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.

Dear Cottage School

If a child can’t learn the way we teach, maybe we should teach the way they learn. (Ignacio Estrada) 

Dear Cottage School Staff,

Last year at this time, our daughter was preparing to leave her 2nd school. Since moving here, she had spent two years in the public school system, and another three in a private school program. Both had failed to give our daughter what she needed. And so, we came to you with great trepidation, afraid to invest in yet another program, afraid that once again we would be let down & afraid that we would not find a place where our daughter could truly thrive. It is a horrible feeling to carry that kind of fear. Even worse is the feeling that no school wants to truly invest in your child, that they can’t see beyond the label & that they aren’t willing to nurture her potential. And so, this school year began and though our daughter was full of hope & optimism, we continued to carry that fear with us.

But what a difference a year makes. You have given our daughter wings and this year we have been blessed, truly blessed, to watch her soar. Ignacio Estrada said, “If a child can’t learn the way we teach, maybe we should teach the way they learn.”  That is the philosophy that your school & staff truly embody and embrace. Yael came home each day with a greater understanding of the materials she had learned. She did not simply recite rote facts, memorized for a test, but demonstrated a grasp of the concepts & content in a way we had never seen before.  She sat at the dinner table each night, sharing what she had learned, her voice full of excitement. And, with each passing day her confidence grew stronger. Never before had we seen that side of our daughter. Though she was a good student prior to this, she often did not retain what she had learned and we witnessed her ongoing struggles with projects, homework and classwork.  But you sought to gain an understanding of how she could best learn. You did not try to force a square peg into a round hole, asking that Yael learn only in the manner you thought best. But rather, you adapted your teaching styles, playing to her strengths & help to lessen her struggles. Because of that, she received the President’s Award for Academic Excellence. To say that such a moment was beyond our wildest dreams would be the understatement of the year.

An incredible achievement for our girl!

Last night, we were truly overwhelmed at the Middle School Graduation & Awards Ceremony. Our daughter was given a trophy and named “Most Dedicated” team member for Track & Field. As my eyes welled up, my heart about to burst, I turned to my husband and said, “Where else would our daughter have been given the opportunity to participate in a team sport, let alone earn a trophy?”  Perhaps those schools exist, but they have surely not been a part of our experience, and I am sure there are many parents of special needs children who would say the same. It seems that in so many ways, our schools have forgotten what the essence of team sports is really about. It is about learning a new skill, setting personal goals & striving to reach them and being a part of something bigger than yourself.  You gave our daughter a chance to experience that. The child who always hated PE, who was picked last for any team & who never once demonstrated any interest in playing a team sport, is now a jock with a trophy that sits center stage on her dresser!

Such a well deserved trophy!

Your program, and the philosophy upon which it is built, helped Yael to gain a greater sense of organization, responsibility & independence. You did not lower your expectations of her because of her autism, but rather you set the bar high and helped her to reach it. The time management system was an invaluable tool and allowed her to gain a greater sense of independence with her school work. The levels program and incentives for academic performance, responsibility & character were a driving force for our daughter. She approached each school day, assignment & program with the desire to move up the levels system. She strove to demonstrate character, to be a good role model, to be responsible & to be a productive and leading part of the school community. She did that because you asked it of her, because you expected it of her. Many times people hear the word autism, and they immediately lower their expectations of Yael. You didn’t and boy oh boy, didn’t she show us all what she is capable of.

On your website, you state, “The Cottage School’s history of success repeatedly demonstrates that students who come to the school disillusioned or discouraged–some to the point of ‘giving up’ on education–flourish in the school’s environment and emerge as independent, capable, and successful young adults.” No words could be truer, at least not for us. And I don’t know how I can possibly find the words to express our gratitude. Thank you is surely not enough to encompass all that is in our hearts. We owe you a debt of gratitude for giving our daughter a safe space to learn, to grow & to flourish. She spends each day surrounded by peers, all of whom have “stuff” of their own. But somehow these “special needs” kids come together to create a beautiful, supportive & communal atmosphere that is like no other. And they do so, through the leadership, support & encouragement of your teachers & staff. They do so, because you all believe in them and you don’t allow them to define themselves by their struggles, but rather by their strengths.

Yael went off to her last day of school today, tissues in hand. When a student says that they are really sad to see the school year end, you know you are doing something right. I have tissues of my own and I have cried many happy tears this year. I cried at basketball games & track meets. I cried at my daughter’s academic accomplishments, as well as her personal ones. I cried as she played the guitar & took the lead in her drama production. And as I write this letter, it is through a flood of tears and they are tears of gratitude.

