Day 27: Acceptance is Unconditional

Ben getting his Bad Kitty book signed by his favorite author, Nick Bruel.  Ben's autism doesn't stop him from living his life every day.

Today Ben and I took our first trip of the season to the neighborhood pool.

There were several families enjoying the water, so we chose the side of the pool that was the least crowded.  There was just one family – a mom, a dad, and their little boy and girl.  The boy looked to be a little bit younger than Ben.  He wore his arm bands and splashed on the steps by the edge of the water.

When we swam near the family, the mom said brightly to her son, “Look, a little boy your age.  Why don’t you say hello!”

The little boy stared off into the distance, but Ben obliged and said, “Hi, I'm Ben!” 

Still, no response from the other little guy.  His whole body was turned towards the fence, and he was staring at the wooden owl that was supposed to scare the other birds away.

The mom tried to engage again, “Our new friend is talking to you.  Can you tell him your name?” 

Still, no response.

“He’s only starting to have conversations with others,” the mom said apologetically.  She told me that her son was five. 

The familiar flash of recognition registered in my mind, especially as I watched the boy flapping his hands and running off moments later, his mom chasing behind as he ran from the pool area. 

The mom was pretty busy after that, chasing after her son, encouraging him to try to swim in the water, so we never had the opportunity to talk again.  If we had, I may have asked her more about the Pre-K class that she said her son attends.  I may have gently prodded to see if she recognized what I could not help but see in a few short minutes of time with him- characteristics of the spectrum.  I am not a doctor and so I would not have offered my opinion of a diagnosis to her, but if she had asked, I would have pointed her in the direction of professionals who could tell her more.

It has been nearly two years since we received Ben’s diagnosis.  I’ve grown a lot in my understanding of autism but, more importantly, in my understanding of how to be a mom to Ben. 

Here are a few things that I would have told that mom if she had asked about autism- and I wish someone had told me two years ago when I was first learning what it meant for our family.

1)   Autism is not the end of the world.

Too often, when a parent receives the autism diagnosis, they are made to feel like the world is coming to an end for their child.  They paint the picture of a bleak future.  Some parents have been told that their child will never graduate from high school, never go to the prom, never live on their own.  Many, many autistic individuals have proven these so-called experts wrong.  Don’t listen to the doom and gloom prophesies.  Yes, the road is a hard one.  But no one knows what the future will hold for your child.  Don’t limit their possibilities- they are capable of far more than we can imagine.

2)   Autism is not going away…and that’s okay

Autism is a pervasive developmental disorder.  This means that it impacts every aspect of a person.  It is impossible to separate the autism from the individual, much like a person’s hair color or eye color.  You can change your hair and eye color, but the original color will still remain underneath.  In much the same way, a child may appear to “change” through therapy, but they will always be autistic.  Some people say that they hate their child’s autism, and, while I understand where the anger is coming from, we must be so careful with our words, because our child will hear this as “we hate him” and they will learn to feel like a burden.  I choose to look for the many strengths that Ben’s autism brings him, including his amazing memory, his intense focus on his interests, his love of numbers, and his unique perspective on the world.  I love him for the person who he is, autism and all!  We work through the tough parts and we seek to make the challenges less- but, through it all, I make sure that Ben knows that he is loved, no matter what.

3)   Autism is a spectrum

There is a saying that when you’ve met one autistic person, you’ve met one autistic person.  Before Ben’s diagnosis, I knew very little about autism.  Like most people in my age group, I associated autism with the movie Rain Man, because that was my only real reference point.  Even as a teacher, I never encountered a child on the spectrum in my classroom.  I think this was why it took awhile for me to recognize the characteristics in my own son.  They presented in different ways then I had heard about, and so it was easy to dismiss them.  Now, I am much more adept at recognizing the signs in others and I realize that there are many, many people in this world on the spectrum, children and adults alike, some diagnosed and some undiagnosed. 

