I know not how I may seem to others, but to myself I am but a small child wandering upon the vast shores of knowledge, every now and then finding a small bright pebble to content myself with. (Plato)
I am not one who often finds peaceful contentment. This is not because I want for more than I have (though, being human, there are moments when I do feel that way). And it’s not because I pass my days coveting that which my neighbor has. No, the real reason that I don’t often experience this emotion is because by nature I am a bit of a worrywort (my husband might take issue with the “bit” part of that statement), I am a planner and my mind seems to run in a constant state of motion. In many ways, these attributes are things which have served me well as the parent of a special needs child. There is that saying, “A worried mother does more research than the FBI.” It’s true. I think my need to plan & anticipate, a need often driven by my worries, is what propels & enables me to be such a fierce advocate for my daughter.
But, to be sure, there is a downside as well. Because sometimes I am so busy advocating, worrying, planning and anticipating, that I don’t allow myself to simply be in the moment. That’s not to say that I haven’t relished & savored many special moments in my daughter’s journey… I have. But, I’m not sure I allow those moments of contentment to pull up a chair and stay with me awhile. It doesn’t take too long before my mind starts moving again and the wheels are in full motion.
So, here I am up at URJ Camp Coleman with my family. I have the privilege of watching all of my girls in the midst of this ruach (spirit) filled camp setting. Up until now, I’ve gotten all of the positive reports about Yael. She’s in the mix, the girls are inclusive, she’s making friends etc. I’ve seen her smiling face as I’ve stalked Bunk 1 looking for pictures of Yael, Leora & Noa each day. All of that brought me comfort to be sure. But still, there is something different about seeing it for myself. With my own eyes, I can see the joy in Yael’s face. I can watch her interactions with her bunkmates and see the laughter, the playfulness, the camaraderie. I can see this with all of my girls. They are happy, bursting with camp spirit and thriving in this home away from home. Knowing that, seeing that, witnessing that with my own eyes, fills my heart with contentment. I truly feel at peace. The worries are at rest & there is nothing to plan.
This feeling, in this moment, is a gift. And, rather than simply unwrapping that gift, enjoying it for a while & then letting the wheels set in motion once again, I’m going to relish it. I’m inviting contentment to pull up a chair and stay with me for a good, long while. Together, we’ll sit back and take it all in. And I’m hoping that along the way, contentment & I will learn to become better friends.
Having a place to go – is a home. Having someone to love – is a family. Having both – is a blessing. ~ Donna Hedges
Before Yael left for her second summer at URJ Camp Coleman, we were out running a few errands. There were, after all, a million little things to buy and pack before she and her sisters headed off to camp. Yael had been thinking about what she wanted to share with her bunkmates in regard to her autism. It’s a conversation she has had before. She takes it upon herself to educate those around her, to help them better understand her autism & how it impacts her. She speaks with eloquence and grace as she allows her peers to experience the world through her eyes. And just as Yael embraces & accepts herself, she helps others to do the same with her honesty, her insight & her willingness to be so open.
So, as we drove, she asked me if I thought we should practice the conversation she was preparing to have at camp. I thought for a moment & then asked Yael what she felt that she needed. If she needed to go through that conversation with me, I’d be happy to. If she felt confident in her words, her thoughts & her perspective, then perhaps we didn’t need to review. She paused for a moment, reflecting, and then decided that she was confident enough to handle the conversation without any further input or coaching from me or her dad. I love that. I admire that. The truth is, she’ll need that life skill as she moves forward. She’ll need to educate others & advocate on her own behalf. She went on to say that last summer’s conversation was so positive and meant so much to her. “I told the girls all about my autism & you know what Mommy? They really understood & accepted me. They treated me like…. well, like family! I always felt included and isn’t that what family is all about, mom?” And through a stream of tears, I simply nodded and answered, “Yes, Yael. That is what family is all about.”
