Contentment

I know not how I may seem to others, but to myself I am but a small child wandering upon the vast shores of knowledge, every now and then finding a small bright pebble to content myself with. (Plato)

I am not one who often finds peaceful contentment. This is not because I want for more than I have (though, being human, there are moments when I do feel that way). And it’s not because I pass my days coveting that which my neighbor has. No, the real reason that I don’t often experience this emotion is because by nature I am a bit of a worrywort (my husband might take issue with the “bit” part of that statement), I am a planner and my mind seems to run in a constant state of motion. In many ways, these attributes are things which have served me well as the parent of a special needs child. There is that saying, “A worried mother does more research than the FBI.” It’s true. I think my need to plan & anticipate, a need often driven by my worries, is what propels & enables me to be such a fierce advocate for my daughter.

But, to be sure, there is a downside as well. Because sometimes I am so busy advocating, worrying, planning and anticipating, that I don’t allow myself to simply be in the moment. That’s not to say that I haven’t relished & savored many special moments in my daughter’s journey… I have. But, I’m not sure I allow those moments of contentment to pull up a chair and stay with me awhile. It doesn’t take too long before my mind starts moving again and the wheels are in full motion.

So, here I am up at URJ Camp Coleman with my family.  I have the privilege of watching all of my girls in the midst of this ruach (spirit) filled camp setting. Up until now, I’ve gotten all of the positive reports about Yael. She’s in the mix, the girls are inclusive, she’s making friends etc. I’ve seen her smiling face as I’ve stalked Bunk 1 looking for pictures of Yael, Leora & Noa each day. All of that brought me comfort to be sure. But still, there is something different about seeing it for myself. With my own eyes, I can see the joy in Yael’s face. I can watch her interactions with her bunkmates and see the laughter, the playfulness, the camaraderie. I can see this with all of my girls. They are happy, bursting with camp spirit and thriving in this home away from home. Knowing that, seeing that, witnessing that with my own eyes, fills my heart with contentment. I truly feel at peace. The worries are at rest & there is nothing to plan.

This feeling, in this moment, is a gift. And, rather than simply unwrapping that gift, enjoying it for a while & then letting the wheels set in motion once again, I’m going to relish it. I’m inviting contentment to pull up a chair and stay with me for a good, long while.  Together, we’ll sit back and take it all in. And I’m hoping that along the way, contentment & I will learn to become better friends.

Camp, Family & Home

Having a place to go – is a home.  Having someone to love – is a family.  Having both – is a blessing.  ~ Donna Hedges

Before Yael left for her second summer at URJ Camp Coleman, we were out running a few errands. There were, after all, a million little things to buy and pack before she and her sisters headed off to camp.  Yael had been thinking about what she wanted to share with her bunkmates in regard to her autism. It’s a conversation she has had before. She takes it upon herself to educate those around her, to help them better understand her autism & how it impacts her. She speaks with eloquence and grace as she allows her peers to experience the world through her eyes.  And just as Yael embraces & accepts herself, she helps others to do the same with her honesty, her insight & her willingness to be so open.

So, as we drove, she asked me if I thought we should practice the conversation she was preparing to have at camp. I thought for a moment & then asked Yael what she felt that she needed. If she needed to go through that conversation with me, I’d be happy to.  If she felt confident in her words, her thoughts & her perspective, then perhaps we didn’t need to review. She paused for a moment, reflecting, and then decided that she was confident enough to handle the conversation without any further input or coaching from me or her dad. I love that. I admire that. The truth is, she’ll need that life skill as she moves forward. She’ll need to educate others & advocate on her own behalf.  She went on to say that last summer’s conversation was so positive and meant so much to her. “I told the girls all about my autism & you know what Mommy? They really understood & accepted me. They treated me like…. well, like family! I always felt included and isn’t that what family is all about, mom?” And through a stream of tears, I simply nodded and answered, “Yes, Yael. That is what family is all about.”

