Miracles

“The only whole heart is a broken one because it lets the light in.” (Rabbi David Wolpe)

Tonight, we will celebrate the fourth light of Chanukah. As we light the chanukiah, commemorating the miracle of the oil, our family will also stop to reflect upon our own little miracle. Our youngest daughter Noa will celebrate her heart-a-versary, the day that the doctors at Yale-New Haven Children’s Hospital saved her life.

I remember it as if it were only yesterday. There are moments in your life that become seared into your memory. December 23, 2002 is forever marked in mine. Noa was only 3 & 1/2 weeks old.  She was frail and weak, born full term at only 4 lbs. 15 ounces. Now, she was down to 4 lbs. 11 ounces. Simply to eat, required more energy than her little body had to give. She had been on blood pressure medication and diuretics since her diagnosis only 3 weeks earlier. Brand new to this world, and already given syringes full of medications designed to save her life.  No more than two-hour intervals passed in between her feedings. She drank from a preemie nipple, too weak to suck her bottle through an infant nipple. Her formula did not follow the directions on the box. Instead, we mixed  double the formula powder with half of  the water, trying desperately to increase her calories, fatten her up and get her a little bigger, a little stronger, for the open heart surgery she would have to endure. It hadn’t worked.

Our baby was in full-blown congestive heart failure by the time we handed her over to the anesthesiologist at the hospital on that cold, dark winter morning. As we waited for them to take her, I tried to memorize her face, her smell, her touch, her everything, before they took her away from me and into the operating room. What if she didn’t come back to me?  Yes, I knew that we were fortunate that her heart defects were the “most common” types of heart defects. We were reminded constantly that her doctor performed this type of surgery “all of the time.” But he didn’t do it on my baby every day.  There was nothing common or routine about this to me,  to my family, to my precious little girl, so new to this world and already fighting for her life.

I placed her little body and her life into their hands and I watched as they walked away. I waited until they were out of sight, and then my husband and I walked through the doors to the waiting room and I fell to my knees crying.  It was a primal kind of fear & anguish that is hard to describe unless you have lived it, and I pray you never have to. You never fully recover from experiencing that kind of fear, it leaves a scar.

They put Noa on heart lung bypass and she was on that operating room table for just over 7 hours. It was only later, after she had recovered and begun to grow stronger, that my mind even allowed me to think about her lying there. I would wake up crying and screaming from nightmares so vivid that I could barely catch my breath. It was my own form of post traumatic stress, my brain first processing what it could not allow me to take in during those earlier days.  When the doctor came out of the operating room,  he told us that our baby girl actually had an additional heart defect that they found when they went in. One little baby, her heart so very small, 3 congenital heart defects. He told us that she was one of the sickest babies he had ever operated on, telling us she looked as if she had “wasting syndrome.” It was true. She was skin and bones. Not an ounce of baby fat to be found on her weary little body.  And then he spoke the words that remain forever etched into my brain. “You were only days away from losing her.” Days we didn’t lose due to the watchful eyes of her doctors and I believe, by the grace of God as well.

Have you ever wondered how you might say thank you to someone for saving your child’s life?  I guess I should have thought about that, in the weeks leading up to Noa’s surgery. I mean, I had been given some time to prepare my words, as he labored with his team to save my baby girl. But, as Dr. Gary Kopf, cardiothoracic surgeon, walked us through the surgery, there were so many things going on in my head, that I simply couldn’t get my thoughts straight.  When the time came, I simply placed my hand on his, looked him tearfully in the eyes and said, “thank you.”  It was all I could get out, though he deserved so much more.

When we saw her in the PICU, we began to look first, as someone had told us, at her feet. That was the only part of her that did not have wires, tubes, bandages or blood.Then, slowly, we took it all in. Our little Noa, only a few weeks old, lying in that giant hospital bed, not breathing on her own, sedated, hooked up to tubes and wires, under plastic heating blankets and surrounded by nurses, doctors and so many machines. It’s not supposed to be like this, I kept thinking. I kissed her forehead and whispered to her that we were there with her, that she wasn’t alone. I told her over and over again,  that we loved her and we would be with her so she shouldn’t be afraid.  It was my mantra, spoken as much for myself, as it was for her.

