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)

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)

Challenges

Do not pray for an easy life, pray for the strength to endure a difficult one ~ (Bruce Lee)

I’ve spent a good part of this past week getting my life organized. The coupons have been cut & filed, the expired ones thrown away. The laundry is done & the school supply lists are printed out and ready to go. But my most significant mission was to put together the “Master Calendar” for the school year. On this giant calendar, I have entered important work days & school days. I marked the half days & the days off, the open houses & the school sneak-a-peeks. Amidst all of these dates and times, I noticed that next week I’ll be taking my 8-year-old daughter to the pediatric cardiologist the day after I take my husband for his MRI.

Let’s start with my husband’s appointment. It’s been almost 1 year since Fred was diagnosed with Multiple Sclerosis. It started with his vision becoming clouded & dark in one eye. Each day got progressively worse and he went from the internist, to the ophthalmologist & on to the neuro opthalmologist . An MRI revealed 5 lesions on his brain and the diagnosis was given. I remember that moment so clearly. The doctor, lacking any real warmth or bedside manner, delivered the news and sent us home with thick packets of information that we could use to choose a medical course of action. First came the massive doses of IV steroids to stop the swelling of the optic nerve. I would liken Fred’s experience with that to Prednisone on steroids. It was a  week of IV drips, sitting 45 minutes at the dining room table, hooked up to a line and being tended to by me, nurse Deborah. The effects on his body from such massive doses of steroids lasted for weeks and seemed to leave him feeling worse & not better. It was hard to watch my husband struggling, to feel so powerless to make things better. But every day he got up, put his brave face on and went to work. He wore a patch over his left eye and was lovingly referred to as “The Pirate Rabbi.” He eloquently & thoughtfully shared his diagnosis with the congregation and his honesty was met with overwhelming love and support. In time, his eye healed and the symptoms of the steroids subsided. MS became yet another diagnosis that our family learned to live with, and in time, even laugh at. But there were many tears shed, and a good amount of them were mine. I felt as if life had once again kicked my family in the ass. “It’s enough!” I remember saying over & over as I cried on the phone with my friends. After all, we had lived with Yael’s diagnosis of autism and all of the challenges that come with that. That alone would cause most families to cry “uncle” to the universe. But our challenges hadn’t ended there.

When our youngest daughter Noa was only 3 1/2 weeks old, she endured a 7 hour open heart surgery at Yale University Hospital in Connecticut. This had not been an easy pregnancy. The doctors noticed at 18 weeks that she wasn’t growing properly. I endured ultrasounds every other week and non-stress tests on the weeks in between. Every week I went in to the doctor’s office knowing that if Noa wasn’t growing, they would have to deliver her prematurely. And every week that I left with her still safely tucked away in my tummy, I would cry tears of relief. When she was delivered at full term, it was by cesarean section. She was a “Frank Breech” which is basically when the baby’s  tush is down toward the birth canal and the legs stick straight up in front of the body, with the feet near the head. She was what they call a low birth weight baby at only 4  lbs. 15 oz.  My relief at having delivered her safely, was soon replaced with worry. She slept all of the time and it was incredibly difficult to rouse her for bottles. I was told not to worry, that it was common for such small babies to sleep more in the beginning & as long as she was eating something, there was no need to be alarmed. But that voice inside of my head just kept getting louder and telling me something wasn’t right.  On the day of discharge, the pediatrician on call came in to examine Noa and told us he heard a murmur. Though on the surface he didn’t appear alarmed, that voice inside of my head got even louder. The next day our own pediatrician confirmed the murmur and sent us to a pediatric cardiologist. He said that 90% of the time these murmurs are benign, but I knew in my gut that we would fall into that other 10%, and so we did. At 3 1/2 weeks Noa was in full-blown congestive heart failure. Our efforts to fatten her up and get her stronger for the surgery were not working. She was down to 4 lbs 11 oz. and it was time to act. That moment when I handed my daughter over to the anesthesiologist is forever seared into my mind. I was, quite literally, putting her life into the doctor’s hands. I walked out of the door and fell to my knees sobbing. For 7 hours my baby was on that table and when we finally got to see her in the PICU, her feet were the only part of her that didn’t have bandages, tubes or blood. She was on a ventilator, laying in an adult size bed, hooked up to wires and that image too is indelibly scratched into my brain. She came home a week later and through the winter months we nursed her back to strength. By the spring she was a chubby little baby, off of the meds and growing each & every day. The scar on her chest a permanent reminder of what she and we had endured.

So next week I’ll take my husband for his MRI and I’ll be saying many silent prayers as I sit in there with him, holding his hand. I’ll pray that the nightly shots he endures are working. I’ll pray that there are no new lesions and that, at least for now, we have kept MS at bay.  And the next day, I’ll take Noa to the cardiologist and pray for a “routine” examination. Twice now she has given us real scares, the doctors finding cause for concern. Twice now we have faced the possibility of another open heart surgery for her, agonizing over the mere thought of it and, thank goodness, twice now there have been reprieves.

Still, I never walk into these appointments nonchalantly. Three times now, our life has turned on a dime. When that happens, you learn never to take things for granted. First Yael’s diagnosis of Autism, than Noa’s Congenital Heart Defects & I pray that last, though certainly not least,  Fred’s MS. People tell me all of the time how strong I am. They look at what our family has endured and they marvel at how we do it. They tell me I’m strong~but I don’t feel strong. They tell me I’m brave~but I don’t feel brave. If I am being honest, I do feel at times like the universe should pick on somebody else for a while. But then I find myself reflecting on a saying I once heard.  ”Don’t compare your life to others’. You have no idea what their journey is all about.” In other words, “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.”  (Regina Brett) So, my family’s challenges are our own. Some days they suck and at times they are overwhelming. Some days they cast a shadow of fear & anxiety and some days still, many tears are shed. But most days our challenges exist in the background of our most ordinary days. They are woven into the fabric of our family quilt, but they are not what is most prominent. There are physical scars and emotional ones too. But they are overshadowed by the healing that has taken place over the last months & years. We make jokes about our circumstances because laughter really is good medicine. We focus on our blessings and we are grateful to live in a time when Autism, Congenital Heart Defects & Multiple Sclerosis can be helped through the advances in medicine & education. We’ve searched for a lot of rainbows on the darkest of days, just to offer a glimmer of hope; and we’ve found it in the love & support of those we hold dear. We have found it in the prayers of strangers, the hands of physicians & the unwavering commitment & care of friends and family. But most of all,  the five of us, me, Fred & our girls… have found it in each other. 

So, the “Master Calendar” holds the reminders for next week. Two appointments. Two of the challenges we have faced. Two reasons to reflect on the fragility of life & the resilience of the body and the human spirit.  And two reasons to be grateful that Leora, our middle daughter, only needs a new set of glasses

 ”Life isn’t about how you survived the storm … it’s about how you danced in the rain.” (Regina Brett)