Saturday, August 30, 2014

A Letter to a Special Needs Kindergarten Mom

This photo was taken by a colleague who works at Ben's school.  Ben and his best friend are walking to class together for the first time on their own.  Little did they know, she is following close behind.  I am so grateful for all of those who watch out for my child every day while he is at school!

Dear New Kindergarten Mom,

Today was the first day of school.

I’m not your son’s teacher, but I work here at your son’s school.

The hallways were packed today, crowded with parents and students scurrying by, eager to find their classrooms, teachers, and friends.

And, through the crowds, I spotted you.

I saw you walking slowly down the hallway towards the kindergarten classes. 

I saw the way your little boy was clinging to your hand, brand new backpack looming huge and heavy on his tiny little shoulders.

You approached me to find your son's teacher.  I knelt down next to your little guy and asked him for his name.  I saw how he buried his head into your side and refused to answer me.  Or perhaps he could not answer.  I could not tell, but either way, I smiled at you to let you know that it did not bother me, and to let you know he would be fine.

This is my thirteenth first day of school as an educator. 

Six years as a classroom teacher. 

Seven years as a literacy coach.   

The fifth grade students from my first year of teaching have graduated from high school.  Some have children of their own.  

I have seen many first days of school come and go.

But, this year is different for me. 

My heart tugs for your son in a way that it never has before.  I’ve always loved and cared for the children who walk through these school doors, but today I feel deep empathy for you and for your son.  Because, less than an hour before you walked through these doors, I was that mom, dropping off my own little boy for his first day of kindergarten at a different school just a few minutes down the road.

And so, for the first time in thirteen years, I asked you a question that I never thought to ask before.  I asked you, “How’s it going, Mom?”

Because, for the first time in thirteen years, I really saw that worry on your face. 

I saw the internal struggle that waged inside you, between holding your child safe and close beside you, and letting him go off into the big, scary world for the first time.  You and I both knew what had to happen today.  We knew you had to let go.

And so you took a deep, shaky breath.  You spoke to me of your concerns for your child.  You told me that he has difficulty communicating with others.  You told me of his IEP.  You told me that he sometimes has trouble sitting still, transitioning from place to place, and, most of all, of his shy and reserved nature.  You worry about his ability to convey his needs to an adult and to reach out and make friends.  As I assured you of the wonderful teachers and programs available for your son at the school, I saw your shoulders relax a bit.  I know how important his care is to you.

I collected your information on my clipboard for his teacher’s class.  I made sure we had your direct phone number.  I checked that he had a bracelet on his backpack that indicated how he was getting home at the end of the day.  You told me that he was going to ride the bus by himself for the first time.  I could feel the unspoken worry within that statement.  I imagined how my little boy would do if he had to navigate on a bus this afternoon by himself.

And so, I made you a promise.

I promised you that I would check on your boy during the day. 

I promised you that I would find him at dismissal and make sure that he got on that bus.

I promised you this because I knew that you could not do it yourself.  I hoped you would be able to relax knowing that there was at least one adult at school today who was watching out for your little guy, a child who required extra support. 

I promised you this because, while I would not be able to be there for my own son at his school, I could be there for yours. 

I promised you this because there were those at my son’s school who had already made the same promise to me.

You asked me if you could stay a little longer with your son, to sit next to him in the hallway outside his classroom door, to drop off the bags of school supplies to his teacher and ask her a few questions.  I pointed you towards his teacher’s door and wished you well.  I knew how much you needed to hear that reassurance from her that she would take care of him today and every day.  You needed her to understand that he would have more special considerations than most children walking through her classroom door.  You needed to hear that not only would she help to accommodate him, but that she could find it in her heart to do so without annoyance or resentment of the extra work and time he might cause her.  That she would see him as a gift and not a burden. 

I want to tell you, Momma, that I kept my promise to you today. 

I checked on your little guy several times.  I peeked on his class while his teacher was reading a book out loud.  It’s called “The Kissing Hand,” and it’s about the love that a mother has for her son.  In the story, the mother kisses her child’s hand on the first day of school, and she tells him that that kiss will stay with him all through the day.  And, even though she isn’t there with him while he is at school, her love will be with him always.  All the children were gathered around the teacher on the carpet, and your little guy sat up close to her, right by her feet.  He was gazing out the window as her rhythmic voice flowed through the quiet room, but his teacher did not mind that he did not look at her with rapt attention like all the other children.  She and I both knew that he was listening.

