Archive for the ‘Autism’ Category
Alone we can do so little; together we can do so much (Helen Keller)
I’m all registered and ready to reunite our team for the 2012 Georgia Walk for Autism. Our team name, “The YaYa’s” is inspired by Yael’s nickname, given to her when she was only days old.
Every year I look forward to the walk. Some might wonder why that is. I’ll tell you…
First, the walk reminds me that there is strength in numbers. Looking out at a sea of people, numbering in the thousands, reminds me that our family is far from alone on this journey. The collective strength of the families, friends, educators & professionals that walk, demonstrates that we truly are a force to be reckoned with. Sometimes it’s easy to lose sight of that when you are immersed in the trenches day to day. Truth is, we’re all part of something much bigger than ourselves & our own families.
Second, some might expect that an event like the walk would be filled with melancholy people full of sadness and a sense of defeat. Perhaps they envision a large group of self-professed victims, sitting around holding a gigantic pity party. That could not be further from the truth. The feeling of hope, pride and unconditional love and support is palpable. T-shirts profess team pride, often championing a single child or loved one who lives with autism. Phrases like, “Autistic Kids Rock” or “I am not a Tragedy” tell the world that though we want answers and a greater understanding of autism, we sure as hell don’t want to be pitied or appeased. We are proud mothers, fathers, sisters, brothers, friends & family of incredibly unique and amazing human beings who happen to have autism. Some may walk for a cure, others to raise money for advocacy, research & intervention, and still others walk simply because they want to stand up and be counted. And when we walk, it is with our heads held high, our chins up and our hearts full.
Third, from the moment that we step into the area where the walk is held, Yael can look around and see kids just like her. So much of her life she lives in the minority. One of the few kids in her school, at her synagogue, in her neighborhood or at her camp, who has autism. But at the walk, it is the total opposite. She sees younger kids, older kids & adults, all living with autism. She gains a greater understanding of the spectrum upon which she lives and gets to meet some of the neighbors who live there with her. It may not sound like much, but to her it is one of the rare & precious moments where she gets to feel as if she truly fits.
Fourth, let’s be honest. It is easy to feel drained as the parent of a child with autism. There is so much to do from advocacy to therapy, helping your child develop social skills and so much more. Sometimes I feel like I am running on vapors and my gas tank is on “E.” After spending a morning at The Georgia Walk for Autism, I always feel like I have been given just the boost of energy that I need to keep on going. I feel empowered, strengthened, emboldened and ready to keep doing what I do. I am reminded why I started this blog in the first place. It isn’t simply to write down my family’s experience with autism, but to try to raise awareness, encourage advocacy, inspire people who may just be starting out on this journey or simply to connect with another human being and let them know they are not alone. But, I’m the mother of 3, the wife of a busy rabbi, a preschool teacher and a blogger. I don’t always feel like I am doing any one of those jobs particularly well, and when I am running low on time & energy, it gets even harder to strike a balance. While I would never turn down a good massage, a day to myself or the ability to eat tons of chocolate without gaining a pound, none of these things gives me quite the same boost as an advocate & parent of a special needs child, as this walk does.
And finally, I feel as if this walk is our family’s chance to stand together, to give back and to pay it forward all at the same time. We stand together as one team, inspired by our captain, Yael. We are a mother, a father and two sisters who are united in our desire to honor Yael, demonstrate our acceptance, love & pride in the person that she is and the lessons she has taught us. We give back to those who helped Yael get to where she is. We know with each step that we take that she would not have come this far without the devoted educators, therapists, friends and family who have accompanied us on this journey. They are often the unsung heroes, the behind the scenes talent that never take center stage. But we know who they are. We walk for them as well. And we pay it forward with the money we raise. We help to fund advocacy efforts, research and interventions that are so incredibly important not only for family’s like ours, but for all of those who live with autism and those who love and care for them.
So, if you happen to be in the Atlanta area on Sunday, May 20th you should come check out the walk at Atlantic Station. If you want to join our team, we’d love to have you. The more the merrier. And if the spirit so moves you and you want to support our team, any donation big or small is sincerely & profoundly appreciated. And finally, if you’ve never participated in one of the nationwide autism walks, I sure hope you’ll consider doing it sometime. It’s a beautiful and powerful thing to be a part of.
Yael ran in her first track meet ever yesterday. I wasn’t there to see it. The meet was in the city and I couldn’t juggle the schedule of my other girls to be there. Thankfully my dear friend Laura was there and captured a few moments on video for me to see.
Yael ran in the 100 meter dash and the 1600 meter event. She finished dead last in both events. I watched the video of her in her final lap of the 1600 this morning and you know what? I was grinning from ear to ear. Even better, when she called yesterday to tell us about the meet she told us that she was so proud of herself. She came in dead last. She didn’t care. She ran the whole distance without stopping. She didn’t give up and she crossed that finish line. That was what made her proud. That was how she defined success. She was tired and it was hard, but she kept on going with her teammates cheering her on along the way.
