Tag Archives: autism awareness

I cried on the way home

It happened last Friday after picking up my daughter from school.

Every day when I pick her up, I ask the open-ended “How was your day?” when she hops in the front seat. Unlike Jacob, who promptly gives me one word utterances when asked such preposterous questions, Emma knows what I want to know. Well, to be fair, Jacob also knows what I want to know, but chooses not to elaborate.

On Friday, when I picked Emma up, we exchanged the usual niceties. But when she got to sharing about her European History class (another post for another day), she told me there had been a substitute that day and they had been assigned an essay to complete during class time.

She said she was busily trying to complete the essay during the time allotted, but was finding herself distracted by a group of three boys in her class. I asked what they were doing that was so distracting.

“Well, Mom, there is this boy in my class who I know has some special needs. He reminds me a lot of Jacob actually. A lot. His name is Alex.” *

“In what way does he remind you of Jacob?”

“Well, he talks to himself a lot like Jacob does. And he gets really upset sometimes, like when he misses something on a quiz. He will bang on his desk or be flipping though the pages of his textbook saying, ‘That’s not fair! That wasn’t in the reading!!’ or something like that.”

“Yeah, that does sound a lot like Jacob back in the day.”

“Yeah, well, it wasn’t Alex who was so distracting. Today, these other boys in the class were being really loud talking to each other and one of them was all the way across the room. And, well, they were making fun of Alex, Mom.”

<Insert the sound of a record scratching and the world coming to a screeching halt HERE>

“They were what??”

“They were totally making fun of him. I guess I never noticed it before because Mr. L is always talking or we are having a class discussion.”

“What do you mean? What were they saying?”

“Stuff like, ‘Ooooh, watch out! I bet Alex is gonna get all rage-y today’ and then, Alex got up to sharpen his pencil and when he was walking by, they said, ‘Oooh, I hope sharpening his pencil doesn’t send him into one of his rages!’”

Here is where I started to lose it.

I was so upset at the thought of this happening. I know bullying goes on every day in every single school setting (and non-school setting) in this nation. Not only to kids with autism but also to scrawny, nerdy, overweight, effeminate, unpopular, shy, or <fill in your own adjective here> kids.

But, y’all, this hit me in such a tender spot.

That could have been Jacob.

It could have been your kid. Maybe it is your kid. Maybe it was you when you were a kid.

I could feel myself going off the deep end.

“That is just so wrong! Do you think Alex heard them? Do you think he realizes they are making fun of him?”

“Yeah. He was kinda glaring at them as he was at the pencil sharpener.”

I was totally weeping now and babbling incoherently about Emma needing to tell those guys that they were a bunch of ignorant jerks and needed to cut it out. And how if she didn’t feel comfortable doing that, that I would email Mr. L and tell him myself.

Emma was giving me the “uh-oh, Mom’s really lost it this time” look.

And I think I had lost it.

“This, THIS, is why I will never, ever regret not sending Jacob to that place!” I said through my tears.

My heart was breaking, knowing that, without the one-on-one assistant Jacob had in public school from third grade through eighth grade, it would have been him. He would have been relentlessly bullied. I know it. Regardless of my mama bear interference.

And my heart was breaking for Alex.

A boy who is obviously capable of doing AP European History level work. Who has as much right to be in that classroom as those other boys. Who doesn’t deserve the treatment he was receiving.

I wondered if Alex’s mom was aware that this is happening. I wondered if it had been Jacob, would someone have spoken up for him? I wanted to go punch those three jerk-y kids in the throat.

But then, I know that ignorance and insecurity drive kids to say and do such things. And my insane knee-jerk behavior would not be the right response.

And so, I haven’t taken any action—yet. But for six days I have not been able to get Alex out of my mind.

I just keep asking myself, who will speak for Alex? WHO?

This past Sunday morning as we were worshipping in a church we have visited a couple of times, I noticed a family walk in just a couple of minutes late and and get situated on the front row. Emma looked at me with wide eyes and said, “Mom, that’s Alex! That’s the kid in my history class!”

My eyes started welling up again. The hair stood up on the back of my neck and I fought to regain my composure as I watched Alex.

I do not believe in coincidence. Though I did not meet up with Alex and his family that day, I am thinking our paths will cross again.

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We—collectively—have a responsibility to these kids. Both the bullied and the bullies. The bullied need to be loved, protected, empowered and encouraged. The bullies need to be held accountable and taught how to love themselves and how to respect others who are not like them. We have a responsibility to love on them both and to teach them about what love is—about WHO love is.

Bullies definitely need to be held accountable for their actions. They also need to be shown that there is a different way. I ask you, who will love the bullies enough to hold them accountable? Who will love them enough to tell them they don’t have to be that way?

We have a responsibility to teach our kids to friend the friendless, to stand up for the ones who can not or will not stand up for themselves. We must teach our kids to speak truth, to stand up for truth and for what is right. If enough kids do that, then the voices of the bullies will be silenced and kids like Alex will be more free to be who God created them to be.

*name has been changed

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Many Faces

I realize that I am on a string of serious posts here.  Sorry if that is bumming anybody out, but it just seems like there have been some heavy things happening in my part of the world of late! Just in case you were wondering, my funny bone does, in fact, still exist.

Moving on.