4)   Autism alone does not define my son

Ben is so much more than his autism diagnosis.  One thing that I understood early on is that Ben is still the same kid that he was before he received the diagnosis.  (If anything, he's even more awesome now!) The reason that we agreed to the diagnosis was to help define his unique strengths and challenges so that those who work with him would have an understanding of the reasons for his characteristics and behaviors.  It allows us to set goals for him that can be addressed through specific therapies and interventions.  Some parents choose to not put the label on their child because they are afraid that society will treat their child differently.  Others simply refuse to accept that their child could be autistic.  However, the fact remains that if a person is on the spectrum, they are autistic whether you choose to formally add the label or not.  And, as such, they will most likely have behaviors that set them apart as different anyway.  I would rather educate people and help them understand why Ben acts a certain way, rather than have him labeled a “behavior problem” or an “odd kid”.  Sadly, there have been times when he has been treated differently when people learned about his autism, but it has also been a great learning experience for many people.  He has played soccer, taken part in theater classes, attended swimming lessons, flown on airplanes, cruised the Bahamas, and done many, many other things that many adults haven’t even experienced.  In short, he’s living a happy, full life.  Autism brings its own particular challenges, but it isn’t stopping him from living.

5)   Keep the worries in check

I’m learning from my other mom friends that worrying comes with the territory of parenthood.  Moms of special needs kids have their own unique set of worries.  We worry about our child succeeding at school.  We worry about bullies and if our kid will have friends.  We worry about our child’s future as a grown up.  We even worry about who will take care of our child after we are gone.  I have learned that the worry will consume me if I let it.  Thankfully, I’ve met some great moms who also have kids with special needs.  They are great listeners and can offer advice when I need it because they truly get it.  They have been down this road too.  When I feel the worries setting in, I turn to them, and then I get busy living my life, spending time with my amazing kid.  For, as one of my mom friends says, our kids remind us that they are awesome no matter what!

Day 26: Acceptance is Positive Change

Acceptance is growing.

I saw examples of it tonight in simple acts of human kindness.

Tonight was our city’s parade.  This isn’t just any parade.  Thousands flock downtown to see it.  Bridges and streets shut down for hours.  The parade itself lasts for close to two hours.  It is massive to a small town girl like me. 

We went with a group of friends.  There were lots of children in the group, including our friend’s little boy who has Down’s Syndrome, and another little boy who goes to Ben’s school who is in a wheelchair. 

When the parade began the three boys lined up along the sidewalk, mixed in the throngs of people.  Two boys with a visible disability and one boy whose disability is hidden.  All three boys were treated with love, respect, and kindness throughout the evening. 

My son, who usually has to be prodded to interact with others, quickly learned that waving and yelling, “Hi!” would often results in beads, candy, and other trinkets being tossed this way.  So, for the next two hours, he waved excitedly and had a blast filling his bag with more and more goodies.  He approached the people passing by in the parade.  He gave out high fives and fist pumps.  He even chatted away with the people next to us, comparing his growing bead collection with theirs. 

As I watched Ben having a great time running up and down the sidewalk, retrieving the beads, I thought of the little boy in the wheelchair who had to watch the action from the sidelines.  The loud noises from the fire trucks and the blaring music were obviously bothering him, as he held his hands to his ears for most of the evening.  Many, many of the people passing by in the floats noticed him and took the time to come over and give him the beads and trinkets. 

At first, Ben was completely engrossed in acquiring beads for himself.  But it only took me whispering in his ear once about sharing, and soon enough, he was running and putting beads around his friends’ necks as well. 

I was proud that Ben never became upset if he didn’t catch a bead tossed his way or if the people passed over him and tossed the beads to someone else.   

His energy and optimism never wavered.  Even if he was passed over, he still jumped up and down, waved his hands, yelling “hi” as he raced towards the beads that were flying through the air.

“I’m rich!” he shouted with delight.

“Yes,” our friend’s mom said.  “You are rich, indeed!”

Day 25: Acceptance is a New View

This picture illustrates the pure awesomeness that is Ben.  This picture was taken close to Halloween.  He's wearing a scary wolf mask while holding his special stuffed animal Stinky.

I've written here before about how much my perspective has changed since I've started learning about autism and the sensory integration.  It has truly changed my views about behavior and the way all of us interact with the world.

For today's post I'm linking to a former post I've written about sensory processing and what it means to me. I hope you take the time to read:

Viewing the World Through Sensory Lenses

Day 24: Acceptance Is Waiting Before Rushing In

The other morning I was dropping Ben off in the before care program at school, as I do every day.

The cafeteria was already filled with about fifty children, all sitting at their grade levels tables.   The kids were busily occupying themselves with educational toys and games while they waited for the breakfast line to open.