When we dropped Yael off yesterday, it was not without fear or hesitation. I own my identity as a bit of a worrywort when it comes to my special needs child. Frankly, I worry for all of my girls. They are my heart & my soul. It is hard to entrust them to the care of others, particularly when it comes to Yael. We had once again shared our concerns with Bobby Harris, the director of Camp Coleman, and his wife Ellen Zucrow. Ellen plays a key leadership role as an Inclusion Specialist, helping to support those kids who come to Camp Coleman with special needs.  Ellen had spoken to both myself and my husband as we attempted to get all of our ducks in a row for camp. As we arrived at camp and made our way through the various support staff, it was clear that they had created a strong & secure safety net for our girl. Each conversation that we had, from Ellen to the unit head & on down to the counselors, helped to ease my fears & angst. Though I would not be there to watch out for Yael, it was clear that there would be an abundant amount of loving eyes on her, ready to support her in any way that she needed. Each conversation reflected the camp’s devotion to creating a safe, nurturing, inclusive & supportive atmosphere for Yael.

Yael has described family as those who love, accept & include you for who you are. She’s right. Leora, my middle daughter has often described camp as “a home away from home.” So, as I sit here and think about all that Camp Coleman’s staff has done for Yael, and all that they have done for all three of my girls, I can’t help but think of them as family. They don’t simply have my daughter’s back, but they have mine too. And, when I reflect upon the communal spirit that they nurture at Camp Coleman, and the values that they embody, I know that while all three of my precious girls are not with me right now… they are home. Home is a place where you feel safe, loved, cared for and valued. Home is a place where you can be yourself and be celebrated for all that you are. Home is where you find your family, both the one you were born into, and the one that you create. I am so very, very grateful that Camp Coleman has given my children a second home & an extended family. That is a gift & blessing beyond measure.

All The Rest is Commentary

That which is hateful to you, do not do unto another: This is the whole Torah, the rest is commentary. Go now and learn it. (Hillel)

As I stood in Shabbat services with my daughters this morning, this line in Pirkei Avot (Ethics of the Fathers) stood out to me. I have read it many times over the course of my life, but today, for some reason, it stayed with me, resonating on a deeper and more profound level than it had before. Sometimes it is as if God knows just what it is that your soul needs in a moment of prayer & if you listen to that still, small voice within, you’ll find your way there.

There have been many beautiful blog posts and videos made of late asking people to stop using the word retard. The efforts are being spearheaded by r-word.org and their campaign “Spread The Word To End The Word.” I have personally signed the pledge and shared the site and mission with others. I believe that words have power. They can be used to build, to strengthen, to support, to learn, to educate and to share. They can also be used to belittle, dehumanize, weaken, destroy, promote ignorance and marginalize those already living on the periphery. The “R” word does the latter. That is the truth, plain and simple.

But not everybody gets it. “It’s just a word,” they say. “I don’t mean anything by it.” “What’s the big deal?” And so along with the many profound and eloquent pieces that have been shared through blogs, on Facebook, Twitter and more, I’d like to offer this simple truth. These are words that resonate with me as the mother of a child with autism, as a person of faith and as a human being.  It is the Jewish version of that Golden Rule found in every faith.  That which is hateful to you, do not do unto another.  This is the whole Torah, the rest is commentary.  Now go and learn it.

Speak of others as you would like them to speak of you. Treat others as you would like them to treat you. Choose the words you would have others choose when they speak of you, your loved ones, your friends or your family. Our words matter.

This should be part of our moral compass. We teach it to children from a very young age. In my own preschool, where we lay the foundation of Jewish learning, we talk about using words of chesed (kindness), kavod (respect) and ahava (love). We teach these as an extension of the values that come with being part of a kehillat chesed (a caring community).  I have no doubt that similar messages & values are taught in faith-based preschools everywhere, each cloaked in the fabric of that particular faith and its teachings. Our youngest children seem to understand & embrace these ideals. Where then does it get lost?

That which is hateful to you, do not do unto another.  This is the whole Torah, the rest is commentary.  Go now and learn it.

Sometimes it is the simplest of truths that can be hardest to learn. But as we encounter the commentary of our lives and of our faith, these are the truths that define who we are. They reveal our neshama, our soul, not only to God, but to our fellow human beings.

