Respectful Self-Advocacy

                                  

Ben is enjoying a dinner out with mom that he proudly ordered by himself.

“Students will write opinion pieces on topics or texts, supporting a point of view with reasons and information.” -5th Grade Opinion Writing Standard

Sounds like a lofty goal for children, doesn’t it?

Opinion writing is now part of the Florida writing standards for children in grades K-12.

As much as I love talking about education, this article is not about teaching kids to write.

This article is about advocacy.

Because a person’s ability to express his opinion is so much more than just a writing skill. 

It is a life skill.

Recently, a group of colleagues and I got together to talk about how elementary school children could learn to write opinion essays.  Our goal was to look at how opinion writing progressed across grades, starting in kindergarten.   Are children as young as five years old capable of doing this work?  We believe so.  Our goal is to first teach children how to engage in conversations where they will learn to present their point of view using evidence, and then teach them how to apply this concept to writing.

During the summer, I had the privilege of attending a Teacher’s College Reading Institute held at Columbia University in New York City.  One keynote speaker, Mary Ehrenworth, spoke on this very topic.  One of the first questions that she posed to us was this:

Why would we want to have teachers and kids become good at argumentation?

After the audience discussed this for a few moments, Mary quieted the audience. She looked around the auditorium packed full of educators from around the world and asked us, “Do we want to teach a generation of compliant kids or a generation who can be activists?  Kids may think they are being polite when sometimes they are just being compliant.”

This statement has replayed itself in my mind months after the keynote.  I find myself coming back to it, turning it over in my mind.   I am still thinking about the implications of her statement for myself, for my son, and for all of us.

As a child, I was quiet, meek, and mild mannered.   Looking back on it now, I realize that I was compliant, and I was rewarded for being compliant.

I was a good student.  I followed the rules, got good grades, and didn’t cause any fuss.  During each parent and teacher conference, the teacher would tell my parents some variation of the following: “Jessica is such a pleasure to have in class.  She is a model student.  She is a bit shy, but she always gets her work done and is such a good helper.  I wish I had a whole class of Jessicas!”

However, my quiet, passive approach to school did not necessarily translate into a positive learning experience for me.  I have very few memories of my elementary school years.  They passed in a hazy blur of watching the clock and finding quiet ways to pass the time.  I was a smart student, but school did very little to challenge me, especially the elementary school years.

There were times when I needed things from the teachers but was afraid to speak up and ask for them.  It wasn’t that I was scared of my teachers.  It was that I didn’t know how to respectfully speak up and ask for what I needed, especially if it involved interrupting them when they were teaching or when they appeared to be busy. 

One very embarrassing example was in first grade when I really, really needed to use the restroom.  However, the teacher kept talking and talking to the class.  I waited and waited until she would take a breath from her instruction so that I could ask her to go…until I could wait no longer.  I still feel the shame of being that first grader who had to go to the clinic for a change of clothes. 

As I grew older, I rarely got into in any sort of argument with another person or expressed my view if I knew it was different from what the other person felt.  Most of the time, I would agree with the other person’s idea, whether it was a place to eat or a topic of conversation.  I rarely corrected someone, even if I knew they were wrong.

As a young teacher, I was excited to share new and innovative approaches with other teachers on my team.  I quickly learned that not all appreciated these new and different ideas.  Once a particular teammate cornered me in the hallway and told me that “we’ve done things this way for the past ten years.  Who are you to change that?” After that, I stayed very quiet at team meetings.  I was afraid to voice my opinion.  I would close my door and do my thing.  It took years and a different school before I felt brave enough to share my ideas again.

Since then, I have grown into my ability to engage in respectful self-advocacy.  In my role as a literacy coach, I often have to play the part of facilitator, a person who helps to ensure that all voices are heard.  I have learned how to engage in respectful dialogue that honors different points of view.  I have learned that it is both important and necessary to engage in this type of healthy discourse.  It allows positive change and growth to happen.  I also learned that listening to points of view that I don’t agree with, without giving my own perspective, is tacitly agreeing with that person’s thinking.  I have learned to add my own perspective to the conversation in a respectful way.  Even if it doesn’t change the other person’s mind, at least I have voiced my own opinion and thus provided an alternative point of view for others to consider.