When we dropped Yael off yesterday, it was not without fear or hesitation. I own my identity as a bit of a worrywort when it comes to my special needs child. Frankly, I worry for all of my girls. They are my heart & my soul. It is hard to entrust them to the care of others, particularly when it comes to Yael. We had once again shared our concerns with Bobby Harris, the director of Camp Coleman, and his wife Ellen Zucrow. Ellen plays a key leadership role as an Inclusion Specialist, helping to support those kids who come to Camp Coleman with special needs. Ellen had spoken to both myself and my husband as we attempted to get all of our ducks in a row for camp. As we arrived at camp and made our way through the various support staff, it was clear that they had created a strong & secure safety net for our girl. Each conversation that we had, from Ellen to the unit head & on down to the counselors, helped to ease my fears & angst. Though I would not be there to watch out for Yael, it was clear that there would be an abundant amount of loving eyes on her, ready to support her in any way that she needed. Each conversation reflected the camp’s devotion to creating a safe, nurturing, inclusive & supportive atmosphere for Yael.
Yael has described family as those who love, accept & include you for who you are. She’s right. Leora, my middle daughter has often described camp as “a home away from home.” So, as I sit here and think about all that Camp Coleman’s staff has done for Yael, and all that they have done for all three of my girls, I can’t help but think of them as family. They don’t simply have my daughter’s back, but they have mine too. And, when I reflect upon the communal spirit that they nurture at Camp Coleman, and the values that they embody, I know that while all three of my precious girls are not with me right now… they are home. Home is a place where you feel safe, loved, cared for and valued. Home is a place where you can be yourself and be celebrated for all that you are. Home is where you find your family, both the one you were born into, and the one that you create. I am so very, very grateful that Camp Coleman has given my children a second home & an extended family. That is a gift & blessing beyond measure.
If a child can’t learn the way we teach, maybe we should teach the way they learn. (Ignacio Estrada)
Dear Cottage School Staff,
Last year at this time, our daughter was preparing to leave her 2nd school. Since moving here, she had spent two years in the public school system, and another three in a private school program. Both had failed to give our daughter what she needed. And so, we came to you with great trepidation, afraid to invest in yet another program, afraid that once again we would be let down & afraid that we would not find a place where our daughter could truly thrive. It is a horrible feeling to carry that kind of fear. Even worse is the feeling that no school wants to truly invest in your child, that they can’t see beyond the label & that they aren’t willing to nurture her potential. And so, this school year began and though our daughter was full of hope & optimism, we continued to carry that fear with us.
But what a difference a year makes. You have given our daughter wings and this year we have been blessed, truly blessed, to watch her soar. Ignacio Estrada said, “If a child can’t learn the way we teach, maybe we should teach the way they learn.” That is the philosophy that your school & staff truly embody and embrace. Yael came home each day with a greater understanding of the materials she had learned. She did not simply recite rote facts, memorized for a test, but demonstrated a grasp of the concepts & content in a way we had never seen before. She sat at the dinner table each night, sharing what she had learned, her voice full of excitement. And, with each passing day her confidence grew stronger. Never before had we seen that side of our daughter. Though she was a good student prior to this, she often did not retain what she had learned and we witnessed her ongoing struggles with projects, homework and classwork. But you sought to gain an understanding of how she could best learn. You did not try to force a square peg into a round hole, asking that Yael learn only in the manner you thought best. But rather, you adapted your teaching styles, playing to her strengths & help to lessen her struggles. Because of that, she received the President’s Award for Academic Excellence. To say that such a moment was beyond our wildest dreams would be the understatement of the year.
Last night, we were truly overwhelmed at the Middle School Graduation & Awards Ceremony. Our daughter was given a trophy and named “Most Dedicated” team member for Track & Field. As my eyes welled up, my heart about to burst, I turned to my husband and said, “Where else would our daughter have been given the opportunity to participate in a team sport, let alone earn a trophy?” Perhaps those schools exist, but they have surely not been a part of our experience, and I am sure there are many parents of special needs children who would say the same. It seems that in so many ways, our schools have forgotten what the essence of team sports is really about. It is about learning a new skill, setting personal goals & striving to reach them and being a part of something bigger than yourself. You gave our daughter a chance to experience that. The child who always hated PE, who was picked last for any team & who never once demonstrated any interest in playing a team sport, is now a jock with a trophy that sits center stage on her dresser!
