Letters between a non-speaking autistic and apraxic boy and his neurotypical therapist

Alfonso
Alfonso

“I am a 10 year old boy trapped in a body that does not follow my instructions.  I am a boy with the same dreams and aspirations as any other boy.  I am not defective or flawed, I am ever evolving.  I am not an ordinary boy, I am autistic and apraxic and I am a fellow human…I am not a project to be completed, I  am a whole person.  My story is simple,  I am not a perfect human, I am an eternal soul.  I am light and I am luminosity, I am ethereal,” Alfonso

By Jenny Palmiotto

In our digital age, letter writing has unfortunately become a lost art. The formality of putting your words onto paper allows a depth of thought often lacking in the oversimplification of emoji and acronyms. It is a way to preserve how we are feeling and viewing the world in this very moment. With letter writing, there’s a sort of vulnerability that conversational language doesn’t allow for.

This summer, Alfonso and I set out to write to one another. This came about when I felt so moved by one of his recent blog posts, I was compelled to write a letter to him to share my experience. His initial words were like an arrow straight to my heart and I needed to let him know his power. I wasn’t sure that I would be able to share how impactful his writing was unless I wrote it down. I know Alfonso…If I were to speak my thoughts of him, his humility would have not even allowed me to get through the first sentence. So we started exchanging letters.

We decided to make our first set of letters public to break down misconceptions for those living with autism. Alfonso is non-speaking, but he has a lot to say. The world needs to listen and learn from this young man’s wise and whole-hearted way of living. Too often, persons with autism that have communication challenges are presumed to be lesser or impaired. Too often those that communicate with a letter board rather than words are misunderstood and doubted. Everyone deserves to be heard and understood. Alfonso is part of changing the world’s view of those with autism. Here are his powerful words:

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Autism And Other Endeavors of The Heart

By Alfonso

I am a valuable member of society and have many things to offer.

I am a 10 year old boy trapped in a body that does not follow my instructions.  I am a boy with the same dreams and aspirations as any other boy.  I am not defective or flawed, I am ever evolving.  I am not an ordinary boy, I am autistic and apraxic and I am a fellow human.  I always try to do my best and always try to comply.  I am not a project to be completed, I  am a whole person.  My story is simple,  I am not a perfect human, I am an eternal soul.  I am light and I am luminosity, I am ethereal.

I am a manifestation of God’s greatness and a part of the universe. I am a living testament of the amazing miracle of the all mighty powerful place where all things converge to create life. I am not an accident, I am a decision of the divine. All is as it should be. Am I eternally forever destined to live this way? I am unsure of it. All I know is that today I am a person with nonverbal autism and severe apraxia.

***

Dear Alfonso,

Your words are living art.

Just as beautiful and transcendent as any painting or sculpture, I gulp up my tears at the things you say.  Not because I feel bad for you, but because I feel blessed that somehow I was chosen to know you.

Your words are living art.

Your words resonate with my soul, make me question a larger purpose; center me with my faith in humanity. How can so many people have gotten it wrong about you? How can an educator have thought you were dumb, retarded, impaired, not there?  How could professionals think your differences were resistant, non-compliant, complacent or simply not worth their effort? And the world, how can we judge you for how you speak and consider your words lesser because they aren’t voiced within the larynx; they are spelled with a letter board? How could you go unseen, unnoticed or worse yet…thought of as a person with “behaviors” that must be forced into compliance? How could those same eyes see the same human being that I do? I will never now, because for me…

Your words are living art.

I have questions too…but they are not about your intelligence, your humanity, or, God forbid, your “behaviors.” My questions for you are about what you think, how you feel, what you know to be the truths of life. My questions are really about how I can be part of setting you on your right path so that you can continuously discover who you are meant to be and what you are meant to do. My role is to be your partner in taking down barriers so that your can continue with your larger messages of creating a culture of love and respect. Keep sharing your words. Keep defying the odds. Keep rising above each message of doubt.

Your words are living art.

With both your apraxia and autism, you have shared with me that at points you feel trapped within a body that doesn’t do as it is told. Supposedly, I’m better at perspective taking because of my neurotypcial status, but I’ve spent many moments unable to imagine what this must be like for you. I can create metaphors that on occasion make myself believe that I can get closer to what your experience of this world may be.  But I know at this point, no metaphor serves as a good enough example. I can reflect and question my neurological privilege and wonder what it must be like to be you. Again, I’m not sure my richest imagination can capture your experience. You are living in a world where most will choose not to understand you. Where you might continue to go unnoticed. Where people will condemn the way your body moves all because differences are scary for others. And yet, you choose something different for yourself. You choose to notice others. You choose to take all that hurt and harness it into love for humanity. You continue to grow your understanding of our imperfect world. You choose to be you when others tell you that you aren’t good enough. You choose to teach tolerance, create acceptance in every moment you spend in our public space. You choose this not because its fun or it garners you heroic attention. You choose this because you are aware that in each positive interaction with you, people’s stereotypes are obliterated. With all of your 80 pounds, you choose to be the bigger person.

Your words are living art.