May the words of my mouth and the meditations of my heart be acceptable to You, Adonai (God) my Rock and my Redeemer. Amen.

When a Month Just Isn’t Enough

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

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.”

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)

Feathers in the Wind

Wise men speak because they have something to say; Fools because they have to say something. (Plato)

I went to see my doctor yesterday. As I sat in the waiting room for what seemed like (and, it turns out, actually was) an eternity, I began to talk to the woman who was sitting next to me. She had come with her 10 month old daughter for one of their regular visits with the same specialist that I see.  Her daughter had been born with a large hemangioma on her arm. A hemangioma — “once known as a strawberry hemangioma — is a birthmark that appears as a bright red patch or a nodule of extra blood vessels in the skin.” (Source: The Mayo Clinic)

As we began to talk further this lovely young mother said, “You can’t begin to imagine the stupid & insensitive things people say when they notice her arm.”  I looked at her sweet baby girl, crawling around the waiting room floor, smiling and laughing. Of course I could imagine some of the thoughtless words that had been shared with this mother. I had heard many of those words myself. I began to tell her about Yael. I told her about going out when Yael was a young child, and contending with tantrums in the middle of the store. There I would stand, a flustered mother, completely uncertain of what had set my daughter off and unable to find a way to calm her. I told her about the rocking, the stimming, the flicking of the fingers, all of which had drawn the attention of others. Some simply stared, while others took it upon themselves to offer me their unsolicited advice or critiques. I used to say that their intentions were probably good, even if they had failed miserably in their delivery. I am no longer willing to give nosy, judgemental strangers that much credit.

As I sat with this mother in the waiting room (still waiting of course), she thanked me for sharing my story. “It’s good to know we’re not alone, even if our kids are getting judged for different reasons,” she said. She told me that she had never known or met somebody with autism, but when she does (and statistically speaking, she surely will) she will be much more sensitive and aware of her own words and actions.  Finally, the nurse came out and called mother & baby back to the exam room. I wished her well, and we said goodbye. 

Words have power, perhaps more than we truly know. And even the words of a total stranger have the power to hurt us. There is a famous 19th century Jewish folktale that tells of a man who had been going around town speaking ill of the rabbi. One morning, realizing how wrong he had been, he went to the rabbi seeking forgiveness. The rabbi told the man that he would grant him forgiveness after the man performed a simple act. “Take a feather pillow from your home and cut it open. Then scatter the feathers in the wind.” The man did as he was told and then returned to the rabbi. “Am I now forgiven?” he asked. “First,” the rabbi answered, “You must go back and retrieve all of the feathers and put them back into the pillow.” “But that is impossible,” the man answered, “The wind has already carried them away.” “Precisely,” the rabbi answered. “Our words once spoken, can never truly be taken back.”

Sitting in that waiting room at Emory University, two mothers shared their stories. The words, building a bridge between total strangers. Words can do that. It is how we choose to use them that can make all the difference.  When a mother is at her most vulnerable, when a child is struggling or when a difference in appearance, demeanor or behavior leaves someone feeling on the outside, words matter.  They can build or tear down, they can hurt or they can heal. Words can offer compassion or condemnation, kindness or criticism.  I only wish that all of those not so well intentioned strangers out there could see how much their words truly hurt. They often leave a lasting impact, that extends far beyond the moment that they are spoken. Perhaps if knew that, they would think twice about the feathers they scatter upon the wind.

 

Holding On & Letting Go

Two great things you can give your children: one is roots, the other is wings. (Hodding Carter)

 

 

It is said that, “All the art of living lies in a fine mingling of letting go and holding on.” (Havelock Ellis) It is, to be sure, a balancing act for every parent. We wish to give our children the opportunities to grow, to become more independent and forge out their own path in this world. Yet, we want to protect them, keep them safe and shield them from harm, hurt & the inevitable disappointments that life will bring them. Sometimes we perform this balancing act with great clarity & success and at other times we, as parents, fall short. We put our own fears, anxieties & baggage, in front of our child’s hopes, aspirations & desires. When you are raising a child with special needs, it seems as if they are even more vulnerable, in greater need of those protective wings being placed around them. They come into this world already with the odds stacked against them and it feels as if they are destined to face more than their fair share of stumbles, setbacks, obstacles, hurt & disappointments. So it would make sense that in that balancing act between holding on & letting go… we might choose to tip the scales in favor of holding on, being protective &  creating a more insular world for our special needs children.

