FAA and international standards?  Her fear was absolutely reasonable.  And soon it calmed.

The iPhone and Angry Birds held her attention for a few minutes and then it was Peter, James and John in the sailboat out on the rolling sea complete with actions.  She must have felt us leave Cayman airspace because talk of Daddy switched completely to talk of Nena as if they had made a midair handover.  “Nena cahming, Nena cahming” was chanted for all of the half-full plane to hear.

All of a sudden the clouds broke.  “Nena cahming!  Nena cahming!”  The child would chant with a clear understanding.  She hadn’t seen her Nena in months.  More soda and protest and descent and out the window the proud coast stretched out of sight in both directions.   Waves like a white collar around a proud neck rolled in homage to an immovable shore.  A strong unrelenting line of coast standing guard for the land that promised to be lush and full of adventure struck me like the beating of a drum.  I have flown to many a coast but never seen one so imposing and powerful as this coast of Honduras.

Trees taller than my island has ever known flanked the edges of pineapple fields.  Dole has been here for some time and the United Fruit Company has played a major part in the shaping of this land’s modern history.  From the air the order of field and crop gave way to wild and lush jungle.  Pico Bonito disappeared wide into the clouds, dark and brooding like a mother-in-law that refuses to be pleased, conceited and in charge.

And then we were in La Ceiba.  The shanties built against the fence spoke to the new arrivals loud and clear – you are entering a land with a story much older, deeper, more proud and more troubled than your own.  Life here has not always been easy but it has always been and always will be if it is the will of God.  Watch your step as you leave the comfort of your plane, a modern trapping, and enter a world that has the power to swallow you whole and never spit you out.

The airport was surprisingly small for a city larger than life in the stories of my childhood.  It also surprised me how quickly we arrived and cleared the lines – there was a mere hour between boarding in George Town and stepping out of the airport into La Ceiba.  It was much faster than the flight to Jamaica, the birthplace of my other grandparents.

The land on the face of it is similar to that more familiar womb but more extreme in her beauty and more lush with food.  I never dreamed it possible but it is so.  But there is more poverty here and less reliable infrastructure.  There is more struggle and less strife.  The sense of the people is very different.  Hondurans seem much more at ease with themselves than Jamaicans do in their homeland.  There is less to prove, more determination to enjoy.  The music is more love song than it is fight – mas amor que guerra.

My family is from the islands and they are said to be quite different to the mainland.  But already I feel part of this place.

Nena picked us up with a neighbour in his pickup truck and she met Monkey with kisses and joyful greetings of “Que gorda!  Mira la!  Ha crecido MUCHO mucho!”  Monkey glowed into her Nena’s arms and was met with kisses.  She was squeezed between Nena and Myce as mother embraced daughter and then turned to me with welcome kisses.  Flush with joy and full of Honduran zest, Nena laughed a generous and confident laugh at Monkey’s wiggling.  “Que bonquito tiene!”

(I love it!  I love the bonquito – the Caymanian word “bonkey” + the spanish diminutive “ito” = el bonquito.  Word stolen.)

The truck pulled out on to a two lane road well paved and lightly trafficked.  We rode behind a yellow bus with “Jesus is my friend” on the back and I couldn’t help but chuckle.  Already I felt at home. We crossed over a wide river named the Rio Danto and I took in the smell of water untouched by salt.  The same cold front that we left behind in Cayman was here now over La Ceiba and there had been rain.  As we drove carefully through, Ceiba trees dripped water in a picture reminiscent of the rainforest they once formed here.  Turning into the suburb toward Nena’s home, the ride changed to twists and turns through narrow lanes of river rock, craters and boulders.

I met Myce’s family once we passed the “puentecito Nena” as it is called.  Her brother and two younger cousins were waiting to smother Monkey with love.  She was a little overwhelmed but like a true socialite adjusted quickly, the Spanish in her Spanglish standing out even more.  She basked in the open and unashamed love of her family and it struck me that there is no wonder such a child can be such a pleasure – she is showered with love.

The family home is perched over a stream and has many levels.  Several hours into being here I am sat now on the porch looking through columns that support the roof above and out over the garden a level below.  Hills surround us and Nena’s homemade wine warms me as well as the nap I have not long awakened from.  The air is cool and the carne asada con tortillas, chimol and frijoles have filled me.

Today I am at peace and at home.  In Honduras.