Your program, and the philosophy upon which it is built, helped Yael to gain a greater sense of organization, responsibility & independence. You did not lower your expectations of her because of her autism, but rather you set the bar high and helped her to reach it. The time management system was an invaluable tool and allowed her to gain a greater sense of independence with her school work. The levels program and incentives for academic performance, responsibility & character were a driving force for our daughter. She approached each school day, assignment & program with the desire to move up the levels system. She strove to demonstrate character, to be a good role model, to be responsible & to be a productive and leading part of the school community. She did that because you asked it of her, because you expected it of her. Many times people hear the word autism, and they immediately lower their expectations of Yael. You didn’t and boy oh boy, didn’t she show us all what she is capable of.
On your website, you state, “The Cottage School’s history of success repeatedly demonstrates that students who come to the school disillusioned or discouraged–some to the point of ‘giving up’ on education–flourish in the school’s environment and emerge as independent, capable, and successful young adults.” No words could be truer, at least not for us. And I don’t know how I can possibly find the words to express our gratitude. Thank you is surely not enough to encompass all that is in our hearts. We owe you a debt of gratitude for giving our daughter a safe space to learn, to grow & to flourish. She spends each day surrounded by peers, all of whom have “stuff” of their own. But somehow these “special needs” kids come together to create a beautiful, supportive & communal atmosphere that is like no other. And they do so, through the leadership, support & encouragement of your teachers & staff. They do so, because you all believe in them and you don’t allow them to define themselves by their struggles, but rather by their strengths.
Yael went off to her last day of school today, tissues in hand. When a student says that they are really sad to see the school year end, you know you are doing something right. I have tissues of my own and I have cried many happy tears this year. I cried at basketball games & track meets. I cried at my daughter’s academic accomplishments, as well as her personal ones. I cried as she played the guitar & took the lead in her drama production. And as I write this letter, it is through a flood of tears and they are tears of gratitude.
Thank you to all who taught Yael this year. Thank you to all who work tirelessly each day to make The Cottage School what it is. You have made a difference in the life of my child. You have given me hope, where once there was only fear. I send Yael off to school each day and I know that she is in a safe place. In today’s world, that means more than you could know. Kids like mine are often the target of bullies, they live their educational life on the periphery, never being fully accepted into the mainstream. But you have given her a school, a community, where she feels at home. She feels accepted & valued for who she is and that is a gift beyond measure. Thank you for an amazing school year. We look forward to all that is yet to come as Yael continues her journey at The Cottage School.
Today Yael wanted to share her own thoughts with you. So, here is her perspective on today’s Georgia Walk for Autism. In her own words…
This is our fourth year walking for autism. While we were driving to Atlantic Station, my Mom and I were talking about why we do the walk. We talked about raising awareness and raising hope.
Today, we did. We raised awareness by inviting our friends and family to walk with us. We let our teammates know about what we want to accomplish this year and about why we want to do the walk. We also raised hope. I know I feel hopeful by looking at how many people are more aware of autism and caring for those who have autism. Today felt great because of all the people we walked with, who love someone with autism.
I am so happy that my friends and my family care for me and that they want to help raise money for organizations like Autism Speaks and The Marcus Institute. For me, on a personal level, I am happy to be different. I feel special with autism. It’s part of me. I feel special every year when I walk. I feel cared for by my parents who have helped me since the beginning of my diagnosis, my sisters who make me smile from their cheering, and my best friends who were so sweet to take their time off & walk with us since the beginning of The YaYa’s. It means a lot that they come and are always there for me. I also loved having my newest team member and homeroom teacher, Lauren, because she knows what it is like to work with special needs kids and is always there when I have a problem at school.
I hope that I can inspire others who are living with autism.
This is what today felt like for me… in my own words.
Everybody hurts sometimes. (REM)
Every now & again I have those moments. When optimism, faith & hope give way to an aching sadness. Moments when autism goes right for my heart strings and tugs at them until it hurts. Moments when the worries I have about my daughter’s future leave me unable to simply focus on the here & now. Moments when the accomplishments & milestones of yesterday do little to soothe the fears & worries I have for my daughter’s future.
