Spectrum

Autism Spectrum Disorder. The National Institute of Mental Health defines it as

 : a developmental disorder that involves impairment in communication, social skills and repetitive behaviors and restricted interest
 : is known as a "spectrum" disorder because there is wide variation in the type and severity of symptoms people experience.  

          It is January 21, 2008. I carry Morgan in my arms into our home. Garret rushes to my side, confused. He has not seen me for 5 days.  He is 2 years and 10 months old. He could not understand why his Mama is carrying another baby in her arms and not him. He tries to pry away his baby brother from my arms. I tell him, "It's okay Garret. This is Morgan, your baby brother. We love Morgan the same as we love you." He looks at Morgan and then at me, and then he sits still by my side. I look at both of them. Morgan in my arms. Garret beside me. What beautiful boys I have. What a beautiful life  we have, I say in my heart.

        Three months after, Garret was diagnosed with Autism Spectrum Disorder. Three years after, Morgan was diagnosed to be on the spectrum as well.

        Coming to terms with Autism is never a one-time thing. Even until now, I go back and forth across, well,  the spectrum too. There are days I am on the high end of it being content, grateful and at peace with what my boys are living with. What we are living with. Grateful for the many good things that Autism has brought to our life-- Learning how to pay attention and be grateful at the littlest milestones, learning to be truly present and finding the capacity to love a little more deeply than I would have ever thought possible. 

      And then there are darker days where I find myself at the lower end of the such spectrum where I am angry.  At whom or what? At almost everybody and everything-- At the world, at the possible causes of autism, at the genetic vulnerability I may have passed on to my boys, angry at the possibility of how several theories of how certain medical procedures thought to protect our children from diseases are actually purposeful concoctions to cause what my boys are living with now. Angry at the fact that there is no way to know the truth of it all. Angry at the uncertainty. Angry at the things they will never get to experience.  Angry at the Universe culminating with the question, "What have my boys ever done to deserve this?" Of course, there are no answers.

          So what do I do in these darker days? I try to be with what is, saying, "Yes, this too." This anger at everything and everyone is included in my life.  It's okay. Every part of this coming to terms with Autism is included in my life. Come, Anger, sit with me. I can be with you. You are much a part of me as gratitude. As peace. As contentment. And then when my heart feels like it could explode into a million pieces, I weep.  I come face to face with my anger's real name-- Hurt and Grief. 

         In this time of necessary isolation, I am compelled to go further inward as a mother, to see what has come to pass, to be fully present in the highs and lows of motherhood's spectrum, the bright and dark places of this very human experience. To be grateful, to be at peace, to be content. Also to be angry, to be hurt, to grieve. More importantly, to take to heart how Autism has taught me to love more deeply than I would have ever thought possible. And it is because of this deeper capacity to love that anger, hurt and grief is ever-present as well. I realize now that everything has a place in my life. My heart has room enough for everything that I encounter because of this.  

         It is May 17, 2020. Garret is 15 now. Morgan is 12. Morgan is physically bigger and taller than Garret. Whenever I call Morgan out for disarranging the pillows on the bed, Garret rushes to fix them. Whenever it is time for Morgan to help out in the chores, he is quick to do it for his brother. He purposefully leaves pieces of bread on his plate so Morgan can have more bread. Whenever I raise my voice at Morgan for being naughty, Garret tells me, "Okay, okay." It is his way of pleading me not to get angry at his brother. Garret loves his younger brother more than himself, it would seem.  

     Coming to terms with Autism in our lives isn't a one-time thing. Life isn't at all a one-sided happening. There are joyful moments and desolate ones. Light and darkness. And many more shades and degrees in between.  The heart opens and closes for as long as it is alive. Spectrum, Merriam-Webster defines it as a continuum of color formed when a beam of white light is disperse. My boys have Autism Spectrum Disorder.  I am in it with them for as long as I am alive. Our everyday life with autism is as wide and varied as the band of colors formed by a beam of white light dispersed as seen in a rainbow.  This is how it is. This is how it shall always be. What a beautiful life it is. What a beautiful life it shall always be. 

The Universe's Gift

"There is a belief that the Universe is trying to manifest a certain message in bringing special children into this world."

The sun was high in the afternoon sky. The waves were cerulean and aquamarine with crests, foamy white. Surfers were aplenty in the line-up. Tourists both local and foreign crowded the tower. Their voices with the sound of the waves filled the space. And here I was standing with M, letting her words seep in, bringing me to silence. 

Many years ago, as the boys were diagnosed with Autism Spectrum Disorder one after the other, family and friends tried to comfort me, needless to say, all with good intention. The words of comfort came in 3 kinds, if one can call it that. One, they would say, “Sige lang, there is a reason for everything. Two, "God will not give you a load you are not able to carry". And three, "Having a child with special needs is "swerte" ". A source of good luck. I remember at the time thinking how those words were absolutely meaningless. I did not need these ‘explanations’. I knew on a cerebral level that they meant to help me come to terms with everything. But they always fell short of the enormity of how I felt. It did not make sense of the overwhelming future that lay ahead of us.  I needed somebody to take back the words of the doctors at that time. I needed somebody to tell me something that justified the life sentence, as I saw it back then, that was passed on us. I did not need good luck. I needed my boys not to be autistic, to be normal. I needed both of them to be safe in the world. I needed them to go to normal schools, have girlfriends, get a college degree, have careers and families of their own. I needed what was not handed to us. I needed anything except what was already there.

