In Her Own Words ~ What The Walk Meant to Yael

Yael, Leora & Noa ready to walk for The YaYa’s!

Today Yael wanted to share her own thoughts with you. So, here is her perspective on today’s Georgia Walk for Autism.  In her own words…

This is our fourth year walking for autism. While we were driving to Atlantic Station, my Mom and I were talking about why we do the walk. We talked about raising awareness and raising hope.

Today, we did. We raised awareness by inviting our friends and family to walk with us. We let our teammates know about what we want to accomplish this year and about why we want to do the walk. We also raised hope. I know I feel hopeful by looking at how many people are more aware of autism and caring for those who have autism. Today felt great because of all the people we walked with, who love someone with autism.

I am so happy that my friends and my family care for me and that they want to help raise money for organizations like Autism Speaks and The Marcus Institute. For me, on a personal level, I am happy to be different. I feel special with autism. It’s part of me. I feel special every year when I walk. I feel cared for by my parents who have helped me since the beginning of my diagnosis, my sisters who make me smile from their cheering, and my best friends who were so sweet to take their time off & walk with us since the beginning of The YaYa’s. It means a lot that they come and are  always there for me. I also loved having my newest team member and homeroom teacher, Lauren, because she knows what it is like to work with special needs kids and is always there when I have a problem at school.

I hope that I can inspire others who are living with autism.

This is what today felt like for me… in my own words.

Me & My Girl!

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.

Out of the Mouths of Mothers…

In moments of great heartbreak, I’ve been on my knees & cried

In the midst of stares & judgement, I have truly tried

to teach, to talk, to listen

to make others understand

I’ve fought with words of eloquence

And with strength to take a stand

I’ve been praised for poise & thought

In the stories that I write

I’ve rehearsed my lines, the arguments

I must take into each fight

But sometimes I simply offer

The unedited version of me

The raw emotions I sometimes feel

The ones you may not see

Just beneath the surface

Beneath the humor & the tact

They too are a piece of me

And I would not change that fact

I’m just a mom whose trying

To make sense of it all

To guide my daughter on this spectrum

To help her when she falls

I can find humor in the foolish

Strength among the scars

Rainbows hidden in the clouds

And solace in the stars

But ignorance can bring out

The angrier parts of me

The words far less appropriate

Than others want to see

But when it comes to my kid

I’m a protective mama bear

Sometimes my patience just runs out

And tempers surely flair

When tears of rage are streaming

And flowing down my face

When ignorance runs rampant

And seems to occupy every space

I’m entitled to simply let it go

To let loose and safely share

 Amongst those who love me

Or those who have been there

When I write, it is a piece of me

A reflection of my life

The good, the bad, the ugly

The joy & yes, the strife

The things that make me proud

And others, not so much

The lessons that I’ve learned

The lives my girl has touched

The battles we have waged

The failures on the way

The milestones my girl has met

Since diagnosis day

So if my words are chosen with eloquence & care

Or if they are unfiltered

More primal & laid bare

Do not stand in judgement

This road is ours alone

I have not walked in your shoes

And I can never know

What makes you scared & angry

What keeps you up at night

What worries course through your veins

What battles you must fight

So I’ll continue writing

And I’m gonna keep it real

This blog is my sacred space

A place where I can feel

The language a reflection

Of what autism brings with it that day

And the imperfect words this mommy

hopes to share along the way…

The Theory of the Day…

 

So, let me get this straight?! On national news they announce a possible connection between obese birth mothers and autism. Sounds like they’ve really researched this well right?! Not! Here’s the first troubling piece of fine print: “Although the study looked at obesity in the mothers, it lacks information on women’s diets and other habits during pregnancy that might have influenced fetal development.” Then we get: “Researchers say the study does not indicate cause and effect – and further research must be done to confirm the results.” Great, let’s announce it on national TV, blame the moms for giving their kids autism & then quietly whisper, oh by the way these are only preliminary results from a single limited study of only 1,000 California children. Why is it that everybody and their grandmother who has a theory as to what causes autism seems to be given a national platform without being asked to credibly & fully substantiate their findings with well documented scientific research?! I’m so sick of it…

 

 I have to be fully upfront and honest here and say that in my own personal opinion there has been overwhelming, credible, long term scientific research disproving a connection between autism and vaccines. I am a firm believer in vaccinating children, but also believe parents should have the option to spread out the schedule of vaccines. I do however, respect that others are fully entitled to their own opinions and thoughts on this issue. What I am tired of is the ease with which preliminary and limited studies like this are featured on national forums and somehow become accepted scientific fact. Much as I hope we can unlock the mystery of autism someday, I’d like to see a shift in priorities that begins to put serious effort into how we can best reach, teach, support and care for those with autism. Long term affordable housing that is safe, access to services, better educational opportunities and more. I believe that my daughter was born with autism. I don’t give a crap about Donald Trump’s opinion, which was also given national coverage, nor do I want to hear how Jenny McCarthy “cured” her son’s autism, but with no scientific evidence she too is given a national platform. All this does is muddy the waters of real, important dialogue that needs to be happening about how we can better serve those with autism and the families that love them.

 

Whose got a theory on that? And while we are at it, this mother wants you to know that she’s got enough on her plate. Matter of fact, my cup often runneth over into large puddles on the floor…  so you can keep your guilt, shame & blame to yourself.

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.

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

Dreams

You see things; and you say, “Why?”  But I dream things that never were; and say, “Why not?” (George Bernard Shaw)

I have so many dreams for my daughter. I dream that one day she will live in a world where she will be judged by the content of her character and not her diagnosis of autism. I dream that people will not immediately underestimate her, when they learn of her diagnosis. Instead, they will take the time to see all the potential that lies within her.  They will see her humor, compassion, intelligence and one of the most beautiful, gentle souls to ever walk the face of this earth. I dream that one day, I will not have to fight so hard to ensure that she has equal access to opportunity, education and the chance to live as independent a life as possible. I dream that there will come a time when our society will help to ease the crushing financial burdens placed upon families like ours, as we try to provide every form of intervention, education, therapy and medication that our children need to reach their truest potential. I dream that we, as a society, will stop assuming that simply because someone can not speak, that they have nothing to say. I dream that advancements in technology will continue to unlock the voices of so many autistic children and adults, trapped in a world of silence. I dream that our most vulnerable children will no longer be subject to bullying and abuse. I dream that there will no longer be a month, week or day designated to autism awareness, but instead that awareness will permeate each & every day of the year. I dream that my child will get to have her happily ever after, even if it is not the one found in fairy tales & fables. I dream that in her life she will be blessed with true and enduring friendships, and not simply kind acquaintances. I dream that she will get to experience true love and the opportunity to travel through life with a supportive, accepting and loving partner by her side. I dream that she will always continue to believe in herself and her dreams. I dream that she will have a forum one day to teach others so many of the incredibly valuable lessons that she has taught me. I dream that every parent out there, who is burying their head deep in denial, too afraid to accept that their child is on the spectrum, will look at my daughter and see that it is not a death sentence. I dream that we will unlock the mystery of autism and gain a better understanding of this puzzling disorder. Knowledge is power and I dream that we will have more of that one day. I dream so many dreams for my daughter and for the world in which she must live. But dreaming alone is not enough. And so, I will do more than just dream. I will act.

Keep your dreams alive. Understand to achieve anything requires faith and belief in yourself, vision, hard work, determination, and dedication. Remember all things are possible for those who believe.  (Gail Devers)

 

 

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)

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