Thank you to all who taught Yael this year. Thank you to all who work tirelessly each day to make The Cottage School what it is. You have made a difference in the life of my child. You have given me hope, where once there was only fear. I send Yael off to school each day and I know that she is in a safe place. In today’s world, that means more than you could know. Kids like mine are often the target of bullies, they live their educational life on the periphery, never being fully accepted into the mainstream. But you have given her a school, a community, where she feels at home. She feels accepted & valued for who she is and that is a gift beyond measure. Thank you for an amazing school year. We look forward to all that is yet to come as Yael continues her journey at The Cottage School.

I have never seen my child happier or more confident than she has been this year. What a difference a school can make!

It Starts With One ~ The Bully Movie

If I am not for myself, who will be for me? And if I am only for myself, what am I? And if not now, when? (Hillel)

Today my husband and I took our girls to a screening of Bully.  The screening was sponsored by BBYO (B’nai Brith Youth Organization), several area synagogues (including our own Temple  Beth Tikvah) & other local Jewish organizations. As I sit here trying to write this post, I am feeling emotionally overwhelmed by the film. It was a difficult movie to watch and I cried my way through most of it. But, as I told my girls, there are things in life that you must look at, hard as they are to see. You must open your eyes so you can bear witness, so you can understand, so you can learn & so you can respond. This is one of those times. And this was one of those movies.

Following the movie there was a brief discussion led by a facilitator from The Rainbow Center. Many of us left the theatre with our eyes red, our hearts heavy, feeling emotionally exhausted from what we had just seen.  Our family continued the conversation in the car ride & as we sat around the dinner table. We shared our feelings about what we had witnessed and talked about ways that we can make a difference in the lives of others. We went through each of the stories featured in the film and talked about what could have been done differently. What could the schools have done? What could students have done? And what could parents have done?  These are not easy conversations for a 13, 12 & 9 year old girl to have. But they are important conversations and these days, they might even help to save a life. My husband and I asked more pointed questions about what our children are seeing & experiencing in school, and what their peers may be contending with as well.

Bullying is not really the right term for the horrors we witnessed in this film. Emotional abuse, physical assault, psychological torment… these are words that are far more accurate in describing what the children featured in the film, and what 13 million children a year in our country, experience on a daily basis. Three million children are absent each month because they feel unsafe at school. According to Autism Speaks, “It has been suggested that children with autism spectrum disorders (ASDs) are especially vulnerable to bullying. The Interactive Autism Network (IAN) is now sharing initial results of a national survey on the bullying experiences of children on the autism spectrum. The findings show that children with ASD are bullied at a very high rate, and are also often intentionally “triggered” into meltdowns or aggressive outbursts by ill-intentioned peers. The study found that a total of 63% of 1,167 children with ASD, ages 6 to 15, had been bullied at some point in their lives. http://www.autismspeaks.org/family-services/bullying

So, in light of those statistics, here’s what I want to know? Why do we continue to define a School of Excellence by scores on a standardized test? Why do we assume that if a school can demonstrate high test scores, that no child is being left behind? In this film we were reminded in the most heartbreaking ways, that our schools are failing those students who are being victimized. School officials continue to turn a blind eye, saying kids will be kids. They belittle & ignore the cries of parents and children who come to them in the hopes of making things better. They throw their hands in the air and saying there is nothing they can do. Let’s be honest, any school can stick a sign on the wall and define themselves as a Bully Free Zone, but a sign does not make it so. In one sickening scene the school assistant principal forces a bullying victim to shake hands with the boy who has been tormenting him. When he initially refuses to do so, she then tells the victim that his actions make him just the same as the bully.  After all, the bully was offering an apology & his victim turned him away. Is this what it’s come to?  And this same assistant principal later responds to the concerned parents of another bullying victim by telling them that “School buses are notoriously bad places for lots of kids.” In other words, the torment your child is suffering is simply a rite of passage, deal with it, accept it, it’s just the way it is.  I can only hope that when the national spotlight reflects back upon this school, they will be shamed into doing something more.