Unfortunately, the art of self-advocacy and engaging in healthy debate was not something that I learned through school, but now I have the opportunity to teach it to other children, and most importantly to my son.

It is even more important for my son to learn self-advocacy than it was for me.

My son has a disability that impairs his ability to communicate with others. 

When Ben was first diagnosed with autism, teaching him self-advocacy did not even enter my mind.

It should have.

When Ben was little, he had difficulty expressing his needs with words, and I was embarrassed by the attention that Ben would draw on us.  I remember when he would have a meltdown in the grocery store, I thought that every person in the store was hearing him and judging us.  And, even if they were, back then other people's opinions bothered me a lot more than they should have.  I had not yet learned that behavior is communication, and Ben was expressing his needs to me. 

Then came a brief period of time when I wanted Ben to act like the other kids.  I thought this autism thing was temporary, and that I could outsmart it.  I believed that through great therapy Ben would eventually overcome his autism.  And then, when he was finally like the other kids, everything would be better.  I have since learned that autism is a part of Ben’s neurological makeup, and the ultimate goal is not for Ben to "beat" his autism.  The ultimate goal is for Ben to become a confident, successful autistic adult who knows his strengths and limitations.

Many (not all) autism therapies teach compliance and strive to make the autistic individual indistinguishable from his “normal” peers.  They reward for good eye contact.  They reward when the child raises his hands on command.  If the child won’t raise his hand, then the therapist raises the child’s hands for him and gives the child a reward.  I have read many, many articles written by autistic adults that speak of therapies such as this.  They tell of how they felt physically violated by these approaches.  Rather than learning to be “normal”, the message that they learned is that their bodies are not their own anymore.  Rather than learning tools for self-advocacy, they learned to obey adults at all costs, even if their mind and body was telling them this was wrong.  Passive compliance makes this already vulnerable population especially susceptible to abuse of all kinds.  You can read articles like “Quiet Hands”  and an article about ABA, or Applied Behavior Analysis, that offer an autistic adult's point of view on the ramifications of these different approaches.  

Encouraging self-advocacy does not mean ignoring the rules.  I expect Ben to be respectful and to have good manners.  Autism is not an excuse for bad behavior, but it is important that those in his life recognize that his behavior is communication, and to look for what he is trying to communicate through his behavior so that we can channel him towards more appropriate forms of communication. 

The child who is a self-advocate at school is so much more than that impertinant student who tells the teacher that they spelled something wrong on the board, or they marked an answer wrong on a test.

Already, Ben is learning to ask for what he needs and wants in appropriate ways.  He is starting to label his feelings and recognize when his environment is becoming overwhelming.  He is learning to let his teachers know when he needs a break.  He is starting to tell the children on the playground who play too rough, “I don’t like that.  I want you to stop.”  All forms of self-advocacy.

Ben’s actions may never appear “normal” to the rest of society, but I don’t believe that he should have to change the person who is to make society more comfortable.  If he’s different from the rest, that’s okay with me.  Being different is not a character flaw.  Just because he doesn’t act the way certain people think he needs to act, it does not make him inferior.  It just makes him Ben.

It hurts me to know that some people who will come into his life will not understand this.  They will seek to change him into something that is easier for them to accept…something closer to what they need him to be.  But, in doing so, they are forcing him to compromise on the very essence of who he is, and I’ve watched the repercussions of those actions. 

And so, I plan to teach him respectful self-advocacy. 

This starts by giving Ben a voice.

This is why Ben now orders for himself in a restaurant and asks the server when he needs more lemonade or cheese on his pasta.

This is why, whenever an adult asks me a question that is meant for Ben, I tell them to ask him.  I want others to see Ben as an individual and recognize that his point of view matters.

The more Ben has the opportunity to express his feelings and ideas, the more he can begin to change a belief system about what people with autism can and cannot do.

And, if he can’t succeed in changing the thinking of others, at least he can know, deep inside, that he is a person of worth, and that his ideas have value.

This is my hope for my son, and for all children.

Because I would like to raise a generation of activists.

Our world needs it.

Musings of a soccer mom #sensoryhop

Ben (far left) working hard to follow coach's lead during soccer practice.