I’d like to think it’s okay to have those moments. I am only human after all. Yes, my daughter is on the “high functioning” end of the spectrum. And yes, she has come incredibly far since her diagnosis at age 3. I know all of that. But that doesn’t mean that she doesn’t continue to have very real struggles. She does. She is 13 years old, with the body of a young woman and the heart & soul of a little girl.
I took Yael shopping recently. As is usually the case, it was a struggle for her. And, truth be told, it is a struggle for me. If she were a “typical” teenager, we might clash over styles of what is and is not appropriate to wear. But I shop with my daughter today, much the same way as I did when she was a child. Stores overwhelm her. She struggles to be able to identify things that she likes or doesn’t like. Much of what we take into the fitting room are things that I select for her, as she follows closely behind me, chewing on her fingernails or stimming. I go into the fitting room and help her to adjust clothes properly, so that we can assess their fit. The routine not so very different from the routines we followed when she was in grade school. But she is not in grade school now. And as I look into the mirror, helping her to straighten or adjust whatever outfit she is trying on, I sometimes find myself flashing ahead. I wonder if this will be the scene that we continue to reenact 10 years from now, 20 years from now or even beyond.
And I have similar moments when we contend with personal care & hygiene. Will we still be making lists & schedules for her long past the stages of puberty and into adulthood? I sometimes have images of Post-It notes wallpapering every inch of her living space.
And how will my child, who lives life in a very literal world, navigate her way through the language of sarcasm, metaphors, idioms & expressions that constitute so much of the outside world? She takes people at their word, trusting that they mean what they say & have said what they mean. Sometimes it is funny to listen to her responses. When we say, “You are full of it.” And she answers, “I’m full of what?” Other times, the innocence & naiveté of her words cause a palpable ache that stays with me for a while. Today, Yael’s younger sister told her that she had decided to go to clown school when she grew up. With a straight face she went on to say that since she likes makeup and being silly, she thought it would be a good career. Besides climbing into that tiny car with all the other clowns sure looked like fun. Unable to detect the sarcasm in her voice, Yael concurred, even adding, with great kindness & support, that she believed her sister would make a great clown.
And of course, the question of her independence is never far away. How independent a life will she be able to live? How much & what kind of help & support will she need? And how will we be able to give it to her? The financial fears alone are enough to keep me up at night.
Let me say this. My daughter can live with me until the day I die. I do not see the fears that I carry through the lens of burden or obligation. I will care for my daughter in whatever way she needs me to and I will do so with love. I also don’t see these fears as diminishing all that my daughter has accomplished and will yet accomplish. I place no limits on her and I am reminded daily of her tenacity, her strength and her courage. I am her biggest cheerleader and always will be. But doesn’t true acceptance mean honestly acknowledging both the highs & the lows, the hardships as well as the successes?
I am her mother. And in many ways she is my most vulnerable child. So every now and again I worry. I just do. Every now and again I hurt. Because there is no way around the fact that autism has made & will continue to make her life more challenging. What is wrong with owning that out loud? And why, when I do, must people immediately remind me how great my kid is doing? As if I don’t see that. As if that means my sadness, fear or worry is without merit. Why can’t they just let me feel what I need to feel?
There is a place where fear resides, deep in my heart. I try not to visit it often. Instead I approach most days with hope, believing in the promise of what is yet to be. But I am human and every now & again that place in my heart beats just a little louder and a little stronger. And when it does, those fears come out. And so long as they don’t define all of my days, I must acknowledge them and own that they exist. They are not baseless, they are very real & they are valid. So I feel them. I let myself cry. I reach out for comfort. And in living those moments out loud, through my tears, I am not giving up on my daughter, I am simply giving myself the freedom to be human and to hurt. I think I deserve that.
To hurt is as human as to breathe. (J.K. Rowling, The Tales of Beedle the Bard)
If you missed this episode of “What Would You Do” which aired on ABC this past Friday, I really urge you to take a moment and watch. So often in the autism community, we are faced with ignorance, indifference & judgement. But every now & again, we may be touched by the kindness of strangers. This is one of those times….