Here’s how I would define a School of Excellence. It would be a place where children are consistently taught to respect their classmates, teachers & peers. It would be place where children feel safe to come and learn each & every day. It would be a place that puts a greater value on the humanity & dignity of the children they are educating, than on standardized test scores. It would be a place where students who degrade, dehumanize & victimize others face serious & immediate consequences. It would be a place that promotes & supports programs that teach about diversity not just one or two months out of the year, but as a core piece of their year-long curriculum. It would be a place that creates a culture of caring, compassion, kindness, acceptance & inclusion. It would be a place where character education matters just as much as academic education. Because I will tell you this. I want my children to get good grades, to do their best and to work hard in school. But more than that, I want them to be good people.

And as we left the movie today, I thought about the questions that so many of us ask our children at the end of their school day. We ask: How was your day? How did you do on that test or project?  What did you learn?  But, this film makes clear that it is no longer enough to ask those questions. We must go further. Children who are being victimized often don’t tell a parent what is going on until it is too late. They suffer in silence too embarrassed or afraid to tell. Perhaps they hope that it will simply pass or they believe they can handle it on their own. But they are just children and these are burdens too great for them to bear without us. And so, perhaps we must ask our children:

What kind of human being were you today? Did you show kindness to another person? Were you a good & supportive friend? Were people kind to you? Did anybody do or say something today that upset you? How did that make you feel? How can I help you with that? Are you seeing other children at your school being left out, picked on or ostracized?  How can you reach out to those people? How can you make a difference? Perhaps we need to ask them not only what they want to be when the grow up, but who they want to be right now?

We need to remind our children on a daily basis that they matter. We must tell them they are important. They need to know that we are their safe place. They can talk to us. I tell my children that often, but they can not hear it enough. They need to believe & trust in us to do everything  that is within our power to help them, support them, guide them, fight for them & to ensure that they can live their days free of fear and abuse. We need to remind them that there is always hope that things can get better. So that suicide, or brandishing a gun does not become the only way out they can see.

I believe this is one of the most important documentaries of our time. People have asked me to tell them whether I think it is appropriate for their children. That is not a call I can make. My husband had reservations about taking our youngest, who is only 9. But given the things she is exposed to on TV and the conversations we have had around shows like Glee, I felt that it was important that she come. And I am so glad that she did. The film was disturbing, but not overtly graphic. The conversation our family had following the movie was not an easy one. And it is a conversation that will continue. But I want my girls to understand what bullying really is. I want them to recognize it and the toll it can take on someone’s life. I want them to feel empowered to stand up for themselves & for others. And lest we believe that this is only happening in other places, other schools or to other people’s children… it was evident by the stories shared after the movie, that it is happening everywhere, in our own backyards, schools, playgrounds and on the buses our children ride each day. Several audience members who live here in Metro Atlanta are now homeschooling their children as a result of bullying & complacency on the part of the schools. So the bullies remain seated at their desk and the victims are forced to learn from home. When did this become an acceptable model of learning?

The film ended with these powerful words, “Everything starts with one.” Each of us can be that one. My children can be that one friend, an administrator can be that one safe person who acts on a child’s behalf. A school bus driver can be that one who stops the bus, reports the abusers and ensures that the bus is a safe place to be. A parent can be that one voice who speaks up, stands up & fights for their child. And soon enough one voice, becomes two and two becomes more and before you know it a chorus of voices will come together & bring transformative change. But, everything starts with one… and so, we must start.

Educating the mind without educating the heart is no education at all. (Aristotle)

To learn more about the film visit http://thebullyproject.com/

And visit http://standforthesilent.org/ an organization started by Kirk & Laura Smalley, following the suicide of their 11 year old son. The mission of this group is simple: End Bullying. Save Lives.

Just Put One Foot in Front of the Other

Alone we can do so little; together we can do so much (Helen Keller)

I’m all registered and ready to reunite our team for the 2012 Georgia Walk for Autism. Our team name, “The YaYa’s” is inspired by Yael’s nickname, given to her when she was only days old.

Every year I look forward to the walk. Some might wonder why that is. I’ll tell you…

First, the walk reminds me that there is strength in numbers. Looking out at a sea of people, numbering in the thousands, reminds me that our family is far from alone on this journey. The collective strength of the families, friends, educators & professionals that walk, demonstrates that we truly are a force to be reckoned with.  Sometimes it’s easy to lose sight of that when you are immersed in the trenches day to day. Truth is, we’re all part of something much bigger than ourselves & our own families.