Over the years, I learned to cope with every struggle. I learned to deal with every heartache. I learned to wing “it”, whatever “it” required of me as a mother. I poured my heart into every word that came out of my fingers and onto the keyboard as I wrote my questions into stories of how Garret finally said the word, “Mama” at age 8, of how Morgan, while still nonverbal understood a universe of things. Suffice it to say that as I wrote, I wept. And as I wept, I was able to carry on one day at a time. With every tear, I came closer to holding space for this certain word that would determine how we all would live—acceptance.

A month ago, I immersed in a Yoga and Meditation Retreat in Siargao. I just came from a deeply emotional session with my teacher and I wanted to take a breather by seeing the ocean at The Boardwalk. M, my roommate just arrived from a day of wandering around the island as I was about to leave. Suffice it to say that after a brief exchange of how was your day, we were on her motorcycle on our way to The Boardwalk,  having an hour and a half worth of an exchange of words that quieted my heart.

"There is a belief that the Universe is trying to manifest a certain message in bringing special children into this world." 

This was what M said to me that warm afternoon. I realize now not only on a cerebral level but deep in my heart, that the words of comfort said to me many years ago was all intended to ease my pain and bring me to a place of acceptance. And if I were to be honest with myself, those words had the same meaning as what M said to me. But it was only at that very moment that this beautiful blue-eyed soul said those words that I truly felt comforted. It was only in those seconds that the words were uttered that the enormity of what we have been given finally made sense. It was on those wooden planks where M and I planted our feet on amid the crowd of tourists, in the high sun and the blue of the ocean that all those lessons taught to me by autism, by the Universe, by both my boys, finally manifested itself in the most beautiful form. I do not look at autism now as a life sentence any longer. At least not in a desolate way anymore. I still see it as a life sentence, but now one that can only be described as a gift. The gift of pure and utter light in a world of shadows. I know this now. Motherhood is never about what I need. Motherhood was and always will be what my boys, Garret and Morgan need-- that I fully embrace the light of their nature in every tear wept, in every anger expressed, in every joy emanated from their bodies, in every milestone worked for, in the simplest acts of love and understanding that need no words. They need me to be present for all these, to hold space for the pureness of their hearts, to accept the gift of what is here. And at the end of every single waking hour, to be deeply grateful for the gift of who they are. 

"The Universe is trying to manifest a certain meaning in bringing special children into this world."

It was the first time I heard this wisdom phrased this way. Or perhaps because I was finally ready to hear it and I was ready to learn some more, that it resonated in my heart. I was ready to receive the Universe's gift. And so it brought peace in my soul. 

Thank you, M for that wonderful afternoon. I miss you dearly.

Safe Haven

Dearest Garret and Morgan,

I sat in meditation last night recounting the many things in my life I am grateful for. As always I start with thanking the Universe for both of you. In particular, I chose to bring to mind the moments in the afternoon hours where we lay in bed and there is nothing to do but bask in each other's affection. Where our curtains are drawn dimming the harshness of sunlight and the air-conditioner is steadily humming a hymn of calm.   In these moments, the world slows down, time is eternal, and  nothing else matters as each of you take turns in holding my face planting kisses all over it. Your hands are open, relaxed and free at this time.  It is unlike the times we are out in the world in the noise and chaos of everyday life. The world is too overwhelming for you and you have to cover your  ears with your hands to find your calm. Oh Garret, here in our afternoons together, when you hold my face, I know what real tenderness is. My Morgan, when you intertwine your fingers with mine, I know what certainty means. The three of us squished in our bed is comfort and rest defined. In the one or two hours that we lay like this, I see  contentment and joy in the crinkle of your eyes as you smile. I feel your peace in the stillness of your bodies. There is no other place to be or to go. There is no other thing to do or be. There is only us three, being who we are, in each other's arms. I am grateful for these moments and my heart is full knowing there is a  time and place in this world, in this blessed life of ours where you my boys can feel most safe. In this space we have, I, all the more,  am most free, most content, most safe as well. In these moments I know and truly feel I am manifesting my heart. 

      

As I went deeper in the silence,  I asked myself what my purpose is in life. I waited for the answer to come to me and it did. In the ways I allow myself to be with you my boys-- fully, wholly, freely, I realized I have already found my purpose. I asked myself next, "How shall I further expand and deepen my purpose?"  The answer flowed effortlessly: By creating a safe haven for people where tenderness is a way of life, where being simply present with our bodies, minds and hearts is enough, where stillness and silence liberates us into contentment and peace, and where we are given the freedom to be who we are meant to be. 

Once again, you my boys, have showed me the way. I remember now the moment I decided to learn how to surf. At the time, I had innumerable doubts, fears and reasons why I shouldn't. And then as I was looking down from the Boardwalk, boys your age rode the waves bravely, happily and freely. I could not stop my tears as I watched them.   I cried because right then and there in the glare of the morning sun amidst the flurry of mothers and grandparents taking photos of their  children and grandchildren surfing, a profound truth emerged. It was as if you were both right there with me saying it to me,  "We want you to be brave, Mama. We want you to be happy. We want you to be free." 

Oh my boys, now as I tread on the path of expanding and deepening my purpose, doubts hover. Fears arise and questions arrive. But the answer is as clear as ever,  as clear as that sunlit morning in the island I now call my safe haven, as sure as the waves of the Pacific come and go. I hear you telling me again in a language that only we understand-- you, my Garret holding my face in the most tender way, you, my Morgan intertwining my fingers with yours that grounds me to this truth--  "Mama, we want you to be brave and happy. Mama we want you to be free." 

I know now why the Universe gave both of you to me. Both of you. Kamo'ng duha gyud. For no other reason than to manifest my heart.  I love you my boys. Every single day without fail, I am grateful not only for you but to you. 

With all my love,

Mama Bea