I watched it with tears streaming down my face. I remembered so many times that I was dealing with my daughter’s meltdowns, trying to figure out what was upsetting her, how I can help her and trying my hardest to comfort my child. In the midst of some of those, the hardest parenting moments of my life, I was met with unsolicited & unwelcome parenting advice. And if I didn’t get advice on how I should discipline my child, I was met with cold stares followed by people simply shaking their heads & turning away. So often I left supermarkets with a full cart of food standing in the aisle. I left playgrounds and went home to cry. My child was in pain, struggling, and I didn’t know how to help her. I felt alone. Harder were the moments when people would ask me why my daughter was struggling & I would stand there unable to answer. Damn it! Didn’t they know that if I knew what the hell she needed or wanted, I’d be giving it to her! Inquiring minds may have wanted to know… but what about what I wanted & needed in those moments?!
We’ve dealt with stares as my daughter stims. Though she doesn’t do it as often these days, she used to flick her fingers vigorously as she stimmed back & forth. She would bring her toys or fingers right up to her eyes, looking at them solely through her peripheral vision. Or she would roll her head from side to side repeatedly, much the way Stevie Wonder does. She stood out and over time, this mommy grew a thicker skin & realized that if she wasn’t bothering anybody, then she should be free to simply be herself. Let others change their perceptions & stereotypes. After all, they were the ones with the problems, not her.
These days, I am older, tougher and far less inclined to deal with anybody’s bullshit. Age, experience & confidence has a way of doing that to you. Outwardly, my daughter’s autism shows itself in more subtle ways, though she still stims quite a bit, sometimes at a dizzying pace. And, as she has come to understand her own autism, she has learned to advocate for herself & to educate others. But, as every autism family does, we have our run ins with ignorance every now & again. Still, it truly touched my heart to see this piece on ABC. It gives me hope that autism awareness is indeed growing. It renews my faith in people and their capacity for compassion & kindness.
And, since it’s Friday, you know Ryan Gosling has something to add to the conversation…
Jew “ish” Ryan Gosling… well, let’s just say that he’s simply kvelling (extremely proud) over those cafe patrons! It gives him such nachas (joy) to see people being so hamish (warm & loving). And all that emotion clearly has him emotionally overwhelmed & faklempt. Can you blame him?
And his alter-ego Special Needs Ryan Gosling… yeah, well… sometimes all it takes is a look to shut ignorance down… especially when you look like this!
And this last one is for my friend Janel, who sure can get her Jersey on when she needs to. Especially when it comes to her kid. Her Jersey peeps sure did her proud in this segment!
Check out all that Ryan has to say this week over at extremeparenthood.com
If I am not for myself, who will be for me? And if I am only for myself, what am I? And if not now, when? (Hillel)
Today my husband and I took our girls to a screening of Bully. The screening was sponsored by BBYO (B’nai Brith Youth Organization), several area synagogues (including our own Temple Beth Tikvah) & other local Jewish organizations. As I sit here trying to write this post, I am feeling emotionally overwhelmed by the film. It was a difficult movie to watch and I cried my way through most of it. But, as I told my girls, there are things in life that you must look at, hard as they are to see. You must open your eyes so you can bear witness, so you can understand, so you can learn & so you can respond. This is one of those times. And this was one of those movies.
Following the movie there was a brief discussion led by a facilitator from The Rainbow Center. Many of us left the theatre with our eyes red, our hearts heavy, feeling emotionally exhausted from what we had just seen. Our family continued the conversation in the car ride & as we sat around the dinner table. We shared our feelings about what we had witnessed and talked about ways that we can make a difference in the lives of others. We went through each of the stories featured in the film and talked about what could have been done differently. What could the schools have done? What could students have done? And what could parents have done? These are not easy conversations for a 13, 12 & 9 year old girl to have. But they are important conversations and these days, they might even help to save a life. My husband and I asked more pointed questions about what our children are seeing & experiencing in school, and what their peers may be contending with as well.