Second, some might expect that an event like the walk would be filled with melancholy people full of sadness and a sense of defeat. Perhaps they envision a large group of self-professed victims, sitting around holding a gigantic pity party. That could not be further from the truth.  The feeling of hope, pride and unconditional love and support is palpable. T-shirts profess team pride, often championing a single child or loved one who lives with autism.  Phrases like, “Autistic Kids Rock” or “I am not a Tragedy” tell the world that though we want answers and a greater understanding of autism, we sure as hell don’t want to be pitied or appeased. We are proud mothers, fathers, sisters, brothers, friends & family of incredibly unique and amazing human beings who happen to have autism. Some may walk for a cure, others to raise money for advocacy, research & intervention, and still others walk simply because they want to stand up and be counted. And when we walk, it is with our heads held high, our chins up and our hearts full.

Third, from the moment that we step into the area where the walk is held, Yael can look around and see kids just like her. So much of her life she lives in the minority. One of the few kids in her school, at her synagogue, in her neighborhood or at her camp, who has autism. But at the walk, it is the total opposite. She sees younger kids, older kids & adults, all living with autism. She gains a greater understanding of the spectrum upon which she lives and gets to meet some of the neighbors who live there with her. It may not sound like much, but to her it is one of the rare & precious moments where she gets to feel as if she truly fits.

Fourth, let’s be honest. It is easy to feel drained as the parent of a child with autism. There is so much to do from advocacy to therapy, helping your child develop social skills and so much more. Sometimes I feel like I am running on vapors and my gas tank is on “E.” After spending a morning at The Georgia Walk for Autism, I always feel like I have been given just the boost of energy that I need to keep on going. I feel empowered, strengthened, emboldened and ready to keep doing what I do. I am reminded why I started this blog in the first place. It isn’t simply to write down my family’s experience with autism, but to try to raise awareness, encourage advocacy, inspire people who may just be starting out on this journey or simply to connect with another human being and let them know they are not alone.  But, I’m the mother of 3, the wife of a busy rabbi, a preschool teacher and a blogger. I don’t always feel like I am doing any one of those jobs particularly well, and when I am running low on time & energy, it gets even harder to strike a balance. While I would never turn down a good massage, a day to myself or the ability to eat tons of chocolate without gaining a pound, none of these things gives me quite the same boost as an advocate & parent of a special needs child, as this walk does.

And finally, I feel as if this walk is our family’s chance to stand together, to give back and to pay it forward all at the same time. We stand together as one team, inspired by our captain, Yael. We are a mother, a father and two sisters who are united in our desire to honor Yael, demonstrate our acceptance, love & pride in the person that she is and the lessons she has taught us. We give back to those who helped Yael get to where she is. We know with each step that we take that she would not have come this far without the devoted educators, therapists, friends and family who have accompanied us on this journey. They are often the unsung heroes, the behind the scenes talent that never take center stage. But we know who they are. We walk for them as well.  And we pay it forward with the money we raise. We help to fund advocacy efforts, research and interventions that are so incredibly important not only for family’s like ours, but for all of those who live with autism and those who love and care for them.

So, if you happen to be in the Atlanta area on Sunday, May 20th you should come check out the walk at Atlantic Station. If you want to join our team, we’d love to have you. The more the merrier. And if the spirit so moves you and you want to support our team, any donation big or small is sincerely & profoundly appreciated. And finally, if you’ve never participated in one of the nationwide autism walks, I sure hope you’ll consider doing it sometime. It’s a beautiful and powerful thing to be a part of.

http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=997071&lis=1&kntae997071=49F4EF23B8D14A758048739F70B1B0BE&supId=283471540

Hoops, Hopes & Heart

All kids need is a little help, a little hope and somebody who believes in them. (Magic Johnson)

Today is Yael’s first day of basketball practice. I am still shocked that I am even writing those words. This is the same child who always hated P.E., never liked to run and never once showed an interest in team sports. It’s hard to blame her really. She has poor visual spatial skills, low muscle tone and her fine & gross motor planning skills are still a struggle. That would be enough for most of us to steer clear of organized sports. But, her new school encourages all students to play at least one sport during the year. They have a “no cut” policy, which means that no matter the skill level or experience, anyone who wants to play can play. The only reason one can be cut from the team would be an unwillingness to listen to instruction and participate actively. In other words, if you bring the right attitude and “can do” spirit, there is a place for you on the court.