I found him in the cafeteria at lunch.  I helped his little hands to reach the tray.  I took extra time to explain his meal choices to him.  And, as his classmates started jostling him in line because he was taking too long, and he started to melt down, I gently guided him to a quiet corner.  I taught him how to breathe in through his nose like he was smelling a flower, and out like he was blowing a candle.  When he was calm, he told me that he missed you.  Then, we walked through the now quiet lunch line together at his own pace.  I found him a seat at a table next to a friendly looking little boy.   

The child looked over and asked, “Why is he crying?” 

“He’s sad because he’s thinking about his mommy,” I told him. 

“Don’t worry,” the friend told your son.  “Everyone gets sad sometimes.  I miss my mommy too.” 

And then, as I opened his ketchup packs for his chicken nuggets, I told your son about what he would do during the rest of his school day.  I walked him through his afternoon, step by step, just as I do for my own son when he gets anxious.  I promised him that he would see you soon.

At the end of the school day, I found your child once again in the hallway.  I saw his anxiety growing as the masses of children started congregating around him.  I took him by the hand and guided him to the spot where he would wait for his bus.  I showed him how to find bus sign with the color that matched the color on the band of his backpack.  I made sure he walked up those steps onto that yellow bus, and I marveled at how small he was.  I swear they get smaller every year.  I made sure a caring fifth grade girl who was also on his bus would watch out for him, to make sure that he got off on the right stop, the stop where you would be waiting.

After all the children had gotten into their buses and cars, and the hallways were once again quiet, I made my way back to my office.  I checked my phone and saw that I had a picture message waiting in my inbox.  It was from a colleague who works at my son’s school, who also happens to be the mom of my son’s best friend.  I opened the attachment to see a picture of Ben and his friend, smiling ear to ear as they ate their lunch in the cafeteria.

So I say this to you, kindergarten Momma.  It’s hard to let go of our little guys, especially knowing the extra challenges that they face, but try not to worry too much.  Someone is always there, watching out for him.  My son once said that he is strong enough to be in kindergarten.  And so is yours.   This year, he will learn.  He will grow.  He will thrive.


A teacher at your son's school

Sunday, August 24, 2014

Autism Acceptance: A Parent’s Perspective

This is a picture of Ben skipping stones in the creek.  I love this picture because it captures his zeal for life.

A couple of weeks ago, I wrote a post about my journey towards accepting my son’s autism.  You can read it hereIn the post, I talked about how parents of autistic children go through a five-step grieving process leading towards acceptance.  What many don’t realize, however, is that they are not grieving because their child is autistic.  They are grieving for the loss of the child they expected to have.

As you can imagine, my post stirred up different emotions in different people.  For some, my words resonated with them, but for others, acceptance seemed like too bitter a pill to swallow.  One autism Daddy commented on a parenting forum that acceptance is not a place that he believes he’ll ever get to.  He said that if he could rip the autism out of his son, he would.  I know he isn’t the only one who feels this way.  He is reacting with anger towards the autism because it is what he knows to blame. 

What I know now that I didn’t know then is that it’s not about the autism. 

The autism is the wiring in a person’s brain.

It changes the individual’s filters and perceptions of the world. 

For some, the wiring causes mild changes in processing, and for others, it is more pronounced, but regardless, the wiring cannot be changed.  The autism cannot be separated from the individual. 

The meltdowns, the sensory reactions, the supremely picky eating, and in some cases the seizures, the sleepless nights….none of that is the autism.  Yes, in many cases the autism has a close connection to these things, but these behaviors and manifestations are something altogether separate and apart from the autism.  I think that’s an important distinction to understand.

I’ve come to realize that you cannot separate the autism from the person who is autistic. 

So, when someone says that they would take away their child’s autism if they could, this is essentially tantamount to saying that they want to take away the child they currently have and replace him with a different child completely.  And, for an autistic individual, this is a heartbreaking to hear. 

However, this post is about acceptance. 

It took me a good year to reach a place where I accepted Ben’s autism as a part of who he is.

I think it’s important to truly understand acceptance.

This is what acceptance means to me.

Acceptance is more than just awareness. 

Awareness is important, but we can be aware of something without accepting it.

Acceptance isn’t giving in nor is it resignation.  It’s not hanging our heads in defeat.  It’s not saying, “I give up.” 

Just because I accept and even embrace Ben’s autism does not mean that I’ve stopped providing him with therapies and supports.  On the contrary.  They are necessary and important.  He needs to learn to navigate within in a world that is not naturally set up for people like him.   

At the same time, I don’t expect Ben to change the person who he is to fit society’s definition of what they want him to be.  Instead, I want Ben to learn to find his place in this world as a happy, caring, productive member of society, as comfortable as possible in his own skin.  Yet, I do expect him to be a kind, considerate, and respectful person, and I expect others to extend him the same courtesy.

Acceptance is a call to action. 

