When a Month Just Isn’t Enough

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

Faith has always been an integral part of our family life. From the time our children were very young, we shared with them the traditions and beliefs that were a part of their Jewish heritage. As we read books about letters & numbers, shapes & colors, we also read stories about God. And just as we sang the familiar songs of childhood, so too did we end each day with the Shema. Even their names connect them to their Judaism. They were not given an English and a Hebrew name, but only a Hebrew name. Faith has never been a separate piece of our lives, reserved for synagogue or holidays. It is woven throughout the tapestry of our days, a piece that is inherently and intimately bound to all other pieces.

When Yael was diagnosed with autism, faith carried us through those early days of fear and angst. It continued to accompany us into a place of acceptance, strength and hope. Yael has always loved being Jewish. She embraces her faith with incredible ease. I am often mystified by that. Autism means that she sees the world through such a literal lens, yet faith and God are anything but that. She loves to study Torah with her father, and when she sings at synagogue she does so with such feeling and an obvious sense of connection to the prayers and their meaning.

When Yael was a very little girl, she stood in front of the mirror one day. It was an ordinary occurrence, the mirror seemed to be one of her favorite places to play. Her reflection made for a wonderful & entertaining playmate. At the time, though she had a fair amount of words, she  tended to use more babble when she spoke. But, on this day, as she stood playing with her reflection she spoke her first complete sentence. Three words that have stayed with me until this day, “I see God.”  My husband says that there is a Jewish teaching, that very young children are able to see angels – messengers of God.  I believe that on that day, that is what Yael saw as she looked in the mirror. B’tzelem Elohim, she is created in the image of God and the divine spark lives within her.

Every day for Yael and for our family, we live with “Jewish Disability Awareness.”  Neither faith, nor autism, touch our lives for only one month of the year. It is a daily theme as we navigate life on the autism spectrum, as it is for so many families. It is with great pride that Yael will talk of her Judaism and her autism, and both have surely played a role in shaping the incredible young lady that she is today. They are intrinsically bound with Yael’s sense of self and each inhabits a piece of her soul.

Judaism and the awareness of those who live with disabilities and challenges, should not exist as separate entities. It is not enough to bring them together for one month out of the year. I have heard from so many parents over the years about how isolated they feel. Those who most want to embrace their faith, who are often in the most need of spiritual comfort, often find those gateways inaccessible.  And even when they are able to find a way inside, they often stand on the periphery, never truly feeling that they are a part of their Jewish community. They stand ready to make a quick exit the moment their child’s disability becomes “disruptive” to others and often, over time, they simply stop trying to return. In Pirkei Avot 2:5, we are taught “Do not separate yourself from the community.” But to feel that you don’t fit within your faith, that there is no room for you or your child, creates a profound sense of loneliness and loss. And, I believe that our Jewish community becomes weaker every time another family is asked to simply accept that loss.

I recognize and respect the value in teaching about acceptance and diversity during Jewish Disability Awareness Month. I am grateful that the seeds of  awareness and understanding are being planted in Jewish communities around the country. But it is not enough. To truly nurture the souls of those living with disabilities, we must begin to embody the Jewish values of inclusion each and every day. We must model it for our children and make it an inherent part of Jewish education. We must challenge ourselves to create a safe place for people with disabilities and their families, to worship and participate in our Jewish communal life. We must treat those living with disabilities not simply as guests who are welcomed once in a while, but as important members of our community, with something of value to contribute.

Yael’s understanding of her faith continues to grow, as does her understanding of her autism. Both will continue to play a role in her life each and every day. Autism will surely bring with it new challenges and obstacles, and her Jewish faith will just as surely help her find the strength and courage to persevere. Life on the spectrum will not be easy to navigate. Life with a disability never is. But faith can be a compass on that journey. And we owe it to all of those living with disabilities and challenges, to give them access to that compass. So that when they want to find their way to their spiritual home, their Jewish community will be waiting to embrace them with open arms. For, as it says in Isaiah 56:5: “My house shall be a house of prayer for all people.”

Ben Azzai taught: Do not disdain any person; do not underrate the importance of anything – for there is no person who does not have his hour and there is no thing without its place in the sun. (Pirkei Avot 4:3)

Feathers in the Wind

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

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

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

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

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

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

 

Life is Like a Box of Chocolates

 ”Life is like a box of chocolates. You never know what you’re gonna get.”  (Forrest Gump)

I have a sweet tooth and I am a lover of all things chocolate. As a matter of fact, chocolate brown is even my favorite color.  I have a sign that hangs in my kitchen that says, “Life is not worth living if you do not have chocolate.” For better or for worse, I have passed that philosophy on to my daughters. Chocolate has medicinal qualities in our house when someone is having a bad day. And, it is the perfect way to celebrate the sweetest moments that life has to bring. The cupboards are never without some type of chocolate confection. We enjoy them in moderation, and every now and again with gluttonous indulgence.