There are so many things swirling around in my mind today, and it is hard to know where to begin.  As with so many things, it is probably best to begin at the beginning, so here goes.  Today is soccer Saturday.  This is the second Saturday that Ben has played soccer this season, and this is Ben’s second season playing soccer.  I guess that officially makes me a soccer mom.

There are only five total players on Ben’s team.  Well, six, counting the little boy on the sidelines who refuses to leave his mom’s side.  Most of the players are between one to two years younger than Ben.  We asked to keep Ben in the younger league this year rather than moving him up, and it appears to be the right decision.  Ben is developmentally on par with his peers, in both skill level and maturity.

Overall, this season is going much smoother for him, even though he had an amazing coach last season.  As I watch Ben performing the practice drills with the team, I marvel at how far he has come. He listens to his coach.  He follows coach’s directions, weaving the ball between the cones before kicking the ball triumphantly into the goal.  As I think back to last season, when he would kick the cones over and kick and miss the ball as frequently as he made contact, I recognized tremendous growth.  As with many things in life for Ben, it takes him longer to master a skill or a milestone then the “average” child, but he always gets there in his own time.

This season, he is feeling confident because he knows what he is doing.  Ben understands that the point of soccer is to kick the ball in the goal, and each time the ball swishes in the net, he gleefully exclaims, “1 point…2 points…3 points!”

As the game begins, Ben runs hard to keep up with the other players.  He still holds back and doesn’t like to get in too close to the cluster of little bodies that swarm around the ball, but he stays much closer to the action then last year.  Today, for the first time, he even kicks the ball in the goal.  The greater the energy of the crowd, the more charged he becomes.  As the crowd cheers, Ben’s body seems to become charged with electricity, and he leaps in the air, arms flailing wildly about.  

I notice that Ben’s arm flapping and other stimming (self-stimulatory) behaviors become much more pronounced in the moments prior to the whistle blowing, as the teams gather on opposite ends of the field and wait.  As soon as the whistle blows, the extra flapping subsides and he concentrates on the game. 

The sun rises higher in the Florida sky.  It is going to be another warm day.  There is no hint of chilly fall weather here.  My mind begins to wander.  I think back to an article I recently read called “The right- and surprisingly wrong- ways to get kids to sit still in class”  You can read the article here.  The article talked about how kids today don’t get nearly enough physical exercise.  At school, the average amount of time outside is about 20 minutes a day, though the author claims that children need an hour or more of physical activity during the school day to be calm, alert, and ready to learn.  As a teacher I believe this to be true.  When the author mentioned this idea of devoting an hour of the school day to exercise to a group of teachers, however, they literally laughed out loud and explained that this was sadly impossible given the curriculum demands and mandates.  Again, I know this to be true.  The teachers in the article talked about how they provide their students with five minute “brain breaks” of physical activity to let the kids “get their wiggles out” between subjects, such as math and reading.  The author, who is an occupational therapist, said that while this is beneficial, it does not resolve the core issues facing our children.  The author posited that one of the contributing factors to the rise in ADHD, especially in young kids, is lack of time for physical activity.  Activities such as rolling down hills, spinning around on a merry go round, and going upside down that were hallmarks of our childhood served a very important purpose for us as children.  All of these physical activities are necessary to stimulate the vestibular system in order to have a healthy, balanced body, and sadly, our kids today get very little of it.

I reflect on this and think about my own son.  I know that he has approximately a half hour of outside time during the school day, whether it is through structured PE or recess.  I know that the teachers take the kids outside on the playground after school as part of the after school program. I know Ben’s teacher builds in opportunities for movement in the classroom.  They cannot devote more time then this to exercise, and I understand.  I know the requirements all too well.

I watch my child on the soccer field, waiting for the whistle to blow.  I watch his fidgets and wonder…Is there more I can be doing?  Is there more I should be doing? 

Just the day before, Ben’s teacher and I touched base over the phone, as we frequently do.  She and his OT at school had been talking a lot about Ben’s difficulty focusing.  As I watch Ben on the soccer field, I notice his stamina waning after the first fifteen minutes or so of the game.  Not only is he getting physically fatigued (partially due to the fact that only one player is able to sit out at a time during the game), but he is starting to lose mental focus.  He is slower to notice the direction in which the ball is traveling and catch up to his teammates.  His coach has to redirect him more frequently towards the action.  The arm flaps become more pronounced as he waits for the whistle to blow.  And then I think to myself, “He is only five.  Is it fair to expect so much?”

