When a Month Just Isn’t Enough

February 11, 2015 //
1

Mitzvah PicturesFebruary is Jewish Disabilities Awareness Month. A few years back, when I was writing, “Puzzled: Raising a Child With Autism & Other Pieces of Family Life” I shared these reflections. In addition to being on my blog, I was invited to share them once again with Jewish Family & Career Services. I just rediscovered it on their blog, and believe it to still be a timely & meaningful message. I hope that you will think so too. Because the values of inclusion, awareness & acceptance should be lived out every day in our synagogues.

Rabbi Eliezer says: Let other people’s dignity be as precious to you as your own. (Pirkei Avot 2:15)

rabbi

Faith has always been an integral part of our family life. From the time our children were very young, we shared with them the traditions and beliefs that were a part of their Jewish heritage. As we read books about letters & numbers, shapes & colors, we also read stories about God. And just as we sang the familiar songs of childhood, so too did we end each day with the Shema. Even their names connect them to their Judaism. They were not given an English and a Hebrew name, but only a Hebrew name. Faith has never been a separate piece of our lives, reserved for synagogue or holidays. It is woven throughout the tapestry of our days, a piece that is inherently and intimately bound to all other pieces.

When Yael was diagnosed with autism, faith carried us through those early days of fear and angst. It continued to accompany us into a place of acceptance, strength and hope. Yael has always loved being Jewish. She embraces her faith with incredible ease. I am often mystified by that. Autism means that she sees the world through such a literal lens, yet faith and God are anything but that. She loves to study Torah with her father, and when she sings at synagogue she does so with such feeling and an obvious sense of connection to the prayers and their meaning.

When Yael was a very little girl, she stood in front of the mirror one day. It was an ordinary occurrence, the mirror seemed to be one of her favorite places to play. Her reflection made for a wonderful & entertaining playmate. At the time, though she had a fair amount of words, she tended to use more babble when she spoke. But, on this day, as she stood playing with her reflection she spoke her first complete sentence. Three words that have stayed with me until this day, “I see God.” My husband says that there is a Jewish teaching, that very young children are able to see angels – messengers of God. I believe that on that day, that is what Yael saw as she looked in the mirror. B’tzelem Elohim, she is created in the image of God and the divine spark lives within her.

Every day for Yael and for our family, we live with “Jewish Disability Awareness.” Neither faith, nor autism, touch our lives for only one month of the year. It is a daily theme as we navigate life on the autism spectrum, as it is for so many families. It is with great pride that Yael will talk of her Judaism and her autism, and both have surely played a role in shaping the incredible young lady that she is today. They are intrinsically bound with Yael’s sense of self and each inhabits a piece of her soul.

Judaism and the awareness of those who live with disabilities and challenges, should not exist as separate entities. It is not enough to bring them together for one month out of the year. I have heard from so many parents over the years about how isolated they feel. Those who most want to embrace their faith, who are often in the most need of spiritual comfort, often find those gateways inaccessible. And even when they are able to find a way inside, they often stand on the periphery, never truly feeling that they are a part of their Jewish community. They stand ready to make a quick exit the moment their child’s disability becomes “disruptive” to others and often, over time, they simply stop trying to return. In Pirkei Avot 2:5, we are taught “Do not separate yourself from the community.” But to feel that you don’t fit within your faith, that there is no room for you or your child, creates a profound sense of loneliness and loss. And, I believe that our Jewish community becomes weaker every time another family is asked to simply accept that loss.

I recognize and respect the value in teaching about acceptance and diversity during Jewish Disability Awareness Month. I am grateful that the seeds of awareness and understanding are being planted in Jewish communities around the country. But it is not enough. To truly nurture the souls of those living with disabilities, we must begin to embody the Jewish values of inclusion each and every day. We must model it for our children and make it an inherent part of Jewish education. We must challenge ourselves to create a safe place for people with disabilities and their families, to worship and participate in our Jewish communal life. We must treat those living with disabilities not simply as guests who are welcomed once in a while, but as important members of our community, with something of value to contribute.

Yael’s understanding of her faith continues to grow, as does her understanding of her autism. Both will continue to play a role in her life each and every day. Autism will surely bring with it new challenges and obstacles, and her Jewish faith will just as surely help her find the strength and courage to persevere. Life on the spectrum will not be easy to navigate. Life with a disability never is. But faith can be a compass on that journey. And we owe it to all of those living with disabilities and challenges, to give them access to that compass. So that when they want to find their way to their spiritual home, their Jewish community will be waiting to embrace them with open arms. For, as it says in Isaiah 56:5: “My house shall be a house of prayer for all people.”