If life is truly like a box of chocolates, than life on the spectrum offers its own unique variety of flavors. Some are worth savoring, and others you simply have to choke down, and then there are those flavors that fall somewhere in the middle. The featured flavors change from day to day when you journey on the spectrum. It’s only after you take that first bite, that you truly know what you’re in for.  So I offer up this chocolate sampling to you; a box that contains the many flavors that I have tasted along the way.

Dark &  Bittersweet ~ I think the name pretty much says it all. It may be hard to find the sweet notes in such a bold, dark flavor. But if you let it linger on your palate long enough, those hints of sweetness will come through. You just have to be patient.

Silky Smooth Milk Chocolate~ The sweetest of flavors found on the spectrum, you’ll want to savor and indulge in this one. It may not be featured as often as you’d like, but just a small tasting every now and again, will truly fill you up.

Chock Full of Nuts~ When life on the spectrum leaves you feeling all cracked up & a little nutty.

Caramel~ When autism brings with it a whole lot of ooey gooey sticky situations that leave you feeling like a hot mess when all is said & done.

Rocky Road~Yeah, this one’s pretty self-explanatory.

Unsweetened~The darkest & most bitter of all the flavors, when you can’t seem to find a single moment of sweetness to savor in your day. When eating this flavor, it is best to swallow it down, go straight to bed & pull the covers over your head. Tomorrow is a new day & a new flavor awaits.

Coconut~ One bite of this and you’ll be ready for those moments when you must simply grit your teeth and bear what life on the spectrum brings your way.

Espresso ~ The flavor that will leave you feeling rejuvenated, with an extra surge of energy. After you’ve eaten one of these, you’re ready to tackle anything that autism brings your way. Be mindful however~ if you eat too many of these, you’ll find yourself lying awake at night with visions of autism dancing in your head, and that is never a good thing.

Mint~A cool & refreshing flavor. To maximize the experience, just close your eyes, take a bite, breathe in, breathe out and repeat.

Cayenne~ These have a little kick to them. Where they kick you and how hard, you won’t know until you take that first bite. The kick may slow you down or it may be just what you need to keep on going forward.

Chocolate Covered Pretzel~The perfect blend of sweet & salty, when life on the spectrum makes you laugh a little & cry a little.

Chocolate Covered Banana~ The flavor you crave when you are about to go apes#%it on somebody for messing with your kid! Come on now, don’t pretend you don’t know what I’m talking about here, cause I know you do!

Chocolate Stout & Bourbon Balls~ Okay, come on now, do you really need any further explanation of these?! For those days when liquor or chocolate alone simply won’t do…

Chocolate Rice Krispie Treats~ The “go to” treat for those days when you’ve taken on the schools, the insurance companies or some well meaning, but insensitive & ignorant human being and you truly feel like you’re going to “snap, crackle & pop.”

Chocolate Covered Marshmallow~ For all the moments when you have to put on a hard outer shell to go and advocate for your child, but inside you are truly just a mush at heart trying to do right by your kid.

Chocolate Kisses~ Little bundles of sweet goodness all wrapped up in a pretty little package. Just to remind you how much love you have in your life. They even come with hugs now too!

If you don’t see your own flavors featured in this box, feel free to add your suggestions. The selection is always changing and we are always encountering new & interesting flavors here on the spectrum.

All you really need is love, but a little chocolate now and then doesn’t hurt (Lucy Van Pelt from The Peanuts)

Dear Puberty: A Flustered Mother’s Attempt at Persuasive Letter Writing

 

Dear Puberty,

My 12 year old daughter, Leora, had to write a persuasive letter this week at school. I have no doubt that she was able to singlehandedly save Modern Family from its theoretical doom, by persuading the president of the network not to cancel the show.  Whew! Good to know that in the face of major cultural challenges, the writing apple doesn’t fall too far from the maternal tree. If I can’t take full credit for her straight A’s and her place on the Principal’s Honor Roll, I can at least take credit for that. So, inspired by my middle child, I thought I’d take a crack at writing my own persuasive letter. Since you, Puberty, have been making my life increasingly difficult these days, I thought I’d try to get you to see things my way.