My husband wonders aloud if this is how he acts at school, and I reply that it mostly likely is.  Kindergarten today is very different then how it was when I was in school.   As an educator, I know just how academic kindergarten has become.  I know the expectations for the children.  Thankfully, Ben has a strong math sense and is showing potential as a reader.   In fact, his math and reading skills are above where he needs to be for his age, but I know that this does not always translate to his performance in the classroom.  I know that his difficulty focusing will also impact his test scores.  Yes, even in kindergarten he will take a wide variety of assessments during the school year.  Luckily, Ben has the testing accommodation that allows him to have tests given to him in small segments.  Otherwise, he rushes and performs much lower than his true ability, as happened for him on a recent computer test that all kindergarteners in our district took. 

I am all for high academic standards.  I believe students can rise to high expectations and I believe in the ability of all children to learn.  I know that Ben has an amazing teacher who structures her classroom in a way that allows children to thrive and learn at the highest levels.  I truly believe that Ben has won the teacher lottery by being in her classroom.  He is learning so much and is thriving under her instruction and care.  But, as I watch Ben play his soccer game, I start thinking forward to when Ben will be in first grade…third grade...middle school and beyond.  The curriculum and assessments are hard enough for the “average” student.  How will Ben perform as the demands of school continue to increase? 

This week I gave three trainings for teachers on curriculum and the new assessments that will replace the statewide FCAT testing for our state this year.  Other states across the nation are implementing similar assessments for the children.  For the writing test this year, fourth and fifth graders will have 90 minutes to read anywhere between two and four passages, all on the same topic, and then they will be expected to write an essay either giving their opinion or facts and information on the topic, using evidence from the articles that they read.  For our fifth graders, they also have the extra step of having to type this on the computer.  By the time Ben gets to third grade, as it stands now, he will be taking that same test on the computer, because that is the plan for the rollout in the coming years.  Third grade is three years away.  I think about the expectations, and I look at my child and wonder, “Will he be ready?” and, most importantly, “What can I do to prepare him?”

As literacy coach, I receive information about the curriculum and new assessments, often before the teachers at my own school.  One of my jobs is to train and prepare teachers for these changes, and yet I feel ill equipped as a parent to prepare my own son for them. Even with all I do at home to reinforce the concepts that I know he is learning at school, I still feel as if I am doing a poor job. 

By the time I pick Ben up from school most days, it is dinnertime, and then after homework, it’s time for bath, books, and bed.  Twice a week Ben attends private Occupational Therapy to work on his fine motor and social skills.  He puts in long days every day, just as I do.  As I think about the importance of physical exercise, and the relationship between physical activity and focus and achievement in school, I’m thinking about what else I can do to help Ben beyond soccer on Saturdays. 

What physical activities do you do with your child?  Do you find it has a positive impact on your child’s ability to focus in school?  What are your worries for your child and their future in school?

An InLinkz Link-up

Make The Time

Most of my posts on this blog are all about my son, Ben.

This post is different. 

This post is all about me, and it’s all about you

Let’s face it- as parents we often put our needs last.  And as the parent of a child with special needs, this is most definitely the case. 

I know that I should make time for myself.  My own mother reminds me of this all the time, but I always think, "Easier said than done!” 

During this past year since Ben’s autism diagnosis, making time for myself just seemed plain selfish.  Even if I wanted to do something for me, at the end of the day I would be too exhausted to do anything else except to collapse onto my armchair and watch a bit of mindless TV (if that) before heading to bed.  In fact, sleep became one of the biggest necessities in life, because without it, my ability to function through the day really screeched to a halt.

I love my son Ben with a depth that I didn’t know existed before him.  And, for a time, I thought that the loving him meant allowing his very real and legitimate needs to engulf my entire world.  His schedule took precedence over my own.  I spent a great deal of my time worrying about finding the right school to meet his needs, researching the most innovative therapy and approach to help him succeed, and striving to reinforce his learning at home.  Every moment was a teachable moment not to be missed or squandered, and, if I had a few moments for myself, then the guilt would creep in.  My needs came in at a distant last.