It is a realization that, now that 1 in 68 children are diagnosed with autism, it is actually a subgroup of our population.  It is a subgroup whose needs cannot be marginalized nor ignored.  These children are growing into adults who will need housing, care, and employment opportunities.  It’s not as if once an autistic child becomes an adult, the autism magically goes away.  

Acceptance is recognizing the unique gifts inherent within each individual, nurturing these gifts, and ultimately tapping into these strengths. 

Acceptance is presuming competence. 

This means that, even if an individual may not show that he or she understands something, we still must assume that they are listening and are capable of understanding.   We may discover days, weeks, months, or even years later just how deeply they did comprehend what was happening.  And also, just because a person cannot speak does not mean that they have nothing to say.  And, just because a person cannot speak does not mean that they are incapable of communicating.

Acceptance is respect. 

It is respecting the individual’s need for space, for thinking time before responding, and for different forms of expression.  It is respecting that the outside world can often be overwhelming, and offering up patience, kindness, and support when needed.  

Acceptance is listening to varying points of view.

When we talk about acceptance, we almost exclusively talk about autism acceptance.  This is an important conversation, because we still have a long way to come as a society in regards to autism awareness, let alone acceptance.

However, when we talk about acceptance, we cannot forget to talk about accepting not just autism itself, but also accepting the fact that those within the autism community are going to have different viewpoints than ours, because they have different experiences with autism than we do.  We cannot presume to know what it feels like to walk in their shoes. 

This is different from agreeing with their point of view. 

To quote Stephen Covey, we must seek first to understand, then to be understood. 

Acceptance is finding common ground in order to work together, rather than fighting in opposition of one another.  We may disagree, but if we would only listen to one another, we may find that we have more in common than we at first realized.

And, finally, acceptance is not a place that you suddenly arrive at one day.

It is a daily reaffirmation of what is truly important.

It is celebrating the person who is here, rather than trying to change him into the person you want him to be.

Some days will be easier than others.

What does acceptance mean to you?

Friday, August 15, 2014

Acceptance Comes in Five Stages

This is a hastily snapped cellphone picture of my house this morning.  It does little to capture the beauty that was the sunrise this morning.  Please read to find about why this sunrise meant the world to me.
In his famous article, "Don't Mourn For Us", autistic adult Jim Sinclair explained the grieving process that parents go through after an autism diagnosis like this, "Most of the grieving parents do is over the non-occurrence of the expected relationship with the expected normal child.  This grief is very real, and it needs to be expected and worked through so people can get on with their lives---but it has nothing to do with autism....It isn't about autism, it's about shattered expectations."

Dear Readers,

This blog is a very long one, but stay with me to the end.  

I promise it's worth it.

It’s 5 am and I just woke with a start to loud, booming thunder outside.  My mind is racing anyway, so I’ve decided to sit down and try to put into words what has been on my mind.  

Ben is starting kindergarten in a week.  I started at a new school this week.  So many changes have happened this year, and one thing is for certain.  

I am not the same person that I was this time a year before.  But let me back up to the beginning.

This week was Open House week.  Meet the teacher week.  Since I work during Open House night, and I’m fortunate enough to be a teacher, I found a time to meet with Ben’s teacher the day before the actual Open House.  We ended up talking for over an hour about Ben’s strengths and his unique needs.  We brainstormed potential challenges that might arise in the classroom and interventions that have worked for him in the past.  I wanted to make sure that she knew that, even though we are professional colleagues, she can feel free to be real and honest with me about what’s happening with him.  I want kindergarten to be a great experience for him, her, and for the other students in the class as well.  But I do know the reality.  There will most likely be challenges along the way.

Then Ben’s teacher and I switched gears and spoke as two colleagues for a moment.  We got to talking about how hard it is to have that conversation with parents sometimes.  Gently telling a parent that their kid has some differences.  Gently suggesting that their child may need extra supports and services.  This is often so hard for parents to hear. I shared with her something that I’ve shared with many other people, and now I’m going to share with you. 

I believe that after a parent finds out that their child has a disability, they go through five stages.

Someone once told me that we all must go through these five stages for pretty much any event in our lives that can potentially cause us pain, whether it is losing a job or divorcing a spouse or finding out your child has a disability or a unique health condition.

Now, let me start by saying I am in no means suggesting that a child having a disability is as life altering as the death of a loved one, or even having a loved one go through the process of dealing with a disease such as cancer.  I want to make it very clear that I do not view Ben’s autism as a tragedy or a devastation to our life.  I don’t even view it as a disease, but that’s a topic for another blog. 

In fact, anyone who has read my blog knows that I believe that Ben has many unique strengths and gifts because of his autism. 

