Contentment

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.

Sometimes Autism Hurts

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)

It Starts With One ~ The Bully Movie

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. http://www.autismspeaks.org/family-services/bullying

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 http://thebullyproject.com/

And visit http://standforthesilent.org/ 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.

Out of the Mouths of Mothers…

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…

Weird

It happened today. For the first time, my daughter used the word “weird” to describe herself. It happened in the midst of a less than stellar morning and once again, she and I were locking horns over the issue of self-care & responsibility. The details don’t really matter, what matters is that time was short, patience was shorter and suffice it to say that nobody will be nominating me for “Mother of the Year” anytime soon.

Conflict escalated and the tears began to flow. I yelled & she cried. So, as my daughter and I later sat, trying to regain composure and talk things through calmly, I asked her what she was feeling. And then it came, that moment I had been dreading. She told me that she was weird, because she was different from other girls and has a hard time remembering all of the things she needs to do to take care of herself. She told me that autism makes it harder to be a teenager and she hates the way that makes her feel. She feels like she is always getting this piece of her life wrong. She said it again, I’m weird, I’m different and I want to know why! The tears were streaming down her face, and as I looked into her eyes, my heart just ached.

I feel like crap. I could have handled things differently. I own that. Hindsight is 20/20 as they say. I feel like I am trying so hard to give her the tools that she needs to navigate this piece of her pubescent, young adult life.  But I can’t help but feel like I am fucking things up royally some days. My daughter called herself weird this morning, and it happened in the midst of an argument that she was having with me. It wasn’t with some other kid, or some ignorant bully somewhere. It was my lack of patience again, my inability to step back and take a breath before speaking, that started this whole thing which spiraled into this scene.

What could I do? I held her face in my hands and told her, over and over again, that she is not weird. Yes, she is different. But different is not less than, it is not bad, it is just different. I promised, as I have before, to try to approach this piece of her life with a greater sense of patience and awareness. She promised to try to stay on top of her lists & schedules, the tools we have given her to organize her self-care. She told me she feels like she keeps letting me down because this is all so hard for her. “I’m trying mom. I’m really trying my hardest,” she said. “It’s just so much for me to think about & I get confused and overwhelmed.” I know that, I told her.  Truth is, she is not letting me down. I am letting her down…

People think that because my daughter falls on the “high functioning” end of the spectrum, that autism doesn’t impact our lives, her life, on a daily basis. They are wrong. It is an ever-present force in our home and in our world. But sometimes even I get caught up in the moment and I allow myself to have the same expectations of her that I do of her sister, only 14 months younger. I allow myself to expect that she will eventually internalize all of the things we are trying to teach her about self-care, when there is a good chance that she will not. She may learn to follow the routine in time, and perhaps she won’t even need the lists or schedules, but that doesn’t mean it becomes inherent. Memorization and internalization are not the same thing. I get angry that I need to keep going over and over the same things. But so what damn it! My kid has autism. And if she needs to learn something by rote drill & practice, then I need to conform my way of parenting, even when I’m tired, rushed or out of patience. Or maybe I need to let some other ball drop out of the air at that moment, instead of coming down on her. Isn’t that how she has learned everything else in her life?

Sometimes I think my need to have her “get” this stuff is directly connected to all of the fears I have for my now teenage daughter, and her future life of independence. Will I still be making lists for her when she is in her twenties, thirties & so on? What kind of independence can she have if she can’t manage taking care of herself, her physical needs and her body? These are the fears that lurk in the back of my mind and in the deepest pieces of my heart. I try not to visit them too often. What’s the point? There are no answers to those questions right now. Besides, that’s my crap isn’t it?

It broke my heart to hear her call herself weird this morning. And to know that the feelings of being overwhelmed & confused were only exacerbated by my epic failure of patience & perspective. She has always proudly embraced her autism, but I knew the day would come where she would begin to recognize the ways in which it makes her life a lot more challenging on every level. I hope she will be able to hold onto that positive sense of self, even with that awareness. But more than that, I am sitting here hoping that I won’t be the one who screws that up. Because today, I feel like I did just that.

My daughter has recovered and has gone about her day. Me, well, as I said earlier, I am not expecting any nominations for “Mother of the Year.” I’m just hoping I can do better tomorrow.

Just Put One Foot in Front of the Other

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.

http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=997071&lis=1&kntae997071=49F4EF23B8D14A758048739F70B1B0BE&supId=283471540

Going the Distance

 

“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)

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.

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)