 

One of my favorite movies is “Finding Nemo.” Nemo’s dad, Marlin, is determined to keep Nemo safe, to protect him from all possible harm and to ensure that nothing bad ever happens to him.  Because of his own life experiences, Marlin lives in a world of fear, angst & anxiety and he projects all of this out onto his son. But when life hands both Nemo & Marlin, an unexpected challenge, Nemo must learn to make his own way and to believe in himself. That isn’t easy, because throughout his young life, Nemo was never allowed to fail & falter and to learn from those experiences and move forward. He has never been allowed to try new things and risk disappointment or setbacks. His father, in all of the attempts to keep Nemo safe, robbed him of one of the greatest gifts a parent can give their child… a resilient spirit. The knowledge that when life knocks them down, or throws them off course, they can get through it, they can learn from it and they can emerge stronger & more ready to face the next challenge that lies ahead.  And while Marlin has robbed Nemo of  this important gift, he too has taken something from himself… the gift of faith. That is, after all, what it takes to let our children step out into this world… faith. We need to have faith in them, in their ability to handle and navigate the hard times. We need to have faith that they will make good choices and that they are the capable, thoughtful, intelligent & compassionate human beings that we have raised them to be. We need to have faith in those who surround them… their family, their friends, their teachers, their clergy, their counselors and all of those who will help to guide and shape them along the way. Faith & resilience, that is the balancing act. In the end, Nemo & Marlin both learn these important lessons. There is a final scene in the movie that has stayed with me always, and though I know it sounds corny to say, it has become a bit of a life philosophy for me when it comes  to myself and my children. Nemo is about to swim off to school and a wiser & more faithful Marlin says to him, “Go have an adventure.” It is an especially poignant moment, from the father who was once too scared to allow his son to go anywhere for fear of what could happen to him. “Go have an adventure”  he says to his son.

 

 

And so today,  I dropped Yael off for her first ever adventure at sleep away camp. Her sister Leora went for the first time last summer, and camp quickly became her home away from home. She even wrote an essay about it for school, citing camp as one of her favorite places in the world & she had been counting down the days until her return this summer.  Yael has wanted to go for some time, but it was only now that her dad and I felt that she was truly ready. The initial plan had been to send her with her own aide, someone who would shadow her throughout the day and night. But, as we watched our daughter grow, blossom and mature in this past year, we began to question whether she truly needed this level of support, or whether this was more about easing our anxieties & our fears. We decided to ask Yael what she wanted, knowing full well that to ask that question meant that we would have to honor her wishes even if it went against every protective instinct that we had.  Her choice… she wanted to go to camp “like all the other kids” and did not want an aide. She felt ready to take this big step and to try doing it on her own and we had to have faith that this would be the right decision.

 

Now, while “doing it on her own” meant that she would not have her own full-time aide, it did not mean that we would do any less to help prepare the counselors & staff that would be with her at camp. No, we felt strongly that in order to help her meet with the greatest level of success as she stood on her own two feet, we must lay a strong and secure foundation for her.  We are blessed that her camp, URJ Camp Coleman in Cleveland , Georgia, was committed to doing all that they could to create an inclusive & supportive atmosphere for Yael. We met with the Director of Camp, Bobby Harris, and his wife Ellen Zucrow, a social worker who helps to oversee those campers who come to Coleman with special needs.  We shared Yael’s strengths, as well as her struggles. We shared our hopes for her, as well as our greatest fears. We held nothing back, knowing that the more open we were about our daughter & her autism, the better able the camp would be  to meet her needs.  We empowered them with the knowledge & understanding that they needed in order to best educate their counselors & staff about Yael. And as we met today with her counselors, her unit head, the social worker, her programming head and the many, many people with whom we are entrusting her for the next 4 weeks, it was clear that they had taken that responsibility to heart.  I truly felt as if they “got it” and more importantly, in this Jewish camp,  it was clear that they understood what an incredible leap of faith Yael’s father and I were taking, and they met that faith with kavod (respect), chesed (kindness) & binah (understanding).