This weekend I had the opportunity to spend a little time with some old friends.  I met one for dinner, and then had lunch on the Saturday with two others.  This time with my friends provided me with a much-needed perspective.  Autism was not the center topic of conversation.  Neither was parenting.  It was a much-needed break.

As we talked, one friend asked me how my past year has been since Ben’s diagnosis, and I told her that, quite honestly, this past year, I lost sight of myself within the magnitude of figuring out this thing called autism, the therapies, the services, and the constant worry about his future. 

As I sipped tea and chatted with my friend, I listened to her talk of her trip to North Carolina, where she did yoga daily and took the time to breathe the fresh mountain air.  This friend of mine had just come off an equally stressful year, though her stress centered around her huge responsibilities at work.  As I listened to her share how she had to let go of some of these responsibilities for her own physical and emotional well-being, I realized that, slowly I was finding my balance too. 

Ben is feeling happy and successful in his inclusion kindergarten class.  He is in great therapies that are helping him to progress.  Life is becoming more…balanced.  Not to say that Ben’s needs have taken a backseat, but they are no longer allowed to overshadow my own. 

Because, in the midst of the stress and turmoil that can come from raising a child with special needs, it’s hard to imagine finding time for a week in the mountains, let alone a day away at the spa.  But, finding time for ourselves doesn’t have to be that fancy or elaborate, though vacations are certainly nice if you can swing them.

For me, I look for the moments that allow me to rest and unwind.  I seek to carve out pockets of time within the day that are for me and me alone.  Moments whose sole purpose is focusing on my physical, mental, social/emotional, and spiritual health and well-being.  Steven Covey refers to it as sharpening the saw.  Covey says that “feeling good doesn’t just happen.  Living a life in balance means taking the necessary time to renew yourself.”

I challenge you to look for moments in the day that are just for you.  Here are some that work for me.

Physical:

I love to take a long soak in a hot bath after Ben has gone to sleep.  I pour in the bath salts, light candles, and just let my body rest.  I try to do this a couple of times a week.

I may not be able to do yoga on the mountains, or even make the class at the local YMCA, but I can do my yoga tape at home and still let my body feel the benefits. 

For some, exercise and walking are their release.  Now that Ben is in kindergarten, he’s able to stay in the after school group, which gives me an hour or two where I can walk, go to the gym, or catch up on whatever I want to do. 

I also try to practice deep breathing throughout the day.  It helps me to stay calm and centered. 

I’m also recommitting to eating right.  Ben is a picky eater, and it’s been very easy this past year to simply grab fast food on the way home from therapy in the evening.  This year, I’m being very intentional about the foods that I am eating, and I’m feeling so much better already.

Mental:

For so long, the only music I listened to was Disney music.  Then one day, as I was working at school with a new colleague, and she asked me about my favorite new music, I realized how out of touch I truly had become.  After that, I started listening to my stations on the radio again.  I pulled out the tracks from my favorite musicals while driving to school and I felt my mood lift. 

Reading is also one of my favorite hobbies, but, for the past year, most of my reading centered around the topics of teaching or autism.  Lately, I’m branching out and revisiting my favorite authors again.   Even after a busy day, I try to make time to read something I really want to read. 

Writing this blog has also been a great mental release for me these past few months.  I love to write, and this blog has given me an outlet and a purpose.

Spiritual:

I have always been a very spiritual person, but my spiritual health has taken a hit this past year.  I’ve been trying to be more intentional about finding the time to pray and to worship. 

For the first few years of his life, Ben had great difficulty attending church because the sensory overload of being inside a building packed with people, bright lights, and lots of activity was just too much for him.  We did not want him to form a negative association with God, so we decided to take a break from church for awhile and study the Bible at home instead.  However, this past summer, Ben had great success attending my parent’s church, so I am excited to give church another try. 

In the meantime, I make quiet time for God, and reconnect with him when I visit the ocean and in the quiet minutes before Ben wakes up from bed.