Bullying is not really the right term for the horrors we witnessed in this film. Emotional abuse, physical assault, psychological torment… these are words that are far more accurate in describing what the children featured in the film, and what 13 million children a year in our country, experience on a daily basis. Three million children are absent each month because they feel unsafe at school. According to Autism Speaks, “It has been suggested that children with autism spectrum disorders (ASDs) are especially vulnerable to bullying. The Interactive Autism Network (IAN) is now sharing initial results of a national survey on the bullying experiences of children on the autism spectrum. The findings show that children with ASD are bullied at a very high rate, and are also often intentionally “triggered” into meltdowns or aggressive outbursts by ill-intentioned peers. The study found that a total of 63% of 1,167 children with ASD, ages 6 to 15, had been bullied at some point in their lives.
So, in light of those statistics, here’s what I want to know? Why do we continue to define a School of Excellence by scores on a standardized test? Why do we assume that if a school can demonstrate high test scores, that no child is being left behind? In this film we were reminded in the most heartbreaking ways, that our schools are failing those students who are being victimized. School officials continue to turn a blind eye, saying kids will be kids. They belittle & ignore the cries of parents and children who come to them in the hopes of making things better. They throw their hands in the air and saying there is nothing they can do. Let’s be honest, any school can stick a sign on the wall and define themselves as a Bully Free Zone, but a sign does not make it so. In one sickening scene the school assistant principal forces a bullying victim to shake hands with the boy who has been tormenting him. When he initially refuses to do so, she then tells the victim that his actions make him just the same as the bully. After all, the bully was offering an apology & his victim turned him away. Is this what it’s come to? And this same assistant principal later responds to the concerned parents of another bullying victim by telling them that “School buses are notoriously bad places for lots of kids.” In other words, the torment your child is suffering is simply a rite of passage, deal with it, accept it, it’s just the way it is. I can only hope that when the national spotlight reflects back upon this school, they will be shamed into doing something more.
Here’s how I would define a School of Excellence. It would be a place where children are consistently taught to respect their classmates, teachers & peers. It would be place where children feel safe to come and learn each & every day. It would be a place that puts a greater value on the humanity & dignity of the children they are educating, than on standardized test scores. It would be a place where students who degrade, dehumanize & victimize others face serious & immediate consequences. It would be a place that promotes & supports programs that teach about diversity not just one or two months out of the year, but as a core piece of their year-long curriculum. It would be a place that creates a culture of caring, compassion, kindness, acceptance & inclusion. It would be a place where character education matters just as much as academic education. Because I will tell you this. I want my children to get good grades, to do their best and to work hard in school. But more than that, I want them to be good people.
And as we left the movie today, I thought about the questions that so many of us ask our children at the end of their school day. We ask: How was your day? How did you do on that test or project? What did you learn? But, this film makes clear that it is no longer enough to ask those questions. We must go further. Children who are being victimized often don’t tell a parent what is going on until it is too late. They suffer in silence too embarrassed or afraid to tell. Perhaps they hope that it will simply pass or they believe they can handle it on their own. But they are just children and these are burdens too great for them to bear without us. And so, perhaps we must ask our children:
What kind of human being were you today? Did you show kindness to another person? Were you a good & supportive friend? Were people kind to you? Did anybody do or say something today that upset you? How did that make you feel? How can I help you with that? Are you seeing other children at your school being left out, picked on or ostracized? How can you reach out to those people? How can you make a difference? Perhaps we need to ask them not only what they want to be when the grow up, but who they want to be right now?
We need to remind our children on a daily basis that they matter. We must tell them they are important. They need to know that we are their safe place. They can talk to us. I tell my children that often, but they can not hear it enough. They need to believe & trust in us to do everything that is within our power to help them, support them, guide them, fight for them & to ensure that they can live their days free of fear and abuse. We need to remind them that there is always hope that things can get better. So that suicide, or brandishing a gun does not become the only way out they can see.