 

So, we unpacked her bags, settled her in and prepared for our goodbyes. And as I hugged my daughter tight, holding on with all of my might, I told her how proud I was of her for taking this very big and very brave step in growing up. And she answered me by saying, “I’m proud of you too Mommy. I’m proud of you for letting me go.”   ”All the art of living lies in a fine mingling of letting go and holding on.”

 

 

 

 

 

When One Door Closes

When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us. (Helen Keller)

 

Summer vacation is coming to an end. I can recall, just one year ago, sharing my daughter’s eager anticipation of the new school year. I remember going to bed the night before school began & sleeping soundly through the night. It was the first time that had happened since my daughter began elementary school. Usually, I was a nervous wreck, always worrying about how she would do, would her teachers be able to meet her needs, would she make friends, find success, learn & grow socially, emotionally & academically. In other words, the mommy probably had more butterflies in her tummy, than the daughter did. But not last year. I felt totally secure in the knowledge that we had found the perfect program for Yael. I reflected back on her 4th grade year and I was filled with optimism for the 5th grade year ahead. She was in the absolute right place, the perfect program and not only was she showing tremendous growth in all areas, but we had the added bonus of watching her blossom in a Jewish school. That was how I felt last year. It is not how I feel this year.

If you follow this blog, than you know that the leadership of the Jewish Day School took a hatchet to Yael’s program last year. As I shared in, “When Faith & Inclusion Collide” they put an end to all academic inclusion for the special needs children in Yael’s program, no matter their abilities.  So as I look ahead to the start of school in 2 weeks, I see my daughter in a self-contained setting and my heart aches. Had this been an educational choice made by my husband and me, along with Yael’s teachers, I would have been at peace with it. If we had decided that this was what was best for Yael, as she transitions into Middle School, I would be content with that choice. But we weren’t given that chance or that choice and though months have passed since the school made their decision, I am not at peace.

I have been forced to lie to my daughter. In trying to prepare her for the changes in her program, I have had to create reasons, where no good reasons exist. I have told her that she will be spending most of her day in the self-contained classroom, so that we can ease her transition into Middle School. I have lied. I told her that we want to ensure that she doesn’t get overwhelmed, or stressed out, so we felt it best that she not be in any of the mainstream classes this year. I have lied. My lies serve to protect her from the horrible truth and to spare her from experiencing the feelings of blatant discrimination. But that doesn’t make it any easier.

They say that “time heals all wounds.” I don’t know if I believe this to be true. My wounds are still fresh and the raw emotions still consume me. I was offered a respite during our summer vacation. I didn’t have to pull into the parking lot or walk through the halls of the school and experience the very visceral response that it brought out. I didn’t have to see the faces of those responsible for this decision or those who watched it happen without doing anything. I spent the summer playing with my children, vacationing with my family and focusing on the blessings in my life.  I needed that time away from the whole mess of our school situation. My soul needed nourishment and this summer with my family gave me just that. I also needed time away from the whole school mess, to try to gain a perspective that wasn’t rooted in the heat of the moment. Both my husband and I needed time to process our feelings to ensure that any decisions we made regarding Yael’s education or that of her sisters, were made with great care & contemplation rather than with impulsive anger.

As I write this, here is what I know. I thought that what my daughters didn’t know, would not hurt them. They had no knowledge of the events that had transpired. Yael did not know that she was being marginalized & discriminated against because of her autism. She was unaware that, though she received grades in the 80′s & 90′s, she would no longer be granted her place in the mainstream, even if she had earned it. She believed the lies that we told her, both the spoken ones & the lies of omission. And why wouldn’t she? Her sisters had no idea that the school that they so loved & adored, had acted with so little regard towards Yael. They didn’t know that their sister was being treated as a second class citizen, or that the special needs classmates that they called “friends” were also being relegated to the back of the bus. And they certainly didn’t know that we had been told by the head of school, that they too were “acceptable losses.” Lies of omission protected them from that ugly truth.