As you already know, Puberty, the last few months with Yael have been particularly exhausting & exasperating. As if our good friend Autism didn’t already make life interesting enough, along you come and with your hormones, outbursts, outbreaks and mood swings, life on the spectrum has suddenly become a whole lot trickier.  As if it wasn’t hard enough for my daughter to understand, process and identify her emotions, along you come with your hormonal surges and she finds herself crying over nothing at all, or becoming easily agitated and angry over the littlest things. Add to that the fact that she feels overwhelmed by all of the things she is now required to do in order to put herself together, and the stress level between mother & daughter reaches new highs (or lows depending on your perspective).  

We’ve gone from simply showering, brushing teeth and brushing hair, to a whole slew of self-care responsibilities that Yael finds it increasingly difficult to manage. In case you didn’t realize it, my daughter struggles with intuitive thinking.  It’s not her fault.  Simply put, it’s just not how the autistic brain is wired. Yael can’t read situations, and she struggles to read people. So it’s not her fault that she doesn’t inherently understand the importance of her new teenage cleaning & care regiment. It’s my job as her mother to help her.

Yael struggles with her executive functioning skills as well, Puberty. It’s written up in her psychoeducational evaluation, which you should really take the time to read when you have a few minutes. So, up goes the list that we created together. Yes, in order to help her get organized and plan out all that she needs to do, she has a checklist. She refers to it each day to help her organize herself and her responsibilities. It’s got a schedule for tweezing, shaving, acne medication, washing her face, how to fix her hair and every little detail in between. It’s even broken down into AM & PM. Okay, so here’s the thing Puberty… whose job is it to help ensure that she does all of these things? Who is the one that has to point it out to her when it is clear that she isn’t staying on top of that list?  Who has to keep trying to explain to her why any of it matters in the first place? That’s right Puberty, it’s me. I’m not only mom, advocate and life coach, now I am the enforcer. Not, I repeat, not, a role that I am relishing.

So, why can’t you make life a little easier on this haggard and tired mom? I mean, would it be so bad if you dialed down the skin issues, so that once in a while it wouldn’t matter if she skipped the astringent or skin meds at the end of a long day? Can we temper the monthly mood swings? It’s too much for her Puberty. Sometimes it feels like you and Autism get bored, so just for fun you decide to join forces and out of nowhere you just blindside my kid.  Really Puberty?! Really?!  In my book, a girl who shares her life with Autism has enough on her plate. Life on the spectrum is tough enough for her, and me, to navigate some days. Now you plant your little landmines all over the place, and I’m left to clean up every unanticipated explosion.

So here’s my proposal, Puberty. I’m not saying that you’re not welcome to be in my daughter’s life. I get the value and beauty that you bring. I understand nature’s progression from girlhood into womanhood. I explain all of that to Yael, though I’m fairly certain it does little to comfort her. I’m just saying that, quite honestly, you haven’t been a very thoughtful visitor. A little sensitivity training might be in order when you come at a kid with special needs. Maybe you could be a lot less forthright in your appearance, and bring a little more subtlety to your approach. Stop going so hard at the skin, the hair, the emotional swings. Be a little more gentle, a little more kind. I know it’s not generally in your nature, but try anyway. My daughter is only 13, we’ve got a long way to go before we part ways with you. So, while we’re together, let’s try to reach an understanding. I’ll do my part Puberty. I’ll coach my daughter, help her to get organized, teach her all that she needs to know to care for herself and help ensure that she is as independent as possible. But you’ve gotta cut me some slack, Puberty. We’re in new territory here and I feel like I am learning by the seat of my pants. And recently, the seat of my pants is feeling kind of whooped.

So here it is, my closing argument. Here is where I drive home my point and leave you feeling persuaded. I’m going to break it down into plain and simple terms for you, Puberty. You see, sometimes what I miss most  is just being able to be “mom.” Autism demands SO much more of me. The truth is that some days, I don’t have a whole lot left over. That means my patience runs thin, my temper runs high and I feel like running away.  I  have two other beautiful children & a husband who need me. I have a job and responsibilities. I do the best I can Puberty, but to be honest, you are making my days a lot more stressful. My daughter said that she thinks we’re “having  a hard time in our relationship” because of you, and I have to agree with her. 

So please Puberty, I hope you’ll consider my arguments &  just dial it down.  Back off of my kid a little bit and don’t be so damn hard on her, and on me. Remember that Autism is always around, and it might be nice if y’all coordinated a little more thoughtfully, so that my kid doesn’t  feel like you are tag teaming her all the time.  Give me a chance to just be a mom, and give her a little less to carry on her plate. It’s not a lot to ask of you, Puberty. And now, if you’ll excuse me, I am off to go drown my frustrations in a whole lot of chocolate.