Social/Emotional:

By nature, I’m a quiet person with a few close and loyal friends.  I don’t need a lot of social interaction to feel fulfilled, but friendship is very important to me.  I try to make time to have lunches with my friends whenever I can.  It’s important to talk, laugh, and reconnect. 

I make time every week to call my family. Since I live half a country away from them, I need that time to hear their voices, as my mom said to me on the phone tonight. 

I also need time with my husband, even if it’s just an evening at home to talk and share a home cooked meal together. 

I’ve also made some friendships with the moms that I have met through Ben’s therapy groups.  Sometimes while the children are in their group, we’ll head to the local Starbucks, have a coffee, and chat.  Making time for these moments helps keep me feel connected and fulfilled.

I used to think that I was the kind of person who didn’t “need” that extra time for me.  That I can get by just fine without it.  As I look back on this past year, I now realize that I was wrong.  Because, truth be told, Ben needs me to be at my best, and the only way that I can be my best is to make time to care for myself first.

Little changes can truly make a big difference. 

Find those pockets in the day that are just for you.  It’s vital that you do.

Teach Your Children Well

In this photo, Ben is painting with his friend at her birthday party.  They are two artists sharing a set of paint.  

Friends, I need your help.

I know that some of you have children, and some of you do not.

Some of you I know in the real world, and some of you in the virtual world only.

Right now, I need help from all of you.

I’m not one to make requests, but I need to talk to you about something that has been going on within the autism community.  I realize that you may not be aware of what has been happening in the media lately.  I’m the kind of person who usually avoids watching the news because I hate seeing all of the negativity in this world, but some recent events have captured my attention.

Bullying has always been an issue between children, and it has always been a concern to me as a teacher and as a parent.  But, more and more often, the victims of these malicious attacks are autistic.

In Bay Village Ohio, an autistic teen was the victim of a cruel ice bucket challenge prank.  A group of teens dumped a bucket containing feces and bodily fluids on an autistic young man, telling him that it was part of the fundraiser and captured it all on video, which was then plastered all over social media. 

In another event that happened closer to my home in South Florida, police responded to a 911 call.  When they arrived at the scene, they found a young man lying in the middle of a road.  This autistic teen had been lured to a party by his so-called friends, only to be beaten senseless and then forced to walk to a spot on a road where he then collapsed.  The video of their brutal attacks has also gone viral on Facebook and all over the Internet. 

Friends, my son is getting older and this year he started kindergarten.  I feel deep empathy for these victims and their families, and I cannot help but think that in six years time, my son will be in middle school.  Many of you have children who are about the same age as mine, and these are issues that all of our children will be facing very, very soon.  Others of you have children who are already confronting these very issues right now, so for you, the matter is even more urgent.

Because, as Diary of a Mom says here in her post called Selfish Diplomacy, it’s not that I want to change society.  I need to change it.  I need to change it for my son, because there will come a time when I will no longer be around to protect him.  In six years, he will be entering the walls of middle school.  One day, he will become an adult. 

For, you see, autistic people, especially kids and teens, are easy targets.  They are often unable to read the social cues of those around them.  They have difficulty sensing sarcasm, underhanded comments, and discerning between genuine and false friendships.  This makes middle school and high school, already such difficult places to navigate for the typical teen, the stuff of nightmares.

My son has such trust in others. 

There are times when his excitement and joy cause him to literally leap into the air.  He walks into the middle of conversations and begins talking to anyone in proximity about whatever is on his mind.  He doesn’t understand the social order of things.  Just last Friday, as we came into the cafeteria where the before school care meets, my kid ran right up to the fifth grade table and announced, “Guess what?  Today’s the teddy bear picnic!  Look at my bear!”  Right now, he’s young, and new to school, so his social differences are viewed as cute or shrugged off.  As he gets older, I know that kids will be less and less understanding and tolerant, unless they are taught to understand and respect these differences.  And, while we will continue to work with Ben on his social skills, I have a good feeling that his unique and larger than life personality will continue to attract attention as he moves up in school.  My mothering instinct worries that this will make him a target.

Because, as much as our society likes to say that it celebrates differences, the reality is that different is still something to tamp down and hide, and, at worst, ridicule and mock.

So, this is where I need your help.

If you have children, I need you to talk to them. 