Those first 24 hours were critical they told us. And as we settled into our first night in the PICU, the constant beeps and alarms of the machines hooked up to our little girl, terrified us. It was the nurses who got us through. They took care not only of our daughter, but of us, so calming & reassuring, so human. We were to take turns sleeping that first night. I sent my husband off for the first shift, in the little sleeping quarters off of the PICU. I never woke him for my turn, I couldn’t leave her. I lay my head as close to her little body as the machines, tubes and wires allowed, and I stayed with her. I was her mother, and I simply couldn’t leave.

In the morning, when my husband came in,  the doctor’s arrived to take Noa off of the ventilator and see if she would begin breathing on her own. It was the first test in her recovery.  Thank God, she passed and began to breathe on her own. On 12/24/02 at 10:30 AM her eyes opened and staring into those precious baby blue eyes, were my tired, weary, puffy, tear filled brown ones. I didn’t know it at the time, but the nurse had snapped a photo, telling me that one day I would want to have that moment recorded. She was right. My baby tried to cry, she was frightened and in pain, but her throat was swollen from the ventilator and all that came out was a primal whisper of a cry that broke my heart. How helpless I felt unable to ease her pain fear in that moment. I wanted to hold her, but I couldn’t. So I stayed where I was, looked her in the eye and told her over and over again that I loved her, that she was not alone and that it was all going to be okay.

We stayed a week at Yale. My husband and I took shifts staying with Noa, and returning home to shower, sleep and spend a few precious moments with our other daughters. Noa Greene, the little Jewish baby with the Hebrew name, daughter of a rabbi, was visited by many Christmas elves as she lay in the PICU on Christmas. It was a beautiful thing to witness the stuffed animals, handmade quilts and little baby toys that were so generously donated to the hospital, and appeared on her bed.  Faith, no matter the denomination, can be a true wonder to behold. Miracles can come in all shapes and sizes. They can be found in the kind acts of volunteers who cheerfully hand out gifts to children, or who donate a catered Christmas dinner for the staff and families spending the holidays in the  Pediatric Intensive Care Unit. They can be found in the healing hands of doctors and nurses and in the love and support of family, friends & community. Miracles can be found in ancient stories of old, in the story of oil meant only to last for one night, that burned for eight. And, miracles can be found in the heart of a little girl who will celebrate her heart-a-versary tonight, a strong, vibrant and healthy child, whose story continues to unfold with each & every blessed day.

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)

Every Picture Tells a Story

You don’t take a photograph.  You ask, quietly, to borrow it.  ~Author Unknown

Just last night, my husband came into the family room and shared this beautiful picture with me. It had been sent to him by one of the rabbis up at Camp Coleman, along with a lovely note about our girls. I stared at this picture for some time, drinking it in and basking in my daughter’s beautiful smile. Arm in arm with her friend, celebrating her first Shabbat at Camp Coleman, my daughter looked so very happy. And as I looked into her eyes and relished the joy on her face, I felt as if I could hear her voice, sharing a message with me. The picture began to tell me a story and it went like this….

Hi mom, it’s me Yael. I’ve been at camp for a week now, and I know how worried you have been. But mom, I’m doing really well. I have shared the story of my autism and my friends really listened. They have been so accepting & kind and they have never once made me feel different. I love it here mom.  Letting go wasn’t an easy thing for you to do & I understand that, but you have given me such a gift. I have met & made some wonderful new friends and I am trying all sorts of new and fun activities. Some of them are hard for me, but that’s okay mom. I’ve learned that all of the kids here have strengths & struggles, even if they don’t have a disability. In that way, I’m not so different from everybody else. I feel like I’m growing & changing this summer. I’ll come home to you a more mature, more independent kid. Isn’t that the way it’s supposed to be? After all, I’ll be a teenager in just a few months, and as it says in one of our favorite Hairspray songs, “Mama, I’m a big girl now.” Camp Coleman has truly begun to feel like my home away from home this summer. I feel safe here, supported, loved & accepted. There is something so special about this community. Leora spoke about it all the time after last summer, and now, I truly get it. Celebrating my first Shabbat here, all of the campers dressed in white, joining together in Jewish music, prayers & dance… it was beautiful mom. The Jewish “neshama” (soul) of this place can’t really be described in words… you just have to be here to experience it and you’ll know what I mean. So mom, I know you’re still going to worry, because that’s just what moms do. But look at my picture… really look at it. I’m happy mom, truly, truly happy. You’ll see it in my smile and in the way my eyes light up. You’ll see it reflected in the joy on my face. You’ll see it in the way I’m standing arm in arm with my friend. Can you see it mom? I know that you can. I love you mom.