Sincerely yours,

Deborah Greene

P.S. I am going to ”cc” Autism on this letter, just to be sure we’re all on the same page.

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)

 

 

The Face of Autism

In the right light, at the right time, everything is extraordinary.  (Aaron Rose)

It happens often. People meet Yael for a short while and later remark to me that had they not been told, they would never have known that my daughter has autism. My general response is that if they spend some more time around her, they would begin to notice some “quirks.”  If they spend time with her amidst a nerurotypical group of her peers, the social & emotional disparities would become more readily apparent. They might not be able to put their finger on it, but they would surely notice something “different” about her. Would they immediately identify that difference as autism? Well I suppose that answer varies with their exposure to and experience with autistic people.

At other times, people have shared their observations in a more blunt manner.  “Wow! Your daughter doesn’t look autistic.”  I am never really sure what they expect me to say in response to that particular statement. I suppose they are  intending it as a compliment of sorts, or perhaps they think we got the diagnosis wrong.  And while I recognize that there is no malicious intent to their words, I do not in fact find them to be complimentary, and rest assured she hasn’t been misdiagnosed. Rather, I often find myself wanting to respond to blanket statements such as this by asking a very simple question. “What exactly does autism look like?”

Then there are those who, knowing that I am raising a child with autism, come to me and ask me to assess, with little more than a cursory introduction, whether somebody else might be autistic. The implication is that because of my experiences parenting Yael, I must have a built-in radar that allows me to immediately identify all other autistic children.

There is a saying in the autism community that, “If you’ve met one person with autism, you’ve met one person with autism.” It is so true. The spectrum is long and wide, and the people with autism spectrum disorders are as unique & different as any one of us. The word “spectrum” itself  is defined as “a continuous sequence or range.”  Depending on where they fall on the spectrum, people may share certain characteristics & symptoms, that is true. But they are no more carbon copies of one another than you and I. My three daughters live in the same house, come from the same biological parents, and have been raised in pretty much the same manner. They share the same genes, the same last name and the same family tree. That does not make them exact replicas of one another. Far from it in fact. The same can and should be said of people who live on the spectrum.

I know that when people tell me that my daughter doesn’t “look autistic”, they are conjuring up the images they have seen on television or in the movies. They imagine those who are most severely impaired, non-verbal, in a continuous state of stimming (rocking, flapping, spinning) and unable to make eye contact. They think of Dustin Hoffman in Rain Man and look for savant qualities. The image they see in front of them when they look at my daughter, doesn’t fit the cookie cutter image of autism that society has trained them to see. But, even those who fit that image, who possess most of those very characteristics, also possess features and qualities that make them different, special & unique as human beings and as people with autism.

Autism does not have a single face. It’s characteristics are as long & as wide as the spectrum implies. You can’t look at a human being and immediately assess whether they do or do not have autism. The understanding of autism spectrum disorders is growing, and the perceptions that we have as a society, must grow along with them.

Over 300 years ago, Sir Isaac Newton discovered that the sun’s light is actually made up of many different colors. Those colors are not apparent to the naked eye. We see only the sun’s white light. But when that same light is viewed through a prism, we find the uniquely beautiful “spectrum” of colors that make a rainbow. Those who live their lives on the autism spectrum, can not & should not be viewed through only a single type of lens, one that shows them solely in shades of black & white. Instead, we need to see autistic people through a prism, a view that allows us to separate a single defining view of autism, into a myriad of beautiful & unique individuals.

My daughter doesn’t look autistic, that is true.  Perhaps that is because nobody can ever really know the one and only face of autism. It simply does not exist.

Reflections of the Birthday Girl

Life can only be understood backwards, but it must be lived forwards.
(Soren Kierkegaard)

Tomorrow, I will celebrate my 43rd birthday.  I was 33 when Yael was diagnosed with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) and our family’s life on the spectrum began. That means that I have lived a decade of my life with autism as a constant family companion.

So, what have I learned in that decade?  Well, to begin with, I have learned the importance of good hair dye and a great hair stylist.  Yes, that’s right, believe me when I say that I am fairly certain that life with autism caused me to go prematurely gray. Investing in a good wrinkle cream ain’t a bad idea either!