Mitzvah Pictures

Ben Azzai taught: Do not disdain any person; do not underrate the importance of anything – for there is no person who does not have his hour and there is no thing without its place in the sun. (Pirkei Avot 4:3)

Categories Faith, The Autism Journey

An Open Letter to Senator Rand Paul

February 8, 2015 //
0

The following is the content of an email that I sent to the office of Senator Rand Paul on February 4, 2015. It was in response to the following statement that he made in an interview with CNN:

Senator Paul “also asserts that he’s heard of cases where vaccines have caused ‘profound mental disorders. I’ve heard of many tragic cases of walking, talking, normal children who wound up with profound mental disorders after vaccines,'” Paul said.

Dear Senator Paul,
Lest you continue to say otherwise on this national platform which you’ve been given, my daughter is “normal.” Yes, she has autism. That, however, does not make her “abnormal.” And just to clarify, autism is not a “mental disorder”, rather it is a complex “neurodevelopmental” disorder. You see, facts and language matter here. They matter not only when they perpetuate falsehoods about autism and vaccines, but they matter in how my daughter sees herself.

How shall I answer her when she asks why a possible presidential candidate gets to go on national TV and distort the truth? When he demeans her value as a human being, reducing her to a “side effect” of a choice her parents made in order to protect her health and well being? Yes, you see, that is the implied message in this whole bizarre dialogue. We did this to her! Have you any idea how many distorted and perverted ways in which we, and even more significantly, I as the mother, have been blamed for our child’s autism? Enough!

Wouldn’t it be refreshing if conversations about autism could focus on the many ways we as a society need to work towards creating better educational, support, job, housing and independent living opportunities for people with autism? What if you used your air time to change the conversation? I know if I had your platform that is exactly what I would do.

Vaccines save lives. The MMR vaccination does not cause autism. How many children will have to get seriously ill or die from preventable illness while politicians like you wave the fear mongering flag in regard to autism? How many autistic ears heard your words? How many autistic eyes saw you on the news? How many autistic hearts broke at your distortions? How many autistic souls felt even more diminished at your mischaracterization?

To be clear, you and I are on opposite ends of the political spectrum. I’m not one of your constituents. Regardless of what you say or do, you were never going to get my vote. But I am a mother, consistently battling stereotypes about autism and working hard to empower my daughter to do the same. So it is on her behalf that I speak out. She deserves better in this national political discourse. I will not allow you to shame and blame without responding.

My beautiful girl was born with brown eyes, a full head of hair and chubby little thighs. She was born with a compassionate heart, a strong spirit, a quiet sense of courage and yes, autism. It’s part of her. It’s not always been easy, in fact it has been downright painful and hard along the way. But I’ve learned from her, I’ve marveled at her, I’ve been astounded by her…. She is not an abnormal other…. She is a differently-abled 16 year old young woman. And you know what? I would vaccinate her again in a heartbeat.

Sincerely,
Deborah Greene

Categories The Autism Journey, Uncategorized

Shabbat Reflections on a Song Leader ~ Once

February 7, 2015 //
1

DSCN0664

There is nothing in the world so much like prayer as music is. (William P. Merrill)

Once, we didn’t know if she would ever utter a complete & coherent sentence.
Once, we couldn’t bring her into a room full of people & stimuli-knowing it would overwhelm her senses.
Once we didn’t know if she would be able to make & sustain friendships.
Once we didn’t know if she would ever reach or achieve the milestone of becoming a Bat Mitzvah.
Once we were afraid to hope too much, ask for too much, pray for too much.
Once it seemed there wasn’t room for her in our faith. She would exist on the periphary, never being able to believe it truly belonged to her.
Once we didn’t know that we could teach her to cut with a scissor, let alone make beautiful music on an instrument.
Once, the simple act of drinking from a straw seemed too much to ask of her lips, her mouth. The only songs we might hear were those she mimicked, memorized from her favorite TV shows. Rote melodies and words….
Once, we heard the word autism and for a brief moment, our world came to a stand still.
But, we loved her too much to remain in a place of helplessness. We owed her so much more than that.
So once, we fought for her. And she fought alongside of us. We immersed her in therapies, and she displayed a fortitude & a perseverance that, in the company of that support, brought her forward, tiny step by tiny step.
Once, the world overwhelmed her. A clown, a bright gathering of balloons, the sounds of a crowded space. But we did not retreat. She allowed us to slowly expand her world, safely, with trust… inch by inch.
Once, she carved out an entry way into her faith, embracing it as her own, determined that she would have a place, amongst her peers.
Once, we began letting go, allowing her to try, to stumble, to feel her way through, so she would know autism did not own her, it simply inhabited her.
Once…. once we didn’t see her standing on the bimah, guitar in hand, surrounded by her peers, leading a congregation in prayer & song.
Once we didn’t see that smile, full of pride… her smile, our smiles.
Once, our hearts broke–sometimes they still do.
Autism has changed her journey. Not simply once, but forever.
Once we didn’t know where that journey would take her. Today, we still don’t.
So we take in the moments… always.
And last night, as we watched a very special song leader, our hearts filled with pride. We kvelled and turned to each other, my husband and I.
“Remember when we never thought this would be possible?”
Once the word never occupied a space too painful to bear. We tucked it away, choosing instead to focus on maybe, perhaps, one day…
And on this Sabbath eve, we quietly revisited the word never.
Never underestimate her.
Never give up on her.
Never forget the quiet courage she displays each & every day.
Never be too afraid to hope, to dream.
Never stop giving her the tools, the chances, the opportunities.
And never forget the moments, when we get to witness the incredible blessing of watching her do, what once we thought could never be done.
In prayer, and in song… and in watching her, her love of music, her love of faith, her love of Jewish community, she shared with us a gift. It’s her gift.
And that we will never give up on.