But now I am standing at a crossroads. I did not want to uproot my children. They are happy. They love their school, their friends & their community. And while we knew that it was not likely that Yael would be able to continue on in her program for the long-term, we thought that perhaps our other daughters could. We thought we could just push down our feelings about the school & its leadership and allow them to stay put. We thought that what they didn’t know, wouldn’t hurt them and that it would be punitive to remove them based on principle. But it turns out, that is not so easy to do. There is a line in the movie, “The Way We Were” where Barbra Streisand’s character says that “People are their principles.” I think that this is true and though our principles may change over the course of time & experience, they serve as a sort of moral compass as we navigate through this world. It turns out, they are not very easy to push aside or bury even when you know that to do so, would be to make life much easier for yourself or your children.

I can’t continue to send my daughters to a school that places so little value on them. I can’t continue to send  them to a faith-based school, that does not embody the very principles of that faith. A Jewish communal institution should be a Kehillat Chesed, a caring community. This Jewish day school did not act with care or regard towards my children, rather they were summarily dismissed. A Jewish school that teaches Tikkun Olam, repairing the world, should not act in a manner which further fractures it, by moving children backward & supporting segregation. A Jewish school that teaches the ideal of mitzvot, the religious obligation to do God’s work, should not disregard the abilities & gifts of God’s children, based solely on their “disability.” It turns out, I can’t push down my own principles, in order to keep my children at this school for the long term, because that is not the lesson that I want to teach my girls. I want them to know that principles, especially those based in faith, can’t simply be words on a paper or ideas with no action behind them. I don’t want to have to lie to my children, in order to send them to school. My girls have a profound sense of right & wrong and a deep commitment to making the world a better place. They recognize injustice when they see it, and my role is not to offer them blinders.

So, this will be their last year at this school. My husband and I will devote ourselves to the task of finding the right school for them. This door will close and somewhere another one will open. We don’t know where we will find it, but we will. We know that stepping through a new door will not be easy for our girls and they will gaze longingly upon the one that will be closing. But we will love & support them through it and I believe that their resilient spirit will serve to do the same. As for my husband and I, while it is clear that in the short-term we lost a very significant battle, our fight is not over. Our Jewish faith demands of us, Tzedek tzedek tirdof ~ “Justice, justice shall you pursue.” (Deuteronomy 16.20). We will continue to speak out on our daughter’s behalf, and on behalf of other children living with special needs in our Jewish community. We will work to ensure that there is a place for them within their faith community. Rabbi Bradley Artson says, “Goodness, justice and decency form the base [of Judaism].” That should be the foundation upon which all Jewish learning is built.

“My basic principle is that you don’t make decisions because they are easy, you don’t make them because they are cheap. You don’t make them because they are popular, you make them because they are right.” Theodore Hesburgh

 

 

When Faith & Inclusion Collide

“When we learn to be inclusive, we can be a world of shalem, or wholeness, and create a world of shalom, which is peace.” (Rabbi Ted Riter, Temple Adat Elohim, California)

This is not an easy post for me to write. It is a deeply personal story for our family and it is one of great sadness, disappointment, anger & disillusionment.  I know that it is a long post, but I believe that if you are a person of faith, it is an important investment of your time.  

Let me begin with a little background. My daughter is part of a wonderful special education program. The program is part of a Jewish Special Education agency which “provides a continuum of services to ensure that children, regardless of ability, can maximize their potential and participation in all aspects of Jewish education through partnerships with families, educators and the broader community.” The program itself is housed within a Jewish day school. When it began, the program was fully self-contained. Over the years it grew  & developed into a more “modified” self-contained program.  Those special education students who were able, began to participate in mainstream & remedial level classes with their typical peers within the day school classrooms. The true beauty of this dynamic was that students, like Yael,  could have the best of both worlds. If a student required small group, special education support in one subject area, they could receive that in the self-contained classroom. If they had a strength in another subject area, they could learn alongside the day school students, with support if necessary.   Some students found so much success within the typical classrooms, that over time they spent almost no time at all in the self-contained classroom & became almost completely integrated into the day school. 