I have learned that I am far stronger than I ever gave myself credit for. There is a warrior inside of me, always ready to go to battle for my daughter. You wouldn’t know it from the outside, but she’s there.  I have adopted the good manners & pleasant demeanor of the south, but I can get my tough New York attitude on when life requires it! 

I have learned that laughter really is the best medicine.  Life on the spectrum will fill your days with many unexpected twists and turns. You’ve got to fight the inclination to get caught up in road rage, and try to find some humor in the ride. If not, you’ll crash and burn! And nobody wants to see that happen!

I have learned that the big picture is too big for me to grasp. It overwhelms me.  I take each day, week, month and year as it comes. I don’t know how far my daughter will go, but I can see how far she’s come.  Progress on the spectrum must be measured in baby steps, but as the saying goes, “A journey of a thousand miles begins with a single step.” And for every step forward that my daughter takes, autism will surely create some new obstacle down the road that will lead her to take a step back. That’s okay… we have a GPS, and we’ll find another route to get her where she needs to go.

I have learned that patience is not always a virtue I possess, and that I need to work on digging deeper into those reserves, even when time is short and energy levels are low.  Autism can demand a lot of attention at times, but my daughter’s feelings and sense of self deserve even more. I’m going to keep working on that one.

I have learned that you can’t take this journey alone. You need to surround yourself with the love of family and friends. They may not live on spectrum, but you can help them to know, understand and accept your world. And if along the way, you meet people who can’t offer you that unconditional support, you need to part ways and move on. There is no room for judgement on the spectrum. As Kenny Rogers said, “You got to know when to hold ‘em, know when to fold ‘em, know when to walk away and know when to run.”

I have learned that our educational system has a very long way to go in leaving no child behind. It continues to anger, sadden and frustrate me, that I have to fight so damn hard to make our society see my child as worth investing in. She is as full of love, life and potential as any other kid and deserves to be treated as such. I could rant on and on about this particular topic, but I won’t. Suffice it to say, I have learned that advocating for my daughter is a full-time job and there are very few vacation or sick days in the job description. It’s also a position with no formal training and no instruction manual! It’s called learning by the seat of your pants, so be sure to buckle up.

I have learned that stupidity & ignorance can show itself at any time in any place. Somebody will be there to offer unsolicited advice or judgement, telling you all of the things you are doing wrong as a parent.  Try to hold your head up high and answer that stupidity with dignity, pride and self-respect.  And if, on occasion, you need to give stupidity and ignorance a bit of a tongue lashing, well, I’ve been there and I totally get it.

I have learned that we are all entitled to a good meltdown now and again. It can be tiring trying to navigate through life on the spectrum. You make a lot of wrong turns, run into dead ends, need to back up and find another route. Every now and again you’ve got to cry that ugly cry, indulge in a boatload of chocolate, grab a night out with your hubby, your friends or both. If you don’t take care of yourself, you’ll never make it through the journey.

I have learned that I can’t parent all three of my daughters in the same way, and that sometimes Yael needs more than her sisters do. It isn’t always fair, I get that! But, I love all of my children with equal measure and even if I can’t always dole out equal amounts of time and energy, it doesn’t change that fundamental fact.  I am only human, and there is only one of me, so I have to be more forgiving of myself when the slices of pie don’t always measure up (or when that pie has to be store-bought, instead of homemade).  It won’t always be Yael that gets the largest piece, that’s simply not how life works. I need to make sure all of my girls know that.

I have learned that George Michael was right when he said, “You’ve got to have faith.”  Autism is a maze, and it isn’t always easy to find your way, in fact at times it is downright hard. My faith continues to be my compass and, no matter how lost I feel, it somehow guides me back home.

I have learned that motherhood is unpredictable, even without a special needs child.  Autism was never part of my plan, but it is part of my reality. So, I can choose to get caught up in the fantasy of the life I dreamed of, or embrace my reality and live it to its fullest potential. I choose the latter.

I have learned that I don’t give a crap what label my daughter has to be given, nor do I care what other people think of that label. Autism is not a dirty word. “My daughter is autistic!”  There, I said it. So what?!  I’ll shout it from the rooftops too. She is also funny, kind, compassionate, sensitive, smart, brave, generous and beautiful. As a matter of fact, on this, the day before my 43rd birthday, let me proclaim that when I grow up, I only hope that I can be half the human being that she is. If I can measure up to that, than I am doing just fine.