So, off my daughter went this morning. She had a huge smile on her face and an air of excitement surrounded her.  I asked if she was nervous, especially given the fact that she had never really played basketball before.  She was not. She was ready to simply do her best and have fun.  As  excited and proud as I am to see this new-found confidence that Yael has in her physical abilities, I am equally as hesitant. She will, after all, be playing on a varsity level. There are not enough girls in the middle school & high school who want to play, so they combine the two to form a team.  There are 24 scheduled games and she will be practicing every week, Tuesday through Friday, from 3:00-5:00. My husband and I keep quietly asking one another if it is more than she’ll be able to handle.  Will she have the stamina or will she begin to fizzle out halfway through the season? I mean, this is the same kid who tucks herself in almost every night at 8:30 sharp, announcing that’s she’s tired and needs to go to bed. She’ll be coming home from practices and games late, then there will be homework to get done. Will she be able to juggle it all, remain organized and not begin to get stressed out? Did I mention that her executive functioning skills are a struggle as well? No? Well, according to the last psychoeducational battery of testing, they still are.

But I must admit to an even greater fear & worry. What if, despite her best efforts & positive attitude, she hits the court and simply can’t play. In practice, with her peers, I know that will be okay. There, they will build her up, help her to learn & grow as she develops this fledgling skill. It’s the actual games that scare me.  I don’t want my daughter laughed at, or left feeling vulnerable mid-court when she misses the pass or can’t dribble & run at the same time. I mean, let’s face it autism & athletic ability rarely go hand in hand. The “what ifs” run rampant in my mind and I instinctively want to place a protective force field around my daughter. Wouldn’t it be safer to just stick with what she knows? On somebody else’s turf, on their home court, she may truly falter. And who will be left to pick up those pieces and build her back up, when she gets knocked down, suffers that first loss or begins to question her abilities?

The answer is clear… I will. I will show up at her games with a smile on my face. I will cheer from the stands with everything I’ve got. I will encourage her, believe in her and support her through every step, every dribble, every pass and every basket. I will quietly contain the fears and anxieties, recognizing that those belong to me and should never be placed upon her shoulders. My job, as a parent, is to step back and allow my daughter to pursue her passions.  I can guide her along the way, but she must learn how to follow her heart, her gut & her instincts.  Those are skills that will serve her well in life. So many will doubt her abilities along the way, believing that autism defines her, limits her and makes investing in her a waste of time & resources. She’ll need to prove them wrong.

So as hesitant as I am, I am also incredibly proud of my kid. I am filled with admiration for her courage, her fearlessness and her willingness to take risks, to try and to fail. She is braver than me. That is a fact. I am not so willing to put myself out there, particularly in such a public forum. To allow yourself to be vulnerable requires a depth of strength that is hard to come by. She’s got it. Perhaps autism is a blessing in that the “what ifs” don’t often exist in such a concrete & literal world. Maybe we would all benefit from a dose of that every now & again. Just think how much we might accomplish if we did. What hidden talents might we discover buried deep within ourselves?

So, I am going to do my best to bench those fears. I’ll end those “what ifs” with a healthy dose of optimism. What if she finds out she is good at basketball? What if she learns meaningful life lessons about being a part of a team? What if she shoots & scores? What if learning to lose with grace builds character? What if she truly surprises us all with undiscovered talents & abilities?  So, win or lose, whether she plays like an ace or fumbles through the game, if she heats up the court, or just warms the bench, I know my girl has the heart of a true champion. And no matter what, I will always be her biggest cheerleader and her number one fan.

I love to see a young girl go out and grab the world by the lapels. Life’s a bitch. You’ve got to go out and kick ass. (Maya Angelou)

Labels: They’re Not Just For Clothes Anymore

“Knowledge is power.” (Sir Francis Bacon)

I got a phone call this past week, from a woman who was considering having her child evaluated for what she feared might be some significant developmental issues. A mutual friend had referred her to me, in the hopes that I could offer her some insight & comfort based upon my own experiences. When I asked this friend whether she wanted my insights as a parent or as a person with a background in Special Education, she answered, “both.”

So, as I sat on the phone with this mother, who was clearly afraid and in pain, I listened to her story with patience, compassion and a great deal of empathy.  Finally, after providing me with many details about her child, her experience with the schools and her frustrations at not being able to do more as a mother, she offered up a question. She asked me if I had ever feared having my child “labeled.” When I asked her to clarify her question, she very candidly shared that one of the fears she carried with her about having her child evaluated is that in the end they might actually find that something was “wrong” with him. Once they have that “label,” she continued, it will be with him for life.

