Thursday, April 30, 2015

Day 30: Acceptance Is A Process

I made it!

I wrote a blog post a day for the month of April, in honor of Autism Acceptance Month.

Thanks for those of you who took the time to read some or all of the posts this month.

I hope that by sharing our story, I’ve provided you with a new perspective or simply reassured you that you are not alone.

I hope that these posts can serve as a starting point for conversations that we all need to have about how embrace those who are different.

Thanks to those of you who know me in the real world and have said kind words about my blog.   It truly means a lot.

Some of you have called me brave and an amazing mom, but the truth is, I am no braver nor any more amazing than any other mom would be in my shoes.

What I’m doing is not extraordinary.  

The superhero to me is my son and those like him who find a way to navigate through this world every day. 

Words come fairly easy to me.  

Language flows from my brain to my mouth with little thought or effort on my part. (Sometimes I should perhaps put a little more thought and effort into the words that come from my mouth, but that's a different topic of discussion...)

My brain subconsciously filters out extraneous sensory information around me so that I can concentrate, focus, and live my life.  

None of this is true for my son.  

He has to work at these things and more every day.

Acceptance, however, is about celebrating the person for who they are. 

It is about recognizing and building upon strengths.

It is about respecting a person’s way of interacting with the world, even if it looks different from what we are used to seeing.

It’s about letting the person know that he is loved- no matter what.

Acceptance isn’t resignation or giving in.

It’s allowing the person to find wings and soar to new heights.

This blog may be written by me, but it’s not about me.

This is his story.

I just have the honor of telling it to you in the best way that I can.

Remember- his story is but one of the millions of stories out there- each one unique in its own right.

I believe that by telling our stories, we can help each other learn and grow. 

Understanding leads to true acceptance for all.

Wednesday, April 29, 2015

Day 29: Acceptance is Hopeful

This is a picture of Ben from about four years ago, when he was just a toddler.  It is true- time passes by in a flash!
Tonight at bedtime, Ben said his prayers, as we do every night.

It’s the last step in our evening routine.

His prayers are usually brief, but tonight he had a lot to say:

God, please let Mom pick me up early (from school),
And be a big kid,
And be strong,
And be good,
And be cool,
And let me sleep long,
In the name of Jesus Christ,

Ben took his time, pausing between his words as he often does when he communicates.

He searched his mind for just the right phrase, as an artist would choose a color from his palate with care.

Each pause allowed me a moment to reflect on what he was saying.

God, please let Mom pick me up early

Ben puts in long days at school.  He’s a teacher’s kid, so he gets dropped off in the before care program about an hour before the school day begins and he stays an hour or two after the school day ends. 

So, when Ben is asking for Mom to pick him up early, he’s asking for Mom to pick him up an hour after the school day ends rather than two or three hours later.

When I was in kindergarten, I went to school for a half day.  My mom picked me up at lunch.  Ben has been going to "school" all day since before he could walk.

I hear Ben's prayer for an early day, but I know the reality is that tomorrow my meetings will last until 4 pm, and I'll be on the other side of town.  I know he'll understand.  I know he'll be well taken care of until I can come and get him.  But still, I wish I could let him have his early day.

And be a big kid,

Ben has been talking a lot lately about being a big kid.

He knows that soon he will be in first grade, and he asks me often if he will look different when he’s a first grader.

I tell him that being a big kid is more about how a person acts then how a person looks.

And so he tries to act grown up.

He tells me with sorrow in his voice that the older students say that he is a little kid.

I tell him that one day he will be bigger and older, but, for now, it's pretty fun to be six.

I tell him this, but I know that being six is actually a lot of hard work these days.

And be strong,

Big and strong go hand and hand.

Ben has been trying to eat healthy food in the hopes of making himself stronger.

Today he ate two bowls of salad and two bowls of carrots, which is an unheard of amounts of veggies for him.

He asked me if carrots are a grown up vegetable.

He made me feel his muscles.

I know that all little boys want to be big and strong like superheroes, but I can’t help but wonder why, all of a sudden, it is so important to him to become strong.

And be good,

Ben desperately wants to please the grownups in his life.

I hear him quoting phrases from school while he works on his homework, “Less talking, more working…”

He wants to know that he is doing the right thing.

When he thinks he has disappointed someone, he is crushed.

Somehow his behavior has become intertwined with his concept of self-worth.

I'm afraid he's beginning to believe that his good just isn't good enough.

And be cool,

I didn’t even know until a few days ago that he even knew what the word “cool” meant, outside the context of weather.

I’ve noticed he’s started using the phrase “That’s cool” when he talks to his friends.

He’s become more particular about what he wears to school.

After his haircut on Sunday, he asked, “Do I look cool, Mom?”

Apparently popularity begins at six.

As his mom, I think his coolness factor is through the roof, but I know that the “big kids” at his school most likely see it differently.

I worry about this impact on the little boy who wants to grow up way too fast.

I worry about this little boy who has difficulty with peer interactions and noticing social cues.

I didn’t think all this would begin so soon….

And let me sleep long,

Lately I’ve had to go upstairs and wake him up in the morning so we can make it to school on time.

His first question is always “How many minutes until we leave?”

It’s not that he wants to leave.  He wants to know how long he has to enjoy the sanctuary of our house before he must face the world.