She doesn’t give up this kid of mine. She never has. Her life has been a long distance run, with a hell of a lot of bumps in the road. But she doesn’t focus on keeping up with the pack. She just puts one foot in front of the other and keeps on running, pushing & striving. She wants simply to do her best. No more & no less…
I’m a proud mama today. Maybe other parents won’t get how I can celebrate a last place finish. What’s the big deal? But if you are raising a kid with special needs… you get it. She finished. And she imparted a little wisdom along the way. On those days when I want to throw my hands up in the air, throw in the towel and simply cry UNCLE, I’ll think of that video footage of my girl coming around the last lap and pushing her way to the finish line… and I’ll dust myself off and keep on going.
Talent will not; nothing in the world is more common than unsuccessful men with talent.
Genius will not; unrewarded genius is a proverb.
Education will not; the world is full of educated derelicts.
Persistence and determination alone are omnipotent.” (Calvin Coolidge)
“Racing teaches us to challenge ourselves. It teaches us to push beyond where we thought we could go. It helps us to find out what we are made of. This is what we do. This is what it’s all about.” (PattiSue Plumer)
I just got back from a two mile run with Yael. I can’t even believe that I just typed those words onto my screen. The fact that she played basketball this year was enough of a surprise, but now my daughter has joined the track team. I’ve said it before, this is the kid that always hated PE and certainly never ran voluntarily. The kid with the stiff gait, who struggles with motor planning and low muscle tone is now going to be running long distance for The Cottage Cougars.
As we ran around our neighborhood, I found myself thinking about the parallels between distance running & life with autism. When you are standing at the starting line, the road ahead can seem so long. When you think about the terrain you must cover to reach that end goal, it is inevitable that some doubt and uncertainty comes to mind. Will I be able to do it? Will I make it through? What if I falter? Or worse, what if I can’t finish? And so it is with an autism diagnosis. You stand at the starting gate of life on the spectrum and you wonder if you’ll be able to make it. The weight of the world seems to be bearing down on your shoulders and the course you thought you’d be running, has suddenly changed! But the starting gun goes off and you simply begin, one step at a time.
Distance running is all about endurance. You need to pace yourself and take it slow or you’ll burn out halfway through. Life on the spectrum demands the same. It is a long journey filled with unfamiliar terrain. You need to start off slowly, taking in the diagnosis and making a plan. What are the most pressing needs that your child has? Where should you begin? What therapies should you seek out? How much does it all cost? And how will you pay for it? Slow and steady, slow and steady, that is the only pace. You remind yourself to breathe. Then put one foot in front of the other until you start to find your stride.
As Yael and I took our second lap around the neighborhood, she began to run out of steam. So, we set short term goals, knowing that each one that we met brought us just a little closer to the finish line. Make it to the top of the hill, the stop sign on the corner & the mailbox up ahead. When you have a child with autism, you learn to celebrate those same small benchmarks, the little milestones that others often let go by completely unnoticed. The first time Yael was able to drink from a real cup at age 3, and when she learned to use a straw just a few weeks earlier. The first time that I asked her how her day was, and rather than echo my question back to me, she answered me with that broken gibberish that only I could understand. The first time that we were able to sing “Happy Birthday” to her without it causing her to have a total meltdown. She was 5 years old and I sang with tears streaming down my face. The first time that she overcame her paralyzing fear of animals and touched our neighbor’s cat & pet another neighbor’s dog, in the 3rd grade. Those were the benchmarks that let us know we were moving ahead, even if the finish line was nowhere in sight. Hell, I don’t think that finish line even exists. But we strive to get closer and closer to each goal. Then we stop, take a breath, stretch, rest & set out upon the next course… toward the next goal.
Running alongside my daughter was truly the highlight of my weekend. I would not have dared to dream of such a moment when we stood at the starting gate of this journey ten years ago. But lap by lap, my kid keeps on going. Sometimes her stride is strong and at other times it is timid & uncertain. But she refuses to stand still and simply give up. I admire her endurance, her perseverance and her courage. The finish line is always moving when you live life on the spectrum. Just when you think you’re about to cross it, the course changes and you have to jump over new hurdles and push yourself to keep going the distance. You can not measure your child’s success by looking at the strides of others. They may run laps around your kid, but as long as your kid is moving, they are progressing and that is what makes them winners.
So next weekend, Yael and I will lace up our running shoes again and go a few miles around the neighborhood. And just as I have since the day we got her diagnosis, I will encourage my daughter to dig down deep, push a little harder and go just a little further. Because I know, with every fiber of my being, that she has it in her to go the distance.
“Believe that you can run farther or faster. Believe that you’re young enough, old enough, strong enough, and so on to accomplish everything you want to do. Don’t let worn-out beliefs stop you from moving beyond yourself.” (John Bingham)
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)
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. 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)
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.
P.S. I am going to ”cc” Autism on this letter, just to be sure we’re all on the same page.
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.
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.
Life can only be understood backwards, but it must be lived forwards.
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)