Ben knows the routine well.

He headed over to the rolling carts to select his favorite option- the tub of Legos. 

I hurried to the parent table to sign his name in the drop off binder.  I was flipping through the pages to find his name when I heard---

Crash!

The animated chatter in the cafeteria momentarily stopped.

I glanced over to see Legos scattered all over the floor.  The tub must have slipped from his hand as he removed it from the cart.

My first impulse was to rush over, to help him clean the mess.  But a little voice inside of me said, “Wait.”

The magnitude of what happened next probably went unnoticed by everyone in that room except me. 

What happened next was huge because….something new occurred.

There was no crying, no wailing, nor despair.

There were no frantic calls for help.

This thing that happened- these blocks falling to the floor- this event that would have become a 911 emergency problem in the past- did not faze Ben for a moment.

He immediately began retrieving the fallen Legos and scooping them into the bucket.  He worked quickly and efficiently, without a word to anyone.

I heard what I thought was a snicker and I swung my head around to the table of nearby fifth grade boys.  I fixed my meanest teacher glare on them and dared them to make another sound.  They wisely didn’t.

A moment later Ben had the toys in the box again and headed for his table.  He sat down and began quietly building his morning’s creation.  A moment later his buddy can running into the room and plopped down next to him.  They began chatting about what they were going to design and how tall they thought they could get the structure.

We talk all the time about the need to develop flexibility and resiliency and independence in our children.

These goals that we work so hard to attain don’t suddenly arrive within our children one day in the distant future.

They are built in small, almost imperceptible steps, over time.

Moments like this are opportunities to learn these lessons if we give them space to work it through. 

And as I walked down the sidewalk to my car that morning, I couldn’t help but look back through the window one last time. 

Ben glanced up briefly from his work and waved a quick but cheerful goodbye.

Day 23: Acceptance is Sometimes Hard

Ben clinging to an assortment of stuffed animals.  He's holding on as if for dear life.

“Will there be toys in heaven?”  Ben asked me in the car this afternoon on the way home from school. 

His questions, as usual, are continuations of conversations we’ve had days, weeks, or months earlier.

“I don’t think so, buddy,” I told him.  “But I'm sure that there will be lots of fun things to do when you get there.”

“Then I will make toys,” he decided.  “Maybe I will make them out of the clouds.”

Ben’s toys are his most prized possessions.  Anyone who knows him at all also knows his favorite stuffed animal, aptly named Stinky.

He is a consummate collector.  When he was younger, he wanted every Thomas train that he could find.  Then, for a time, it was the Angry Birds plush animals.  Now, his latest craze are the Minecraft plush toys. 

Ben and I were cleaning the house this evening to prepare for his buddy Nikki's visit tomorrow.  I explained to Ben that he would need to share his toys, and he excitedly agreed.

As Ben cleaned his art table downstairs, I sifted through his box of sensory squishy balls upstairs, and set one aside for a third grader at my school.  The boy has been chewing his nails to the point of making them bleed.  I hoped hoping the squishy will be a good replacement behavior for him.

A few moments later, Ben wandered upstairs and spotted the squishy ball.  He hadn’t seen this ball in months but immediately began playing with it. 

“Darn!  I didn’t smuggle it out quickly enough,” I mentally chastised myself. 

I decided to wait and see if he lost interest in the toy.  He didn’t.

I tried a different approach.  “Ben, I was wondering if I could ask you a big boy favor?”

He was listening.

“There is a third grader at my school who really needs to borrow your squishy.  Can I let him use it for awhile.  You’re such a big boy now that you don’t even need this squishy anymore!”

Ben’s face was a mix of emotions.  “I will share it,” he said, but then he immediately began to cry.  I could tell he regretted his words.

“Ben, do you still need this squishy?” I asked him.

“I need it!”  he insisted.  “I need it but I want to share.”

We talked a little more about the squishy, about our friend the third grader, and about how many other sensory fidgets he has already.  But, in the end, I could tell that this particular one held a special place in his heart.  I'd forgotten that it was a gift from last year's OT.  I'd forgotten that it was the only one like it in his collection.  I had forgotten...but he hadn't.

“How about this?  How about you keep this squishy and I’ll talk to my OT friend at school and we’ll find the boy a squishy at school and tell him it’s from you.”