It’s not really something new, this fear of labels. I encountered it first when I taught Elementary School in New York. Meeting with parents to share their children’s struggles, be they academic, social or both, would always go in one of two possible directions. The first, and I would venture to say more common response was the “not my child” stance. These were the parent who were unwilling to even entertain the possibility that there was something different about their child. They would not agree to consent for testing, nor did they feel that the pages of evidence put before them demonstrated anything other than a teacher’s inability to reach their child.  I never believed that this parental response reflected a lack of care, love or concern for their child. Rather, it was always clear that shrouded within those words was a genuine fear. The fear that their child might be “different,” that he or she might have “special needs” or that perhaps, there might be some real developmental issues that were beginning to manifest themselves.

The other response that would come out of these conversations was the “okay, tell me what we need to do” response. These were the parents who recognized not only the academic and social evidence that their child was clearly struggling, but they also saw the impact these struggles were having on their son or daughter. There was the loss of self-esteem, the frustration, the feeling that somehow they were “dumb or stupid” because they just didn’t get it. There were the social deficits that would only grow bigger as their child aged. These parents recognized that “something” was going on and wanted desperately to figure it out so that they could help their child to find success.

Two different responses led to very different results. For the child whose parents said, “not my kid,” the struggles continued. And though I always gave everything I had to that student, it wasn’t enough to help them reach their fullest potential. The roadblocks to learning remained in place, and without being clearly defined, they were an unknown obstacle that I couldn’t plan for or work around. I watched those students struggle and it just broke my heart.

For the child whose parents said, “tell me what to do,” the results were often different. Understanding what the issues were & how their child’s brain worked allowed us to come up with a plan of action. With the information at hand, we could recognize the obstacles and map out ways to work around them. Having that roadmap allowed us to gain insight & understanding into why that child was struggling and help us find the best and most effective ways to reach & teach them. Those were the children who more often than not had a happier ending to their story. Perhaps not the one their parents had first conceived of, but it was one that allowed them to find a greater level of success & achievement than they would have otherwise.

So, let’s fast forward to my own child. At age 3, I had already seen and recognized that she simply wasn’t like the other kids. I had watched her growing frustration at not being able to fully communicate her needs, wants and feelings. I had seen the social & developmental gaps widen between her and her peers. And though I might smile  at what seemed to be cute little “quirks” or “idiosyncracies,” inside I knew that there was more to them. Red flags were popping up, some bigger than others, but enough of them that I knew we had reached a crossroad. The choice was simple. Which kind of parent did I want to be? A “not my child” parent or a “what can we do parent.” Did I want to ignore the obstacles, thereby creating new ones further down the road? Or did I want all of the information that I could get so that I might be able to give my child all that she would need to find her way and reach her greatest & fullest potential? I chose the latter.

Was it the easier choice for me? Hell no, it wasn’t. Would it have been easier to pretend for a little longer that she might grow out of it? Easier for whom? Did it break my heart to see in black and white all of the ways in which my child’s development was delayed? You bet it did! Did the words “on the autism spectrum” fill me an overwhelming sense of fear, sadness and angst? More than words can ever truly express. But, did I also find clarity in finally understanding what was going on with my child? Absolutely! Did I fear the unknown and the inability to help her, more than I feared the label? Unequivocally, the answer is yes! Was having her picked apart and analyzed, revealing all of her developmental delays, worth it? Well, every insight that we got allowed us to come up with a plan of action. For every weakness that we found, we mapped out a way to strengthen it. For all of the gaps that we discovered, we found strategies to bridge them. For every label that we had to come up with, we qualified for intervention & services that would help our daughter. So, hell yes we took those labels. We knew that they didn’t define her, they still don’t define her. But they helped her and they helped us to help her.

This week Yael will turn 13. We have lived with the label of “ASD” (Autism Spectrum Disorder) for 10 years. We lived with the signs & symptoms long before that, we just didn’t know it. That label opened the door to a world of therapies: occupational therapy, speech therapy & physical therapy. It opened the door to a new world of education complete with paraprofessionals, social skills classes, push in & pull out support, as well as mainstreaming & inclusion. We have used that label to fight to get our daughter everything that she needed in order to thrive. We have used it to help her understand herself better so that she can become her own advocate as well. We have never let it define her, nor has she. We have never given that word more power than it deserved, nor have we underestimated what it means. Even with that label, the road ahead is not clearly laid out. But whose is? She may go on to accomplish feats that we never dreamed of… in so many ways she already has. She may also come to a place where she must park & settle in, unable to go further. We’ll cross that bridge if and when we come to it.