Teach them to accept others who are different, but don’t stop there.

Teach them that kids with special needs are still regular kids like them, and not something to shy away from or fear.  Truly, we are more alike than different.

It is human nature to fear what we do not understand.  The problem is that fear breeds intolerance, hatred, and, ultimately, acts of cruelty.

I know that you cannot solve all of the world’s problems, but you can help your children to practice kindness, and kindness is the first step.  You can teach your children to listen to that inner voice that tells them when something is right or wrong, and to speak up when they see others behaving badly. 

We all want to believe that our schools are safe places.  We want to believe that the teachers are taking care of these things at school.  As a teacher myself, I know that my fellow educators are doing their very best to make school a safe learning environment, but teachers cannot be the only people who teach our children these lessons about tolerance and respect.  Schools have more and more academic expectations placed on them every year, which squeezes out the time needed to talk to kids about the hidden curriculum- the curriculum that teaches children how to be a good person in this world.  The curriculum that, at the end of the day, truly matters the most.  Please, don’t trust that the schools will take care of these conversations for you.  None of us want to believe that our child could be the child who instigates these heinous acts.  But, for every bully out there, there were countless more witnessing it happening and then sharing it on social media. 

Teach your children how to be advocates, not just for themselves, but also for the victims who may not even be aware of the wrong that is occurring.  I know that it is so hard to stand up against peers, but I know you have strong children, my friends. I know that as your children grow up, they will help stand up for my son and those like him when the time comes.

And, as one last request, I ask you to serve as an example to your children and to others.  There was a time when I might have laughed when someone made a joke at the expense of a person whose behavior was a little….different.  Let me tell you, when your child gets diagnosed with a disability, those jokes suddenly are no longer funny.  Our society is quick to push aside those who are weak and who do not conform.  Show your children where your values truly lie by modeling those behaviors of acceptance.

This summer while I was in Indiana I attended my parents’ church.  As I stood and sang with the congregation, I noticed an adult woman with Down’s Syndrome worshipping in the front row, her arms swaying to the music.  She was clearly attending church on her own, but I could tell that she did not mind being by herself.  She clearly seemed to be enjoying her worship experience.  Before my son’s autism diagnosis, I might have barely taken note of her, but as I watched her from a few rows behind, I thought about all of the people who must have come into her life over the years to help her to develop into the confident and independent adult that she was on that day.  My heart swelled with hope for the future that is also possible for my son.  And then, after the service, I watched as my father stopped to converse with her, and I was pleasantly surprised to realize that they were friends.  Parents can be powerful examples to their children. 

I know that you are already teaching your children these lessons of kindness and respect.  I see examples of it every day.  Recently, my son was invited to a birthday party by one of the little girls in his class. I was apprehensive about him going, but it turned out that he had an amazing time. It was a painting party, and the birthday girl wanted Ben to sit next to her.  I realized that Ben would be sharing a paint set with the birthday girl, and I watched the events unfold with apprehension.  My son, who is the type of artist that values messy exploration and color mixing, was sharing with a child who obviously valued a neat, pristine product.   However, she never once complained when her pink paint became sloshed with grays and greens.  She marveled with delight at Ben’s creation, a “pirate jungle mask” and never once questioned his artistic approach.  Then, a few days later, I saw this post on her Mom's Facebook page. The mom had posted an article on her Facebook wall about understanding disabilities. Above the link, the mom wrote this comment: "I hope that my children will grow up seeing all of the abilities in people, not their "disabilities".  Loving them for them and not caring what the others say, but continuing to believe in what they know is true and speak up when needed."

Tonight, as Ben was brushing his teeth, he told me that the little girl is his friend.  When I asked him why she was his friend, he answered, “Because…she is super kind.”

There is evil in this world, but there is kindness too.

We are stronger than we realize, if we stand together in this.

I am counting on you, my friends, to stand with me. 

To stand for Ben, and for countless other kids like him, whose differences can be gifts if we let them be.

I need you, my friends, because I cannot do this alone.

Editor's Note:
An update to the ice bucket challenge story.  One brave young man did stand up and call out those who initiated that hideous prank.  Read the story on fellow blogger Full Spectrum Momma's page here.