“That’s a good idea,” he agreed.

Giving up toys is hard.  Ben happily shares toys with his friends when they come to visit, as long as the toys are still in his sight.  The idea of a toy going away from him for an undetermined amount of time was simply more than he could take in that moment. 

We’re working on it.  Sometimes he can let toys go.  Recently we gave away several boxes of his old things “to the babies” and he accepted this without a hitch.  But today was not one of those days.

“Mommy, are you disappointed?”  he wanted to know.

“Ben, if you still need the squishy, I want you to keep it and use it.  Otherwise, it’s good to share it with someone else who needs it.   You know what your body needs, and when you’re ready to share it with someone else, I know you’ll tell me.”

But I was disappointed...a little.  And he knew it.

A few minutes later, we headed upstairs for books and bed.

On the way, Ben passed by the door to his playroom.  He noticed that in my cleaning frenzy, I had knocked a few of his interconnected tracks apart.  I paused to allow “The Trackmaster” to fix the tracks back into their interlocking places.  I knew that he wouldn’t be able to sleep knowing that the pieces weren’t connected.

I could worry about his compulsive need for the pieces to connect.

I could force him to repress these perfectionistic tendencies.

But I don't.

Instead, I think about my friend and co-worker who needs her special fancy pens to all face a certain way in their container on her desk.  

I know someone else who needs to mow his lawn with nice, straight lines. 

For me, the simple act of checking off things on my to-do list makes me feel a little bit more in control. 

We all have things we do to help ourselves stay calm and centered.

Ben is finding ways to maintain order in his often chaotic world.

He is learning the fine art of flexibility- but some days are easier than others.

Some days are harder for me, too.

And-good day or not- I will be there for him every step of the way.

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Being a parent of a child with special needs is not always easy.  Click here to read another mommy blogger's perspective on autism awareness.  -From Mommy Catharsis

Day 22: Acceptance is an Open Mind

In this picture, our server on the cruise ship is helping cut Ben's chicken.   This is a great example of someone who took service to the next level by forming a human connection with Ben.

I work in the field of education, and so every day I get to see learning happening firsthand.

One of my many roles is that of a change agent.  When change happens at our school, whether it is trying out new teaching techniques or learning a whole new curriculum, it’s my job to help teachers implement it in their classrooms.

I have learned firsthand that change isn’t easy and that it takes time.

Change is hard whether we’re teachers who are implementing a new curriculum or simply adults trying to understand and accept people who act and think differently than we do.

I’ve been called Pollyanna before. 

I’ve been called the eternal optimist, because I do believe that people generally make decisions based on what they believe is the right thing to do.

However, sometimes things get in the way.

It may be lack of education on a topic.

It may be lack of supports.

It may be fear of change or the unknown.

Whatever barrier prevents this change from occurring, I believe that open and honest dialogue can help us to move in the right direction.

I think that most people like to believe that they have an open mind.

Most people believe that they are tolerant and accepting of others.

However, the reality is that we still have such a long way to go in this world towards creating lasting change for those who do not fit the status quo.

So why is there such a gap between our beliefs (about tolerance, inclusion, acceptance, diversity….) and the reality of the current situation?

I believe a big reason for this gap exists in our minds.

We think we understand, so we don’t truly listen.

We think we are accepting, so we don’t look truly see those who are left marginalized.

We think we want change, until advocating for it becomes inconvenient or hard or unpopular.

We see the walls in our way- and so rather than think creatively, we stop trying to problem solve.

And so- where do we begin?

We begin with an open mind.

We begin by truly listening.  We listen to all points of view and weigh what we are hearing against our current reality.

We listen with the intent to understand- not waiting impatiently for our turn to speak- not thinking that we know better.

We seek out the experts in the field and listen to them.  We remember that the experts aren’t necessarily those with the advanced degrees but rather those who have lived and experienced these matters firsthand.

We humble ourselves to realize that we don’t have all the answers.

We allow ourselves to be in a position of vulnerability- in order to learn.

We admit when we need help and seek it in order to grow.

We do these things because we know that when we draw lines in the sand, we are causing division rather than growth.

We know that there is a time to stand our ground on what we know is right, but we do this with the understanding that fighting these battles can come at a steep price.

And so first we invite conversations that will lead to positive change.

We watch, we learn, and we listen.

Always with an open mind.