I shared all of this with the mom who had called me. I don’t know what she’ll do in the end, but I hope she will move forward and have her child evaluated. I hope she won’t let her fear of the label get in her way. I thank God each and every day that I didn’t. If I had, this beautiful, confident, bright, compassionate, funny and loving young lady would never have gotten as far as she has. And I would have never discovered the depths of maternal strength & fortitude that I possessed.

We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face… we must do that which we think we cannot. (Eleanor Roosevelt)

A Square Peg in a Round Hole

To be nobody but yourself in a world which is doing its best, night and day, to make you everybody else means to fight the hardest battle which any human being can fight; and never stop fighting.  ~e.e. cummings

 

There is an analogy that was shared with my husband and I several years ago. I can’t remember if it was told to us by one of Yael’s therapists, or a friend whose child also had special needs. It doesn’t really matter what the origin was, the analogy itself has always stayed with me.  Imagine your special needs child as a beach ball. In order to conform, to fit in and work at being socially appropriate throughout their day it is as if they need to hold themselves underwater.  If you’ve  ever spent anytime at the pool or beach, than you know the effort it takes in order to keep that beach ball submerged. That is the same level of effort our kids have to put into learning to read social cues, follow social norms, model appropriate behavior and so on. It is exhausting . For many of our kids, at the end of the day, when they have put all that they have into being submerged in the “neuro-typical” world, they let go. Sometimes they go “flying” off the handle, much like that ball will go flying up into the air when released. Or, as was the case for our daughter, they wash up on the shoreline, exhausted, and simply “done” for the day.

So much is said about the importance of mainstreaming, and believe me when I say that I am indeed a proponent of this idea. I believe that, given the right environment & support,  our children do learn a lot from their “neuro-typical” peers. I have seen the benefits for my own daughter, particularly after her return home from sleep away camp this summer. She spent 3 & 1/2 weeks living amongst a cabin of ”typical” girls and I saw tremendous growth upon her return home. Yael has spent much of her school experience, from kindergarten forward, immersed in the “neuro-typical” mainstream world, and I credit a great deal of her progress over the years to that experience.  Still, I have often wondered what it feels like to be that “beach ball.” What goes through her mind when it seems as if she has to gauge every feeling, every response, every social step she takes against the norm. How does she muster up the energy to do all of that, and still have enough left over to manuever through math, social studies, language arts and all of the subjects she is expected to master?  We talk so much about the benefits of mainstreaming and we fight tooth and nail to give our special needs children every opportunity for it that we can.  It’s hard to imagine there is a downside to that push, but sometimes I can’t help but wonder. What is it like to spend your day as a square peg, constantly trying to conform to fit into a round hole?

Just a few weeks ago, Yael started attending a new school.  It was so amazing to see her excitement building as the new school year approached. Her dad and I shared her excitement, but admittedly we also had a lot of angst and anxiety. Not only was this the third school that Yael would be attending since we moved to Atlanta, but this was the first time that she was not going to be “mainstreamed.” The school she is now attending is a school for children who learn differently.  There are a variety of kids to be found among the student body. Some kids have learning disabilities, some ADD or ADHD, some are on the autism spectrum and others are there because they have social, emotional or educational challenges. In other words, every kid there has “something” about them that is “different.” We worried about whether or not Yael would be losing something by attending a school like this, yet this is exactly the school that seemed best suited to teaching her and helping her to gain self-confidence, independence and a sense of personal responsibility.  It seemed as if we had to weigh what was most important for Yael, while acknowledging that no educational choice we made could possibly have it all.

But it turns out, that what we saw as a sacrifice in her schooling, turned out to be a blessing in disguise. Yes, we gave up traditional mainstreaming, but in return we have had the gift of watching our daughter thrive as a square peg, finally given the chance to fit into a square hole. We have enabled her to be educated in a school where she doesn’t have to feel so different all of the time. Think about it. We’ve all been in that situation where we are the “only one” of our race, gender, ethnicity or religion. What does that feel like to us? That sense, that constant sense, of being different, of not fitting in… looking around and not seeing anyone like us. That is how a special needs child spends most of their days. It is how Yael spent most of her days… until now. I watch Yael amongst her school peers and I see a child who is growing more comfortable in her own skin. I see her making friends who get her, who accept her, and who move beyond simply being friendly to truly befriending her.  I see her gaining confidence, so much so that my Yael ran for and was elected to the student council. She created a slogan, made posters and sought out the votes of her peers. I feel as if for the first time in her school experience, Yael feels as if she can just be herself. She doesn’t have to put all of her energy into remaining submerged underwater like that beach ball.  She is free to put that energy into her school work, her extra curricular activities and her own personal and social goals. She is free to be Yael, just as God made her; a beautiful, intelligent, thoughtful, creative, funny, compassionate, complex and unique square peg who deserves the chance to simply feel as if she fits.

