Archives for category: The Autism Journey

Dearest Yael,

It is hard to find the words to express all that we are feeling today. Proud doesn’t seem quite enough, nor does grateful, although surely we are both of those things.

The journey you have been on these past 18 years hasn’t always been easy. And yet somehow, in a world that often overwhelmed you and placed numerous obstacles in your path, you dug down deep and found a fortitude and resilience that kept you moving forward. And as much as we would like to take credit for our part in getting you to where you are today, the truth is, it was that strength of spirit, that tenacity, that grit and that courage that played the greatest role in all that you have achieved.

Today marks the end of one chapter, but also the start of a new one. The pages are blank, the plot yours to create. We have no doubt you will fill it with the warmest of characters, the most beautiful of songs, stories of meaning, messages of hope and that each word will be imbued with love and faith. And even when the pages have moments of hardship, which is sure to happen, we know you will dig down deep and tap into those very same reserves that have helped you before and in the end, you will persevere and emerge even stronger for the challenges.

We believe in you. We always have. We believe in your heart and your dreams. We believe in your hopes and desires. We believe in your abilities, your potential and all of the promise that resides within. And no matter how old you get, we will always be your greatest cheerleaders and most devoted fans. We will always be here for whatever you need, even as we let go and give you the space to begin carving out a life on your own. Know that your safety net remains strong, ready and ever-present if ever you need it.

Perhaps the words proud and grateful aren’t quite enough to encompass the emotions of the day. But we will use them anyway. We are so very proud not only of your achievements, but of the fine human being that you have become. Your soul is pure, beautiful, generous and kind. It illuminates so much goodness into a world often tinged by darkness. What a gift that is sweet Yael. And we are grateful. We are grateful that God blessed us with the opportunity to raise you, to accompany and love you on this journey. We are proud to be your parents Yael Greene.

May you go forward from strength to strength. May you gain a deeper sense of self and purpose. May you continue to bring joy to all of those blessed to know you. May you never lose your enthusiasm for life, music and your Jewish faith. May you hold fast to your dreams.

The Midrash, in Kohelet Rabba, teaches us that

A person has three names:

one that she is called by her father and mother;

one that people know her by,

and one that she acquires for herself.

From this day forward, you will imbue your name with an even deeper meaning. You will continue to ascend with grace and mercy.  And you will show the world that the very best of who you are is yet to be.

Mazal tov Yael Channah Greene

We love you always.

Mom & Dad

yael graduation

Our beautiful girl. Diagnosed with autism at age 3. How far she has come and how very proud we are.

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A reflection on this World Autism Acceptance Day–yes, you read it right. It is not Autism Awareness that we seek for our children, our friends, our loved ones living life on the autism spectrum. To be aware of someone’s existence, their gifts, their talents, their struggles, their needs, their strengths, their words or lack thereof is not enough. I am aware of many things–but to be aware does not mean that I act. It means that I see, that I know someone, some thing, some issue is in my presence–it’s passive–no, this autism mommy seeks acceptance–that which comes from actively trying to understand, engage & include. We have journeyed along this spectrum for 13 years now, knowingly at least, because of course the journey began long before we had a name or a diagnosis for what we were seeing. And in 13 years I’ve learned a lot-about autism, about advocacy, about tenacity, about courage and about the young woman who is my daughter. 13 years in and I know autism is fluid, some challenges lessen, others become less obvious, still others remain strong–but to be accepting of who my daughter is, I must be open to understanding her–fully, wholly & completely. I must continue to know how autism lives within her, so I can teach her to advocate for herself, find her way in this world, learn, grow and have every opportunity she deserves–but it isn’t enough–No, for that to happen you, her peers, her classmates, teachers, community members and those who will one day enter her life–need to know her for who she is, come to understand how autism impacts her, work to find ways to encourage & support her success, be a part of carving out a meaningful place for her in this society that centers around the “typical.” If you are simply “aware” of her, you are not engaged, committed, invested in all that she has been through, all that she is and all that she can one day become.
I want more than blue lights–I want more than awareness–I want to be a part of creating a society that can celebrate neurodiversity, that understands that an inability to speak, does not mean there are not words to share, that doesn’t think that the ultimate compliment I could receive as a parent is, “Wow, I’d never know she has autism.” Or, “Are you sure she has autism? She doesn’t seem autistic.” I’m not looking for her to “pass off” as anything other than who she is–and autism doesn’t look, act or think in any one specific way–no, it didn’t come in a one size fits all package–but you see, if we move beyond awareness to the true act of acceptance–we’d come to know that–and then, we can do so much more.

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)

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

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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)