If a picture is worth a thousand words… those are the ones I hear when I look at this one.

Holding On & Letting Go

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

 

 

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

 

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

 

 

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

 

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

 

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

 

 

 

 

 

Resolutions

In this new year, filled with promise~this is my hope. That I will give these gifts to my daughter as we continue our journey on the spectrum. May God give me the clarity, the will & the strength to…

Believe~in the infinite possibilities that lie within my daughter. Even when others are blind to them.

Hope~that for every storm that autism brings our way, a rainbow will follow.

Laugh~more than I cry. Because, as The Indigo Girls said, “It’s only life after all.”

Learn~all that my daughter has to teach me. The lessons are endless, if I am open to them.

Fight~for her place in this world. No matter how tough & tiring the battle and no matter the strength of my opponent.

Listen~to what she is saying, even when she can’t find the words to express what is in her heart.

Love~all of who she is, even when autism challenges my parenting to the core & God knows it will.

Let go~stand back & let my daughter try. Even if it means she will falter & fail. That is how she will learn and grow.

Be present~and not let the worries of tomorrow & the struggles of the past, diminish the gift of today.

Share~our story, her story. To humanize autism and give it a face, is to create a more tolerant & accepting society. I want so much to give that to her.

Struggle~even when it would be easier to throw my hands up and walk away.

Stop~take a breath, count to ten, walk away… and come back to my daughter with a renewed sense of patience.

Nurture~her strengths, her abilities and most importantly her sense of self.

Challenge~her fears & her anxieties. In helping her to conquer those demons, she will see that she is far more powerful than they can ever be.

Get up~and brush myself off, every time that autism kicks my mothering ass.

Comfort~when the days are hard, the kids are mean & the world seems a cruel & unfair place~may I make our home a haven, a safe place~shelter from life’s storms.

Guide~but not lead. My daughter needs to set her own course sometimes. I can be her compass.

Forgive~myself on the days when I miss the mark, when I am not the best mother I can be. When one or more of these resolutions falls by the wayside, may I be kind to myself, let it go and resolve to do better tomorrow.

“Year’s end is neither an end nor a beginning, but a going on, with all the wisdom that experience can instill in us.” (Hal Borland)

I am a Mother

Our lives begin to end the day we become silent about things that matter. (Martin Luther King, Jr.)

I will never apologize for fighting for my child. I am a mother. I won’t simply ask for inclusion, I will work tirelessly to make it happen. I don’t apologize for making waves so don’t ask me to simply tread water. Have you walked a mile in my shoes? If you haven’t than you don’t know the hills I have had to climb, the rough roads that I have had to travel and the stumbles that have knocked me down. I am a mother. I have laid awake at night worrying about my child’s future. I have shed more tears than I can count as I have watched my child learn to live with a lifelong developmental disability. I have celebrated milestones that for most go unnoticed because every single small step forward came with blood, sweat & tears. I am a mother. Do you know what it is to watch your child face prejudice & discrimination because of who she is? To see her defined by her disability, rather than her abilities? Don’t ask me to accept inclusion as you define it. I want more than large print books, ramps for wheelchairs and a day, week or month devoted to understanding special needs. I don’t diminish the value of all of these things, but it is not enough.  Give my child a place in this world. Educate her and provide her with the tools that she needs to succeed. Why must I beg for those tools? Is she not worth your investment, your resources & your time? I know that she is. I will shout it from the rooftops, from the trenches and I will suit up for the battlefield to get it for her. I am a mother and I make no apologies for that. Do not ask me to get over the injustices and do not ask me to simply accept things as they are. My answer is, “No, I will not.”  I am a mother. You ask that I politely disagree and that I wait patiently for change to happen. Would you wait if it were your child? How long would you sit quietly by? I am a mother. I can be polite and respectful, or I can bring out my inner warrior. The former is present when I sit at the table with a working partner, committed to the fight for inclusion. The latter is present when I sit across the table from one who would give my daughter far less than she deserves. The one who would deny her access & opportunity. Mother or warrior? I am both.