Yes, mainstreaming will always have a place in Yael’s life. But this experience with her new school has taught us a valuable lesson. We must also provide her with a balance, to free her from that feeling of being submerged, so that she is free to soar.

“Today you are you, that is truer than true. There is no one alive who is youer than you.” (Dr. Seuss)

Allergic to Ignorance

“The good we secure for ourselves is precarious and uncertain until it is secured for all of us and incorporated into our common life”. (Jane Addams)

In Jewish tradition, a great sage named Hillel said, “If I am not for myself, who will be for me? If I am only for myself, what am I? And if not now, when?”

I am sure you have all heard the story by now.  A six-year-old girl in Edgewater Florida suffers from life threatening peanut allergies. The allergy is so severe that it is considered a disability under the Americans With Disabilities Act. To protect the girl, students in her class at Edgewater Elementary School are required to wash their hands before entering the classroom in the morning and after lunch, and rinse out their mouths (with water). Peanut products are also not allowed in the classroom, and the students are required to leave their lunch boxes in the hall. The students’ desks are wiped down with disinfectants and the school has installed peanut-free zones in the campus and in the cafeteria.

According to Nancy Wait, the spokeswoman for Volusia County Schools, the school “is legally obligated to take these safety precautions because of the Federal Disabilities Act. It would be the same thing as putting in a handicap ramp for a student that is physically disabled. The only difference with this is that is affects other students.”

Enter the protesters. A group of parents and children began to protest outside of the school, with picket signs and a call to end the accommodations being provided to this child. One parent, Chris Burr, a father of two older students at the school whose wife has protested at the campus, said a lot of small accommodations have added up to frustration for many parents. “If I had a daughter who had a problem, I would not ask everyone else to change their lives to fit my life,” said Burr. Other parents have called for the girl to be removed from the classroom and home-schooled, rather than deal with special rules to protect her health, according to a school official. Parents claim that the requirements put into place are taking “up to 30 minutes of educational time away from their children each day.”

The girl and her family are deeply hurt by the protests. “We’ve fought very hard to put certain things in place to keep her alive in school,” David Bailey, the father of the student with the allergy, told My Fox Orlando. “She’s already a cast-out. She can’t do most things kids can do.”

 

I find it ironic that amidst all of this talk about education, a very real & poignant “teachable moment” is slipping by. A moment for parents to teach their children the meaning of compassion. A moment to teach their children about acceptance. A moment to teach their children to live out that Golden Rule of “Do unto others as you would have them do unto you” and to ”love thy neighbor as thyself.”  A moment to teach their children about being inclusive. If education is about lessons, than these are lessons lost. And they are not simply lost for this little girl and her family, but for all of us trying to raise children with special needs. How many times have we heard it? The concerns that placing our children in the classroom will negatively impact others. That our child will require too much attention & will take away from the education of the other students.  My own family lived out this scenario in real life just last year at our children’s Jewish Day School and I know that we are not alone.

 

Aristotle said that, “Educating the mind without educating the heart, is no education at all.” So, what can the students in Florida, and students everywhere, learn in that time that they are washing their hands, wiping off their desks & placing their lunches outside of the classroom? Are those really “30 minutes lost” in their educational lives? I don’t think so. I think it teaches them the very real lessons that they will need to be truly successful in this life. They learn what it is to work side by side with someone who is different. They learn responsibility and patience. They learn to look out for one another, and that even the most vulnerable among them is deserving of their efforts. They learn what it is to be a caring community and they learn that yes, we are indeed our  brother’s keeper. When did these lessons become less valuable than those taught in the textbooks? And if we don’t begin to teach them now… then when?

“No one has yet realized the wealth of sympathy, the kindness and generosity hidden in the soul of a child. The effort of every true education should be to unlock that treasure.” (Emma Goldman)

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\”