I marvel in the wisdom that flows through you, the wisdom that has refused to be trapped by any amount of obstacle. I often wonder about how all that power could be condensed into your 4 foot 2, 10-year-old self. I often wonder if I have the courage to live by your words and create a world where love is abundant and respect is given to all. I wonder if I’ll ever give you as much as you have given me.  I often wonder if I can be more like you.

Your words are living art.

Warmly,

Jenny Palmiotto

***

Dear Jenny,

I am so embarrassed. I hardly deserve that praise.  I am not perfect, and my mother pays the price of my imperfection.   She has a gentle soul and loves me unconditionally. As I walk through life and discover more about myself I am more and more grateful to have her.  I know my journey is not a common one, and I feel grateful to have her as my companion.

I am never sure how it is that life puts people in my path, but I always seem to find people like you, Jenny, who can see beyond my disability and all the way to my soul.  I am not sure if angels put you in my path but I am ever astounded by your ability to understand me and my experience on this earth.

The world we live in is full of people who can never know what it is like to be me. People who talk and shout at will, who move in space with grace and dignity, people who can love the “right” way because their hugs are not too tight, not too long, not to the wrong person.  Their fingers don’t need to squeeze arms or elbows.  They simply move their body and voila! Movement happens.

I am not retarded, slow or absent; I am a person who is ever present and aware. I am a person trying to tell the world that people with nonverbal autism matter in ways we generally don’t give them credit. We have so much to give and teach and so much to share.

I am a guardian of the earth and a messenger of the stars. I am a movement warrior trying to win the war to conquer my own body. I am a portal to a different world where nothing is impossible in the hands of God.  I am a person filled with unheard ideas and feelings. I am a loving human being who wants to learn a different way of expressing how I feel.  I am understanding and patient and I lose myself in my emotions sometimes.

I wonder why people keep questioning my intelligence instead of asking me about myself, and I am saddened by people’s doubts. I am so much more than an IQ; I am a human being capable of love and empathy.  I do not lack social skills; I am keenly aware of my environment and want desperately to be taken into consideration.  I am not a shell devoid of humanity, I am humanity and I am a servant of God.

I am unsure of what the future holds for me; that is an unknown path that I cannot plan for. Today, from you, I need understanding of my differences and guidance as I learn to appreciate the strength in my character and the gentleness in my heart.  You have already guided my steps successfully and I am grateful for your words of encouragement and guidance.  You get me in a way that few people do; only my mother and maternal grandmother understand me that way.  A life of silence makes you analyze many things.  I am constantly thinking about life, about God and about a life with a voice that comes from my larynx.  Your words and support make my journey an easier one.

I am not sure what to say in response to your generous praise. My words are not art but only try to convey the thoughts I come across on an ordinary day. I am trying to make sense of this life and all its beauty.  For me this life is art and we are all merely brushes in God’s hands.

Warmly,

Alfonso

***

Alfonso is a ten year old autistic author who lives in Chula Vista with his parents and his dog Padme.  He is preverbal and communicates through spelling on a letter board or typing.  I have fought all my life to be included and have struggled trying to make people believe in my competence and ability.  I am a successful student and arduous worker.  follow me at http:// autismandotherendeavorsoftheheart.beellc.com

A recent blog post by Alfonso:

I practice a lot. Every day I try to go a little faster. I like flapping my hands because it makes me feel like a bird and it makes me feel free, almost as free as a bird.

Jenny Palmiotto

Jenny Palmiotto, Psy D., LMFT (#47573), is the Clinical Director and owner of The Family Guidance & Therapy Center of Southern California. She is also the creator and host of Love & Autism: A Conference at Heart, which is occurring on October 8 and 9th, 2016 in San Diego, CA (www.loveandautism.com).  She is president and founder of the non-profit One Day Tomorrow. She is a certified RDI consultant. Jenny believes that love is the primary goal in life and that this doesn’t change with neurological differences associated with autism. Her clinical practice focuses on improving quality of life through meaningful and authentic interactions. Jenny is an outspoken advocate for change within the autism community. She challenges the dominant discourse about autism. Every person needs to feel valued and live a worthwhile life. Jenny is passionate about walking besides her client’s as they live fulfilling and productive lives. Visit www.familyguidanceandtherapy.com to learn more about her organization.  To speak to Jenny, you may call 619-600-0683.

3 Comments

  • Lael Belove says:

    I don’t have autism. I don’t have anyone in my family with autism. I don’t work with the autistic community (although I had the honor an privilege to co-host the screening of “Normal People Scare Me Too, co-directed by Keri Bowers and her son Taylor Cross (himself autistic) Yet I keep reading all these posts about living with autism. Why have I not deleted by subscription to these blog when I subscribe and unsubscribe to others? I’ll tell you why. It is because posts like this one by Alfonso and Jenny, touch me so deeply. For when I read a post like this one, the world around me disappears and I enter a place of almost (ok I’m going to go over the top now} a kind of reverence and awe. My heart expands. Like Jenny said, the purpose of life is LOVE and these posts fill me with hope and with love for all of us.

    • Debra Muzikar says:

      Wow beautiful words Lael Belove. I’m going to share them if you don’t mind! True Jenny and Alfonso’s blog is a testament to the human spirit and the power of love and grace.

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