This used to be a little boy who would bounce out of bed before the crack of dawn so he wouldn’t miss a minute of his day.

Now he wants me to let him sleep long.

In the name of Jesus Christ,

As he opened his eyes from his prayer, Ben said, “I talked to God for a long time.  Like ten minutes!”

“You did tell God a lot of things,” I agreed.

As I kissed him on the forehead and tucked him under the covers, he leaned in and said, “I love you a LOT, Mom.  A TON!”

“I love you too, buddy.  So much!” I said as I hugged him once more.  I quietly slipped away, shutting his door behind me.

I stood for a moment outside his door, lingering over his words, and then said a quick prayer of my own and I walked down the stairs and turned off the lights.

Tuesday, April 28, 2015

Day 28: Acceptance is not Awareness

*Today I'm linking with a fellow blogger Jennifer, aka Full Spectrum Momma, on today's topic.  You can check it out here.  

The month of April nearing its end.

Autism Awareness Month is winding down.

For many, this is a great relief.


Because awareness is very different from acceptance.

Are these words so really so different?

In a word, yes.

The distinction is quite important because the Autism Awareness movement, sponsored by organizations such as Autism Speaks, has a very particular agenda.

This month has morphed over the years into a publicity campaign designed to create deep rooted associations between autism and tragedy, devastation, epidemic, and fear.

We see messages like these on our Facebook pages:

Or this:

No smiles for either of you...

Or this one on billboards or buses driving by on the streets:

Some of you may not see anything wrong with these ads. 

You may view them as public service announcements, calling for an end to a devastating disease that ruins the lives of many.

Sadly, this has become the popular view of what autism is.

Sadly, these are some of the first messages that a parent sees when their precious child is diagnosed with autism.  They are among the first hits on a simple Google search of the word "autism".

The video “I am Autism” produced by Autism Speaks portrays Autism as the bogeyman who steals our children away.

This is why awareness campaigns concern me greatly.

Because, unlike cancer and diabetes, autism is not a life-threatening disease.

Autism is not something that person "gets," as the ad above implies in a sadistically humorous parody of the "Got Milk" campaign.

I don't seek to minimize the struggles that many autistic individuals face every day.  These are very real.

Autistic individuals may live with challenges, but they also have many wonderful traits that can enrich their lives.  These strengths rarely become part of the conversation unless we are discussing prodigies or savants or those who have "overcome" their autism.

Contrary to popular belief, autism is not something that can be "cured".

Ask an autistic adult and they will tell you that autism is a part of who they are.  It is an integral part of their identity, both the challenges and the strengths.  

And so, when ads such as the one above call for an end of autism, these adults see this as a call to wipe out people like themselves. 

Ads like this paint a bleak picture of the futures for children such as mine.  This leads to fear and devastation in the hearts of parents, but, even worse, it leads to feelings of worthlessness within the autistic person.  Who wants to be viewed as a burden to society or something that needs to be eliminated? 

Which leads me to the concept of ableism.

I had never even heard of the word ableism until about a year ago.

I had to look it up in the dictionary, and this is what I found:

Ableism is a form of discrimination against people with disabilities. 

It is the belief, whether conscious or unconscious, that non-disabled people are inherently superior.

Ableism is believing that people are automatically better, or have better lives, or have better brains or bodies because they aren’t disabled. (

Ableism is often so subtle that those of us without disabilities may completely miss it if we’re not looking for it.

Sadly, however, examples of the ableism exist all around us.

We see it in the belief that individuals with disabilities should learn to fit into our world, and when they cannot adapt, then they should be put in a more restrictive, isolated setting.

We see it when others make fun of those who act differently.

We hear it in jokes made at the expense of those with disabilities or when people say things like "He's acting so autistic". 

The mindset is reinforced in books, television, and movies.

Autism Awareness Month is coming to a close, but the question remains- 
Are we as a society truly more aware?
And, if so, what “awareness” messages have we received?
That it is okay for a mother to throw her autistic child off a bridge because he is just too much to handle?
That millions of children across the globe are in danger because of the “disease” known as autism?
That autism will steal our children away if we’re not watchful and vigilant?
That autistic individuals are lepers and “the least of us”?
When we listen to these messages, we must consider who is doing the talking.  In this case, powerful organizations such as Autism Speaks are sending certain messages loud and clear.  Meanwhile, the voices of autistic adults are often missing from the conversation.

Certainly challenges exist for autistic individuals and we need to work together to find solutions to face these challenges.

More job opportunities are needed for autistic adults.

Better housing options are needed for the growing numbers of adults aging out of the system.

We need more innovative communication tools to assist those who cannot speak through traditional methods.

Our society needs to get a lot better at finding ways to accommodate those with sensory differences.

There is so much work to do.

But our conversation cannot end there.

We must look beyond our definition of normal in order to recognize the true worth and potential in others.

We must recognize ableist thinking when we see it and call it for what it is.

It begins with eliminating certain words from our vocabulary, starting with the “r-” word.

It begins with changing our beliefs about the capabilities of others.

It begins with listening to the voices of those who we say we are supporting in the first place.

Awareness is not nearly enough.

It begins with acceptance.

It ends with respect.

Monday, April 27, 2015

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!