“Don’t go through life, grow through life.’ (Eric Butterworth)

 

 

Inside and Out

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so weave a less arbitrary social fabric, one in which each diverse human gift will find a fitting place. ” (Margaret Mead)

Autism is known as an “invisible disability.” That means that it is not a “disability” or condition that is immediately apparent to others. Sometimes, when I glance at my daughter, it is easy to forget that she has autism. There are, after all, no physical symptoms or attributes that would immediately identify her as being autistic. Instead, I see a girl who is growing into a young woman. As she enters her teenage years, her body is changing, maturing and developing.  She is almost my height, and is far from that little girl who was diagnosed with autism at age three. But, what is happening on the outside, does not always reflect what is happening on the inside.

Inside, my daughter retains a certain innocence, more consistent with her younger years.  Her interests, though evolving, are often not on par with girls of the same age. The distinctive levels of sarcasm, so apparent in many teenage girls, isn’t present. Instead, she still speaks with the more lilting tones of a child. I watch as her sister, only fourteen months younger, surpasses her in social and emotional development.  It is a bittersweet thing to witness that dynamic, though I don’t think that Yael notices. At least I hope that she doesn’t.

These days, in addition to being my daughter’s advocate, I find myself playing the role of adolescent coach, trying to help my daughter manuever through and understand, the physical and emotional changes that come with puberty. She is always a good student, eager to please. But it is hard to try to teach the things that simply don’t come naturally to her . Why must she now take the time to look in the mirror each morning before she goes out?  Why must she pay attention to things like shaving, tweezing or how her hair looks? Why does it matter, when she sits down at the table, how slowly she eats, how she sits, or how often she uses a napkin to wipe her face? Why must she try to use a more grown up voice when she speaks to others? These things didn’t seem to matter as much before. Suddenly, puberty brings on a whole new set of  social expectations? Why do these things matter now? And how do you work to make the inside development, just a little bit more consistent with the outside?

I have shared with Yael that as she gets older, she will have to think about how she presents herself to the world?  Taking that time to look in the mirror and put herself neatly together, is thinking about how she wants others to see her. Part of sitting at the table, sitting up straight and pausing as she eats, is about engaging others in the social act of eating, and once again being mindful of how she presents herself to others. Trying to speak with the tone of a young woman & not a child, is about having people take her & her ideas more seriously. She gets it. She is a good student, but it is not intrinsic to her. Left to her own devices, these things would not matter as much. I get that. Sometimes I wish they didn’t matter either. It would certainly make her life with autism, a much easier one. We can not expect that she will wake up one morning and inherently understand the social and behavioral norms that she is trying to follow, instead we practice and role play, teaching her & training her to be aware of these societal expectations, much like one would train an athlete.

Sometimes, playing the role of coach means that I go to bed at night, feeling as if I haven’t been a very good mother. The last thing I want is for my child to feel as if she is always being corrected, redirected or asked to do things differently. Her initial response to our social skills lesson, is often to apologize, believing that how she has acted on her own is somehow wrong. It is not wrong, and I tell her that. But it is not what society will ask of her. I try to pick and choose the things that matter most, and at other times I simply make the decision to let things go and leave her be. I refer to all of this as trying to dull the edges that autism sometimes creates. I do not wish to change who she is inherently, but I must wear down those edges enough to allow her to try to fit and function in a world that is going to expect certain things of her. When she wants to meet a boy and wants to date, when she wants to try to get a job, when she enters new social situations and wants to make friends, these things will matter. I wish it didn’t have to be so, but that is the world in which she will have to live. A world in which people will look at her and see what I see on the outside, but who may not take the time to recognize and respect the invisible disability that lies within.

On the outside, she is on the cusp of womanhood, but on the inside she is just a girl, trying to navigate the social, emotional norms that all teenage girls do. But her journey isn’t always as clear. Autism makes it harder to navigate through all of these changes that she is facing. Puberty is hard under the best of circumstances, but autism surely makes it more complicated. I pray that I can balance guiding her and allowing her to carve out her own path, helping her to fit in and find her place, yet celebrate all of the unique qualities that make her so special. I want her to march to the beat of her own drummer, yet be in harmony with the world in which she must live. Somedays I get it right, and others, I am sure I miss by a long shot. I just want to help ensure that we can dull the edges of autism enough, so that others will take the time to get to know all the gifts that my beautiful daughter possesses just beneath the surface.

“When you think about it, not all characteristics exhibited by typical people are worthy of being modeled. A much more meaningful perspective is to teach this population the academic and interpersonal skills they need to be functional in the world and to use their talents to the best of their ability.” (Temple Grandin, from the book, “The Way I See It: A Personal Look at Autism & Asperger’s)

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)