I believe this is one of the most important documentaries of our time. People have asked me to tell them whether I think it is appropriate for their children. That is not a call I can make. My husband had reservations about taking our youngest, who is only 9. But given the things she is exposed to on TV and the conversations we have had around shows like Glee, I felt that it was important that she come. And I am so glad that she did. The film was disturbing, but not overtly graphic. The conversation our family had following the movie was not an easy one. And it is a conversation that will continue. But I want my girls to understand what bullying really is. I want them to recognize it and the toll it can take on someone’s life. I want them to feel empowered to stand up for themselves & for others. And lest we believe that this is only happening in other places, other schools or to other people’s children… it was evident by the stories shared after the movie, that it is happening everywhere, in our own backyards, schools, playgrounds and on the buses our children ride each day. Several audience members who live here in Metro Atlanta are now homeschooling their children as a result of bullying & complacency on the part of the schools. So the bullies remain seated at their desk and the victims are forced to learn from home. When did this become an acceptable model of learning?
The film ended with these powerful words, “Everything starts with one.” Each of us can be that one. My children can be that one friend, an administrator can be that one safe person who acts on a child’s behalf. A school bus driver can be that one who stops the bus, reports the abusers and ensures that the bus is a safe place to be. A parent can be that one voice who speaks up, stands up & fights for their child. And soon enough one voice, becomes two and two becomes more and before you know it a chorus of voices will come together & bring transformative change. But, everything starts with one… and so, we must start.
Educating the mind without educating the heart is no education at all. (Aristotle)
To learn more about the film visit
an organization started by Kirk & Laura Smalley, following the suicide of their 11 year old son. The mission of this group is simple: End Bullying. Save Lives.
In moments of great heartbreak, I’ve been on my knees & cried
In the midst of stares & judgement, I have truly tried
to teach, to talk, to listen
to make others understand
I’ve fought with words of eloquence
And with strength to take a stand
I’ve been praised for poise & thought
In the stories that I write
I’ve rehearsed my lines, the arguments
I must take into each fight
But sometimes I simply offer
The unedited version of me
The raw emotions I sometimes feel
The ones you may not see
Just beneath the surface
Beneath the humor & the tact
They too are a piece of me
And I would not change that fact
I’m just a mom whose trying
To make sense of it all
To guide my daughter on this spectrum
To help her when she falls
I can find humor in the foolish
Strength among the scars
Rainbows hidden in the clouds
And solace in the stars
But ignorance can bring out
The angrier parts of me
The words far less appropriate
Than others want to see
But when it comes to my kid
I’m a protective mama bear
Sometimes my patience just runs out
And tempers surely flair
When tears of rage are streaming
And flowing down my face
When ignorance runs rampant
And seems to occupy every space
I’m entitled to simply let it go
To let loose and safely share
Amongst those who love me
Or those who have been there
When I write, it is a piece of me
A reflection of my life
The good, the bad, the ugly
The joy & yes, the strife
The things that make me proud
And others, not so much
The lessons that I’ve learned
The lives my girl has touched
The battles we have waged
The failures on the way
The milestones my girl has met
Since diagnosis day
So if my words are chosen with eloquence & care
Or if they are unfiltered
More primal & laid bare
Do not stand in judgement
This road is ours alone
I have not walked in your shoes
And I can never know
What makes you scared & angry
What keeps you up at night
What worries course through your veins
What battles you must fight
So I’ll continue writing
And I’m gonna keep it real
This blog is my sacred space
A place where I can feel
The language a reflection
Of what autism brings with it that day
And the imperfect words this mommy
hopes to share along the way…
And with that conversation starter… it’s time for another round of Special Needs Ryan Gosling at extremeparenthood.com
Autism Awareness Month seems to bring every crackpot out of the woodwork, claiming to have a new theory on what causes autism. I’ve already shared my perspectives on the so-called study linking autism to obese mothers. If you haven’t read it, you can check it out here:
As for Ryan, he hates to see us getting stressed out over these media stories. So, he’s decided we need to get unplugged & spend some time with nature…
And in case you were wondering how Ryan feels about stories & studies that blame us for causing autism…
And never to be left out on Fridays, Jew “ish” Ryan Gosling has something to say as well… in case you need some translation of his yiddish zaftig is full bodied & pleasantly plump and mishegas is nonsense or as my bubbie used to say, “nonsense talk.” And a nosh is a little snack… because bubbie always believed in a little comfort food to soothe what ails you.