But, how I feel now is very different from how I felt a year ago. 

We all must pass through the stages. 

There is no skipping steps along the way.

I believe anyone facing a major life challenge goes through these stages leading towards acceptance. 

We all work through the stages at different rates. 

For some, it may take a few months to pass through all of the steps.

For some (like me), it may take a year.   To read more that first year for me, click here

For some, after years and years, they are still somewhere in the process. 

And so, with that said, I give you the five stages on the journey to acceptance, as seen through the lens of my own personal experience.  I do not pretend to know how these stages felt for you or anyone else, even my own husband.  I can only speak for myself.

Sunday, August 10, 2014

Theory of Mind in Two Words or Less...

These pictures are screen shots of a movie where Ben dances to the song "Gangnam Style" (see television behind him).  I included these shots because they always make me smile and, well, they are awesome!

Theory of mind has been described as a person’s inability to understand and identify the thoughts, feelings, and intentions of others.  Some believe that autistic individuals do not develop theory of mind and therefore lack empathy.

This week I start back to school.  The teachers return a week before the students so that we can prepare our classes and attend professional development trainings.  My parents, wonderful people that they are, have flown across the country to spend a week at a condo on the beach with Ben, while my husband and I work.  Keep in mind, Ben and I just spent the last month at their home in Indiana, and, most recently, Ben spent the last week at their house without me.  My parents and Ben just flew back to Florida yesterday.  My parents then dropped Ben off for one night at home while they set up the condo, and the next evening we headed for dinner by the beach, with the plan being to leave Ben for a week at the beach house.  Are you following this?   We were more than a little anxious about how he would handle yet another change to his routine.  How would he adjust to being away from the comforts of home, after just being reunited with all of his toys and games (not to mention Mommy and Daddy)?   My parents and I discussed the transition at length and I was prepared, if necessary, to spend the night at the condo myself to make the process smoother.

After dinner, the time had come to say our goodbyes.  My husband prepared Ben for our departure. 

He explained to Ben, “Mommy and Daddy have to go back to work this week, but you get to stay and have lots of fun at the condo.  You get to go to the pool and play at the beach.  We’ll be at work, but we’ll see you for dinner on Wednesday.”

Then came time for the hugs goodbye.

And we all watched and waited, holding our breaths to see how Ben would react.

After hugging by husband goodbye, Ben leaned in to offer me a hug. 

I felt a lump forming in my throat.  I tried my best to keep it light.

“Have fun this week, Buddy.  I’ll see you soon,” I said, tousling his hair.

Then, as he pulled away, his eyes met mine briefly and he said, “Sorry, Mommy.”

Sorry, Mommy.

It took me a minute to process those two simple words, but when I did, they completely blew me away.  Here is my translation of what Ben meant by those two huge, power packed words:  “I’m really excited to get to spend a week at the condo doing my favorite things with grandparents whom I love.  I always have fun with them, and I feel comfortable here.  I feel sorry for you that you have to miss out because you have to go back to work.  I wish you could be with me too, sharing this new adventure, but I understand.  You are a grown up and have to work.  Sorry, Mommy.” 

And so the score stands:

Ben- 1, Theory of Mind- O

Tuesday, August 5, 2014

How Does Your Garden Grow? #sensorybloghop

Ben inspecting the tomato plants in Nana and Papa's garden.

I try not to limit my son based on my perceptions of what he can and cannot handle, but…despite my best efforts…I do.  More often than I would care to admit.

And...time and kid proves me wrong, exceeding my expectations of his capabilities.

As parents it’s only natural to expose our children to our personal areas of interest.

Sports fans take their children to baseball games.  Athletic parents take their kids rock climbing and kayaking.  Nature lovers take their kids…well…into nature.

My husband and I are not what you would call athletes or nature lovers.  My husband is a computer whiz, so he is passing on his love of technology to Ben.  And me, well, I’m sharing my love of books and reading.  I’m delighted that he is learning to read independently and sees himself as a writer, proudly placing the books he has written alongside those by his favorite authors.  

Luckily, our kid also has the opportunity to learn from family members with a variety of interests and talents, many that our different from ours. 

During the past month, Ben and I have spent our summer vacation visiting my childhood home up north.  As a teacher, I’m fortunate that we have time to spend a few weeks of our summer with family.  Since we live half a country away, I count myself blessed to have this time to reconnect with family.

So much of our time this summer was spent out in nature.

Keep in mind, I am not a nature girl.

I have a brown thumb, I hate the summer heat, and I almost always get eaten alive by mosquitoes.  My husband, if possible, hates the outdoors even more than I do. 

This summer, however, we discovered something surprising.

Our kid loves nature.