Yael 3
Never give up, for that is just the place and time, that the tide will turn. (Harriet Beecher Stowe)

Categories A Slice of Life, Nourishing hope, Nourishing our Children, The Autism Journey

Child’s Pose

February 5, 2015 //
1

YogaPoses-Childs

Courage is the power to let go of the familiar. (Raymond Lindquist)

Confession, I am not the most confident person in the world. There, I said it. I often find myself battling a sense of inhibition & self-doubt when I embark on something new. Like many, stepping outside of my comfort zone is never easy. But, at 46 years old, I am learning to be more cognizant of those feelings. I am learning that when those voices, the ones that stick little pin pricks into my confidence level, begin to speak, I need not let them have the final word. I listen to them, and then I force myself to begin to answer them. What am I afraid of? What is the worst that could happen? Is it possible I will miss out on something fun, exciting, rewarding or meaningful because I didn’t want to look silly, or perhaps fail? Do I feel like all eyes will be on me if I mess up, falter or struggle? The answers and the questions vary at times. But the important part, is challenging myself not to succumb to the doubts or inhibitions. I promised myself in this new year, I would do more of that.

And so today brought me to yoga class. I’ve taken yoga before. It was at a local studio and while I absolutely enjoyed doing it, I will confess to always feeling a little bit uneasy. I didn’t like being the new student in the class. I felt silly & even a little embarrassed when I struggled with a position that seemed to come so easily to those who had been practicing for years. I felt unsure about my movements & rather than feeling relaxed, I found myself caught up in trying to get the moves “right.” Am I positioned properly? Is the right leg up in the air? Why can’t I seem to contort my body in the ways that others can? And so, after a few months, I just fell away from the practice.

When meditation became a part of my personal journey, I began to think about returning to the practice of yoga, but off went those little voices in my head, coming up with a myriad of excuses and reasons not to try. So I ran on the treadmill, I took the doggies for walks, I lifted weights and I periodically thought to myself, boy I’d really like to try yoga again. Then…. I didn’t.

But today, I gave those voices in my head a gentle time out. I attended a yoga class, at our local Whole Foods, instructed by my friend & yoga instructor Pam. I told her that I was planning on coming, wrote it on my calendar so my family would hold me to it, and even asked my friend to give me a gentle reminder the day before. This way, I left myself little room for backing out.

So I showed up today and immediately felt welcome and safe within the walls of the community room, transformed into a yoga studio. My fears about looking foolish, or doing it wrong, quietly subsided and I threw myself into the practice.

Here is what I learned today. I learned, as I looked around the room, that other people shook or stumbled as they stretched to achieve a pose. I learned that even if you loose your footing, or feel off balance, you can re-position yourself and once again find your center, even if it takes you several tries. I learned that stepping outside of my comfort zone, both literally & figuratively, can be hard, it may even hurt as I awaken new muscles, or use them in a new way. But with continued stretching & practice, the body will adapt, it will strengthen and it will move you to places you once thought impossible.

It’s a metaphor for life really. Isn’t it? It is only in the stretching, the reaching, the stepping far outside of what we know & feel comfortable with, that we grow. Sometimes our legs may shake, perhaps our arms feel unable to reach any higher, or any further. But if we keep up with the practice we will soon feel more certain of our footing, we will find our balance, we will learn that we are capable of reaching great heights and we will find our center.

As children, we are free of so many inhibitions. It’s a beautiful thing to watch & behold. Some of us are blessed never to lose that. And some, like me, are trying to find their way back to that place. Today, I felt a little bit closer.

Yoga is called a “practice.” It is a process of learning, growing, strengthening and flexibility. It involves setting an intention, whether it be for the studio time, the day ahead or perhaps even for the longer term. And so, next week, I’ll be back at Whole Foods, learning, stretching & even fumbling my way through once again. And as I move into child’s pose, I’ll be reminded that answering the voices of self-doubt and being open to new experiences, is a gift we must continue to give ourselves, well into adulthood. Namaste.

Categories A Slice of Life, Nourishing Self
Newer Entries »