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.

Camp, Family & Home

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.

Dear Cottage School

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.

An incredible achievement for our girl!

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!

Such a well deserved trophy!

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.

I have never seen my child happier or more confident than she has been this year. What a difference a school can make!

In Her Own Words ~ What The Walk Meant to Yael

Yael, Leora & Noa ready to walk for The YaYa’s!

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.

Me & My Girl!

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)

A Dose of Compassion & Kindness~ Jersey Style

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 

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…

The Theory of the Day…

 

So, let me get this straight?! On national news they announce a possible connection between obese birth mothers and autism. Sounds like they’ve really researched this well right?! Not! Here’s the first troubling piece of fine print: “Although the study looked at obesity in the mothers, it lacks information on women’s diets and other habits during pregnancy that might have influenced fetal development.” Then we get: “Researchers say the study does not indicate cause and effect – and further research must be done to confirm the results.” Great, let’s announce it on national TV, blame the moms for giving their kids autism & then quietly whisper, oh by the way these are only preliminary results from a single limited study of only 1,000 California children. Why is it that everybody and their grandmother who has a theory as to what causes autism seems to be given a national platform without being asked to credibly & fully substantiate their findings with well documented scientific research?! I’m so sick of it…

 

 I have to be fully upfront and honest here and say that in my own personal opinion there has been overwhelming, credible, long term scientific research disproving a connection between autism and vaccines. I am a firm believer in vaccinating children, but also believe parents should have the option to spread out the schedule of vaccines. I do however, respect that others are fully entitled to their own opinions and thoughts on this issue. What I am tired of is the ease with which preliminary and limited studies like this are featured on national forums and somehow become accepted scientific fact. Much as I hope we can unlock the mystery of autism someday, I’d like to see a shift in priorities that begins to put serious effort into how we can best reach, teach, support and care for those with autism. Long term affordable housing that is safe, access to services, better educational opportunities and more. I believe that my daughter was born with autism. I don’t give a crap about Donald Trump’s opinion, which was also given national coverage, nor do I want to hear how Jenny McCarthy “cured” her son’s autism, but with no scientific evidence she too is given a national platform. All this does is muddy the waters of real, important dialogue that needs to be happening about how we can better serve those with autism and the families that love them.

 

Whose got a theory on that? And while we are at it, this mother wants you to know that she’s got enough on her plate. Matter of fact, my cup often runneth over into large puddles on the floor…  so you can keep your guilt, shame & blame to yourself.

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.

All The Rest is Commentary

That which is hateful to you, do not do unto another: This is the whole Torah, the rest is commentary. Go now and learn it. (Hillel)

As I stood in Shabbat services with my daughters this morning, this line in Pirkei Avot (Ethics of the Fathers) stood out to me. I have read it many times over the course of my life, but today, for some reason, it stayed with me, resonating on a deeper and more profound level than it had before. Sometimes it is as if God knows just what it is that your soul needs in a moment of prayer & if you listen to that still, small voice within, you’ll find your way there.

There have been many beautiful blog posts and videos made of late asking people to stop using the word retard. The efforts are being spearheaded by r-word.org and their campaign “Spread The Word To End The Word.” I have personally signed the pledge and shared the site and mission with others. I believe that words have power. They can be used to build, to strengthen, to support, to learn, to educate and to share. They can also be used to belittle, dehumanize, weaken, destroy, promote ignorance and marginalize those already living on the periphery. The “R” word does the latter. That is the truth, plain and simple.

But not everybody gets it. “It’s just a word,” they say. “I don’t mean anything by it.” “What’s the big deal?” And so along with the many profound and eloquent pieces that have been shared through blogs, on Facebook, Twitter and more, I’d like to offer this simple truth. These are words that resonate with me as the mother of a child with autism, as a person of faith and as a human being.  It is the Jewish version of that Golden Rule found in every faith.  That which is hateful to you, do not do unto another.  This is the whole Torah, the rest is commentary.  Now go and learn it.

Speak of others as you would like them to speak of you. Treat others as you would like them to treat you. Choose the words you would have others choose when they speak of you, your loved ones, your friends or your family. Our words matter.

This should be part of our moral compass. We teach it to children from a very young age. In my own preschool, where we lay the foundation of Jewish learning, we talk about using words of chesed (kindness), kavod (respect) and ahava (love). We teach these as an extension of the values that come with being part of a kehillat chesed (a caring community).  I have no doubt that similar messages & values are taught in faith-based preschools everywhere, each cloaked in the fabric of that particular faith and its teachings. Our youngest children seem to understand & embrace these ideals. Where then does it get lost?

That which is hateful to you, do not do unto another.  This is the whole Torah, the rest is commentary.  Go now and learn it.

Sometimes it is the simplest of truths that can be hardest to learn. But as we encounter the commentary of our lives and of our faith, these are the truths that define who we are. They reveal our neshama, our soul, not only to God, but to our fellow human beings.

May the words of my mouth and the meditations of my heart be acceptable to You, Adonai (God) my Rock and my Redeemer. Amen.