I have already mentioned in an earlier post this month that it is Autism Awareness Month

Autism doesn’t just occupy one month of the year at our house.  It is 12 months, 365 days, 24/7. However, I am glad that there is a month that recognizes families who are dealing with autism and honors the need to spread knowledge so that people who are in the dark can get informed. I am also thrilled to see the exposure that people like current American Idol contestant, James Durbin, and Zev Glassenberg from Amazing Race: Unfinished Business are receiving and bringing to the world of autism, specifically Asperger’s Syndrome. It should be noted that James Durbin deals with Tourette’s, in addition to Asperger’s.  It seems like almost every day I am hearing of someone…in the public eye or not…who has been identified as somewhere on the autism spectrum.

Autism is everywhere.

Fortunately, due to the wider exposure that some of these folks are getting, the information is getting out there.  People are being informed about autism and its many faces.

Autism has many faces.  Next time you are out and about, look around…in Wal-Mart or the checkout at the grocery store, at the movie theater, in your neighborhood, at your kids’ schools, at church, the soccer field, the bank, the post office.  The face of autism is everywhere.  Considering that 1 in 110 children in the US have an autism spectrum disorder (ASD), everyone knows someone who is affected.  Everyone. 

Autism is no respecter of persons. ASDs cross all gender, racial and ethnic lines.  ASDs don’t care if you are a millionaire in Malibu or if you are homeless in the streets of New York.  People in all walks of life are affected.

People are affected in varying degrees, thus the term autism spectrum.  At one end, there are individuals who are very high functioning, who may seem “quirky”.  At the other end are individuals who have no speech and have difficulty with every day tasks.  And then there is everyone in between. No two individuals are exactly alike, though they may follow very similar patterns of behavior.

  • The child you encounter may talk to you like he has memorized the Encyclopedia of Train History or he may not speak at all. 
  • The child you see having a tantrum at the local Applebee’s might not need a spanking. She might be overstimulated by the onslaught of laughter that has just erupted at the table next to hers. 
  • The child you meet at church who doesn’t look at you or return your hello is not necessarily being rude.  He may not understand the social cues or conversational give and take that comes naturally to most people. It probably isn’t because he has no home training.
  • The child at school who keeps to herself and walks the edge of the playground at recess talking to herself and flapping her hands is not a weirdo or stupid. She is quite possibly autistic.

Take a moment before you pass judgment on that mom who isn’t “disciplining her child”. Ask your children to be kind to the kids at school who they know have special needs or to the ones who just seem a little different.  And never, never allow the word retard to be used. Ever.  It is a horrible word.

Children and adults on the autism spectrum all want and need the same things that every other person wants and needs: to feel loved, to have friends, to be respected and treated with compassion, to feel successful.

They are more like you than they are different.

I know a young man who is hilariously funny. He is so smart that it blows me away sometimes. He is awesome on the Ripstik and could do flips around you on the trampoline.  He loves science. He plays the French horn.  He holds a black belt in Tae Kwon Do and a driver’s permit.  He loves all kinds of birds, especially birds of prey. He is kind and polite and compassionate. He likes to play golf with his dad. He is sometimes mischievous and like most teenage boys, enjoys aggravating his sister and playing Wii. He also hates cleaning his room and getting up in the mornings.

He is one of the faces of autism. 

He is my son. 

And he is amazing.

 

"Recognizing and respecting differences in others, and treating everyone like you want them to treat you, will help make our world a better place for everyone. Care… be your best. You don’t have to be handicapped to be different. Everyone is different!" ~ Kim Peek, inspiration for Rain Main.

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Filed under Autism Days, Inspiration, Jacob

Autism Awareness Month–Repost

 

*This is a repost from April 28, 2009.  I have had intentions of writing something about Autism Awareness Month for the last, oh, 7 days, but haven’t gotten to it.  I will get around to writing something fresh for AAM, but I feel this post still works. 

Please note that our son is now 16, and doing AWESOME!  Also, the current rates of autism in the US have been updated.  According to the CDC, now 1 in 110 are on the autism spectrum.  1 in 70 boys.  1 in 315 girls.

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This is late in coming, but I’ve had some trouble finding my inner-blog for a while and I still wanted to get the word out there…even though it is the end of April!  But I hope y’all will appreciate my feeble attempt to share what is a big part of our lives with you!

Fourteen years ago, our lives changed forever…we became parents to the most beautiful baby boy ever born.  Five years after that, our world was rocked in a way I will never be able to adequately describe here.  We have been blessed beyond measure and experienced the depths of sorrow.  We have celebrated victories and walked through challenges.  We have cried, but more often we have laughed.

In April of 2000, our son was diagnosed with Asperger’s Syndrome, a high functioning form of autism.

April is Autism Awareness Month

So, what, exactly, do I want you to be aware of?  What do I want you to know about my son and others like him?

  • 1 in 150 births are affected—this makes autism more common than pediatric cancer, juvenile diabetes and AIDS combined.
  • 1 – 1.5 million Americans are living with autism
  • autism is the fastest growing developmental disability
  • every 20 minutes, a child is diagnosed with an autism spectrum disorder
  • autism is disproportionately more common in boys than in girls
  • the cause, though often speculated about, is unknown and there is no cure

People with autism experience challenges in three primary areas—social interaction, communication and repetitive behaviors.  These challenges vary in severity from mild to debilitating.  There is a huge amount of information on the web now about Autism, PDD, and Asperger’s Syndrome.

What I want people to remember most of all is that people with autism are people.  People who want to be loved, understood and accepted.  People who have gifts and talents to offer the world.

This is a video I made last year for Autism Awareness Month…thought I’d share it here again.

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Filed under Autism Days