I see in my child a world of possibilities. Can you see it? I see the hope that she carries in her heart. Can you see it? I see all that she has been through in her 12 years of life & the courage and resilience that have taken root in her soul. Can you see it? I see her wisdom, her compassion, her humor & her beauty. Can you see it? I see her humanity & her dignity. I am a mother. I see all of these things and more when I look into her eyes & her heart. I owe it to her to ensure that when you see her, you don’t simply see autism. I owe it to her to ensure that there is a path upon which she can travel and reach her fullest potential. I owe it to her to help clear the landmines & obstacles that seek to hold her back and slow her down. I owe it to her to knock down every door that is closed in her face. I owe it to her to shed light on intolerance, prejudice & discrimination. I am a mother. I owe my child everything I’ve got. And for that, I make no apologies.

“You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil … you are the mother, advocate and protector of a child with a disability.” Lori Borgman

Autism: The Teacher

In the book of life, the answers aren’t in the back. (Charlie Brown) – Charles Schulz

Autism is not an elective class for those of us who live with it. It is sort of like those mandatory courses that you need to take in college. Given the choice, most of us in the class would have been willing to forego the lessons that are part of the autism syllabus. But, rather than sit in the back of the room, ignoring the professor and counting the minutes until class is over, I chose to sit up front. I have been in this class for almost 12 years now, though for the first 3 years I sat there without any real knowledge of autism’s place in my life. But since the day that my daughter was diagnosed, I have chosen to throw myself into the lessons that I can learn from autism. They aren’t always easy lessons to learn, in fact they are down right hard. But they are lessons that I believe have made me a better mother to all of my girls. The lessons that I have learned from autism don’t come from a book, they have been learned in the trenches through blood, sweat and tears and I am grateful for the clarity that they have given me. Here are just a few…

Lesson 1~ There is no victory too small to celebrate. I remember watching my daughter struggle to learn the very “simple” things; things that came so easily to her “typical” peers. Drinking from a cup, sipping through a straw, holding & using a pair of scissors, climbing the ladder to the top of the slide & so much more. Each small moment, each tiny step forward came with such great effort and perseverance. Each small victory, so hard-fought & won, gave us cause to celebrate… and it still does.

Lesson 2~ Patience truly is a virtue & if you don’t have any, you’ll need to find some quick. Life with autism is a series of 2 steps forward, 3 steps back. If you are constantly pushing your child to meet milestones & goals on your time frame, rather than theirs… nobody really wins. Autism means that you must meet your child where they are at, and set goals that will allow them to meet with success in their way & in their time. One of my favorite children’s books is called, “Leo the Late Bloomer.” In it, Leo the tiger is the last of his friends to learn how to do things; read, write, speak etc. His dad is constantly worrying about Leo and sees him in contrast to all of his peers. His mother, on the other hand, knows that with the right love, support & guidance, Leo will bloom in his own time & in his own way. Mom turns out to be right. And so it goes with our children. We must let go of our preconceived notions of when & how they should get to where they are going. Our job is to accompany them on the journey, give them the tools, love & support that they need to get there and then… we must let that happen in their timeframe, not ours.

Lesson 3~ Bring out your inner warrior. When you are raising a child with autism, or any special needs for that matter, you must learn how to suit up and go to battle. Sadly, with all of the resources that our country has, so little of it is devoted to helping children with autism reach their fullest potential. As a parent, I have had to fight to get the schools to provide the therapies & resources that my daughter needs. I often find myself pondering why it is that children who are born with so many obstacles to overcome, must encounter and endure even more obstacles put in place by our educational system & our insurance system. Is it because neither sees our children as worth the effort? After all, I suppose in their minds, our children will offer little to no return on their investment because of their special needs… so why bother? Autism has taught me that while I am not a person who seeks out or welcomes confrontation, there is no room for passivity when it comes to my kid. No, she needs a squeaky wheel for a mom and when the squeaking isn’t enough, she needs to raise my voice loudly on her behalf… win or lose, I will go as many rounds as she needs me to.