From the moment that Yael began this program, she truly blossomed. She did receive some instruction in the small group, self-contained setting, but she spent a good deal of time out in the mainstream. She was part of the remedial level classes in Math & Language Arts, took Hebrew & Judaic studies in the mainstream, as well as Science & Social Studies (with support). She worked hard & her efforts were rewarded with excellent grades & reports from her teachers. She made wonderful friends both in the self-contained setting & the mainstream. We felt as if we had finally found a wonderful educational “home” for Yael, and for her sisters who were enrolled in the day school. The fact that all of this could be achieved in a faith-based setting, and that our children could grow not only academically & socially, but spiritually as well, was like a dream come true for us. I am not sure that I have mentioned this yet, but my husband is a rabbi & our faith plays a very important role in our family life & our children’s upbringing. So, all was good… or so we thought.    

As with any program that grows & changes over time, there were issues. When that program is housed within another institution, there are bound to be conflicts & concerns. One would hope that two educational organizations, each acting as “faith-based” programs, would be able to sit down with teachers, administrators & parents and work through any of the issues that would come up.  But, that is not always the case. This past year, the Jewish day school that we called “home” decided to pull the plug on all academic inclusion for the special needs children in Yael’s program.  When word got out that this decision was percolating, Fred & I  and many other parents whose children would be effected by this change, wrote letters, had meetings and tried to turn the tide before such a disastrous decision could be put into effect. We fought hard, but in the end we lost. The day school maintained that our special needs children were not a part of their mission statement. The administration shared that our students, who often came in with aides & who may have behavioral/social issues, were a distraction to teachers & students. They maintained that some children were being mainstreamed inappropriately, and there were issues of crowded classrooms & teachers who felt unable to teach. We were told that the declining enrollment numbers were not the fault of a floundering economy, but that our children were essentially to blame. Yet when parent after parent asked the administration not to simply throw out the existing program, yanking the rug out from under our children, but instead to work on these issues with the administration & teachers of the special education program, we were told there was no time for that. Truth be told, none of these issues were insurmountable, but they could only be solved by parties truly invested in making inclusion work, which the day school administration was not. My husband and I were told that not only was Yael not a part of the school’s mission statement, but that the administration made their decision knowing that angry parents might even pull the “typical needs” siblings out of the day school, and they were prepared for such a loss. Translation… none of my kids truly mattered. They were all disposable. Never, in all the meetings we had since Yael’s diagnosis, had I felt such a profound sense of loss & betrayal. Never had I fought so hard for her, only to come up empty-handed. My daughter became a casualty of an administrative decision that came from a faith-based school, that acted without faith. Her first brush with discrimination came at the hands of a Jewish institution. The first door slammed shut in her face, came from a Jewish school. I am still so angry, hard as I try to get past that. My daughter will be in a self-contained classroom next year, as she enters Middle School. This will not be because her parents & teachers decided that it would be best for her, it will be the result of a decision made by the leadership of the Jewish Day School.  

What is the responsibility of our faith-based institutions when it comes to our most vulnerable children? Should they be guided solely by a business mind, or should the values of their faith play a role in their decision-making? If you are to call yourself a Jewish school or a Christian school or any other school of faith, should the morals & principles of your religious beliefs be woven into the decision-making process? If not, then what exactly makes you different from any other school or institution? And what better way to teach the students of any faith-based school, the principles of compassion, tolerance, acceptance & good deeds, than to have them learn side by side with children who are differently-abled.    

This story doesn’t have a happy ending & I have not been able to find a silver lining. I can only say that what happened to my family, continues to happen on one level or another, within the walls of many faith-based institutions. Within our synagogue & church walls, within our private faith-based schools, we have yet to create a fully inclusive society. It is not enough to have a Disabilities Awareness Week or Month, because there are people within our community living 365 days a year with disabilities. Where are they to go, and how are they to feel the rest of the year? If we are all created in God’s image, than it is time for our faith-based institutions to recognize the divine spark that resides within all of our children and create for them an inclusive, accepting & tolerant community. I believe that is what my faith, your faith & God truly wants of us and I will continue soldiering forward to try to make that happen for my Yael. But I can’t win this battle alone. We must all take it upon ourselves to ask our clergy what they are doing to make our synagogues, churches & mosques more accessible. We must ensure that our Jewish, Christian, Muslim & other faith-based schools are not only for the “best & the brightest” but that faith-based education reflects the rich diversity of our communities. We must hold our clergy responsible for reaching out to those on the periphery, and partner with them in doing so. And, when we see someone who is differently-abled attending a service, or faith-based community event or school we must reach out to help them feel a part of our community, not on designated days or weeks or months, but each & every day. Perhaps if that begins to happen, than this sad story will have had some meaning. 

If you have some more time to devote to this topic, I invite you to listen to this podcast by Rabbi Brad Artson, father of a son with autism. His challenges to the Jewish community on inclusion have a message for all of us, no matter what our faith is. It is well worth a listen. 

Rabbi Brad Artson, \”Including People With Special Needs\” 

    

    

     

  

 

 

 

 

 

 

 

 

 

 

 

 

   

 

 

 

  

 

 

 

 

 

 

 

 

 

Roadmap to Faith

“The whole world is a narrow bridge, but the main thing is not to fear.” (Reb Nachman of Bratslav)

Navigating life on the autism spectrum involves a series of long & winding roads, uphill climbs & every now and again, a bit of smooth sailing. Unfortunately, you don’t receive any kind of roadmap when you arrive in “Holland.” Sure, there are lots of people there to point you in any number of directions, but you often feel like you are simply flying by the seat of your pants, trying to find your way.

Yael has faced many obstacles on the spectrum.

Some of the hardest roads to travel are those that leave you feeling emotionally lost. You climb to the top of the worry hill, then coast down the road of relief. You turn to push your child forward, then fear that you should hold them back. You gaze upon the street of dreams & wonder if you should even walk there. You try to look ahead down hope street, but first you must cross over your fears. You journey onward with your child knowing that for every step forward, somewhere around the bend, there will be a step back. It is a tiring journey, fraught with emotional pitfalls & detours. You have moments of sheer joy, optimism & pride followed by moments of angst, sadness & doubt.

And while there is no roadmap to this journey, I do believe there is for each of us, a compass. It is faith that can serve as our compass; faith in people, in friends, in our children & in ourselves. I also believe that the true guide on our journey is our faith in God.  I have turned to God often during my life on the spectrum. When I am depleted, I ask for strength. When I am full of fear, I ask God to help me find hope. When I am out of patience, I ask God to help me dig down deeper & find just a little more. When I focus only on the struggles, I ask God to remind me of the blessings. And when I have lost my way, I ask God to be my compass. Sometimes my tears serve as my prayer, other times it is my smile. Sometimes I lash out in anger & other times I sing with joy. And sometimes these are the words that I share with God as I cross the narrow bridge…

A Prayer for a Parent of a Special Needs Child and for All Parents of All Children

(From the book “Talking to God” by Rabbi Naomi Levy)

Help me, God, to embrace my child as she is. Teach me how to raise her in love, joy & confidence. Show me how to help her realize all of the gifts You have placed inside her. Prevent me from pressuring her to become what she can never be or does not want to be. When I find myself mourning for what she is not, open my eyes to the holy blessing that she is. When feelings of jealousy surface toward other parents, soften my heart, open my soul. When my patience wears thin, calm me with Your comforting presence. When I feel as if I have no more to give, be my strength, God, abiding & unending. When I hover over my child too closely, remind me to step back and make room for her to fly. If she should fail, teach me how to encourage her to try again. When others are cruel to her, place words of wisdom & comfort on my tongue and place fortitude in her heart. Help her, God. Watch over her. Protect her from harm. Shield her from frustration and hurt. Fill her with pride, God. Teach her to stand up for herself.  Grant her good health. Bless her with true & enduring friends. Nurture her awesome potential, God; let it flourish & become manifest. Let her be happy, God. Surround her with Your love. I thank You God, for giving me this very child. She is a gift of God, a precious child, a rare soul, a miracle. She is Mine. Amen.

Our future rabbi~a child of faith