Lesson 4~ Accept & celebrate your child for who she is, not who you want her to be. When I think about my daughter, there is a certain Billy Joel song that comes to mind. You know the lyrics… “Don’t go changing to try to please me, you never let me down before. I love you just the way you are.” We all go through a sort of mourning process when we find out that our child has autism. It is not only a normal reaction, but a healthy one. We go through the denial, the anger, the bargaining & the grief. But, it is that last & final stage of the mourning process that we must get to and that is, acceptance. If we get stuck in the denial or the anger, spend our days bargaining with God or grieving, we will miss out on the many blessings that our child can share with us. It is only in ultimately reaching that stage of acceptance, that we are free to truly love & embrace our child and experience the unique joys that they bring into our lives. Without acceptance, we will spend our days trying to change our child, or hide from the reality of their diagnosis. They will soon come to believe that they are not “enough” in our eyes and that is a burden that no child should ever have to bear.

Lesson 5~ Never say never & take things one day at a time. When my daughter was 3, and initially diagnosed as being on the spectrum, I would not have dreamed that she could be where she is today. She didn’t arrive at this place overnight. She arrived here one minute, one step, one hour, one day at a time. There is a saying that “Today is a gift, that is why it is called the present.” To live with autism, means to live in the present. To help our children find success where they are now and through that, to help them move continually forward. It means to set tangible goals without disregarding the possibilities of tomorrow. It means to not allow yesterday’s setbacks to defy tomorrow’s hopes. And that is just another of the lessons that autism has taught me.

What has autism taught you?

Sometimes Failure is an Option

“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” (Elizabeth Stone)

Every parent wants the best for their child. We want to see our children happy. We want them to know great joy & guard them from sorrow. We want them to find success & shield them from failure. We want them to be met with love & acceptance and protect them from hate & intolerance. We want to ease their burdens & smooth the paths that lie ahead. We ache when we see our children struggle with heartbreak & hurt. To see your child vulnerable to life’s disappointments, heartaches & setbacks is so very hard. When you have a child with special needs, that sense of their vulnerability is magnified. Knowing that the challenges they face in life are even greater, only doubles your heartache.

But what would happen if our children never knew adversity? If they never experienced failure or heartache? If we could shield them from all of the bad, and let them only experience the good? Would that truly be the best gift that we could bestow upon our children?

In his book, The Wisdom of Sam, Daniel Gottlieb says, “… all children need from their parents (is): the faith that they can endure adversity. When a child does not have a parent’s faith, he experiences the parent’s anxiety. And in time, that child comes to experience himself as fragile in the face of a difficult world. As a result, he never gets a chance to toughen up.” Gottlieb goes on to say, “I don’t know about you, but all of the wisdom I’ve acquired has come from adversity, pain, suffering, loss & some really stupid decisions. All of these things have, at times, caused me great suffering. I have learned that every time I suffer, I recover. And over time, that knowledge has turned to faith. Now I have the faith that when I face adversity, somehow I’ll be okay.  It might not be the outcome I would prefer, but I have faith that I will come to be okay with what is. Life will toughen us up. Faith will open our hearts.”

When it comes to my children, I often describe myself as a Mama Bear. I am fiercely protective of my cubs. But if I am being honest, Yael’s autism only magnifies that protective instinct. I do see her as more vulnerable in this world and I worry every day about what her future holds. It is harder for me to have faith in her ability to recover from life’s setbacks. It is harder for me to watch her stumble & fall. It is harder for me to see her struggle with rejection & intolerance. Autism feels like a great burden to bear at times and my instinct is to try to carry that load myself. But I don’t. You see, I know that everything I just shared, well that is “my stuff.” Those anxieties & fears belong to me and not her.

The greatest gift that I can give to Yael, and to her sisters, is the faith that they can get through the hard times. For that to happen, I must step back and let them live life, stumble, fall down & get back up. I need to understand that my role is not always to protect them from life’s pain, but to let them know that they will not have to endure it alone. I need to show them that sometimes failure is an option because it is often our failures that teach us the greatest lessons.   

My heart... my girls

Autism will make life harder for Yael. That is a fact. But within my daughter I have seen a resilience & courage that only continues to grow. I must nurture her faith in that resilience. Each time I let her meet life on her own terms, I nurture it. Each time I let her try something new & risk faltering, I nurture it. Each time I listen to her problems & help her to find the solution for herself, I nurture it. Each time that I believe in her, I nurture it. Each time that I push back my own fears, so that she can reach for her dreams, I nurture it. And that is the greatest gift that I can give to her as she journeys through her life on the spectrum.

Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved. (Helen Keller)

 

To learn more about the book, “The Wisdom of Sam” by Daniel Gottlieb click this link. http://www.youtube.com/watch?v=_V4QrekU1Wk