I Won't Apologize for My Son Having Autism

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Parenting a child with a disability can create a good deal of anxiety in even the most self-assured person. You’re constantly questioning, “Am I doing enough to help him develop? Am I going to be able to get him all the therapy and equipment he needs? If something happens to me, who’s going to be able to take care of him?”

One could feel completely overwhelmed on an almost daily basis.

That said, you do get to a point where you get into a certain rhythm, a point where you’re actually able to develop a routine that helps you and your child make it through the day without too much added stress. Unless, or course, you add in the one thing that adds more stress and anxiety than any other:

Other people.

You can’t keep your child locked away. It isn’t practical and it’s also not good for the child. I stress more about taking my son out into public than just about anything else. It’s got nothing to do with being ashamed or embarrassed of my son. It’s got to do with how people might react to him, and how he might react to them. I’m not someone who believes the world revolves around me or my boy, autism or not. You adapt to the world, not the other way around. I believe I have zero sense of entitlement. Patience from others is always appreciated, but never assumed. The world just doesn’t work like that, and it doesn’t do me or him any good to pretend otherwise.

While I do everything I can to try to keep him calm when we’re out, there are times when things are out of my hands. When those times hit, I will apologize for any disruption he may have caused for others who just happened to be in the wrong place at the wrong time. There are many things I will apologize for.

There’s also plenty for which I will not.

 

I will not apologize for taking him out to public places. He has just as much right as anyone else to experience everything the world has to offer. I won’t apologize for exposing him to new people and places in an effort to teach him how he is supposed to behave when he’s out. I won’t apologize for taking the chance to introduce him to other children his age, so that he might learn what it means to make friends. I won’t apologize for holding onto the hope that this trip to the mall might go better than the last. I won’t apologize for the mere sight of him stimming while keeping to himself making someone uncomfortable. I won’t apologize for him coming out of his shell and actually reaching out to someone. Anyone he does reach out to should consider themselves lucky. I won’t apologize for what I do if someone decides not to accept an apology when something goes wrong, pushing the issue by frightening or mocking my son.

To digress,  I will apologize to whomever is kind enough to post my bail afterwards.

Most of all, I won’t apologize for my son having autism. We all have challenges that we face. He and so many other children and adults like him face challenges far tougher than most can understand. So while I might apologize to the stranger who’s caught off-guard and doesn’t know his situation, I will never apologize for taking the opportunity to show the world how beautiful, loving, funny and wonderful my boy is.

That doesn’t call for an apology. That calls for thanks.

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This burrito looks very tasty with beef, peppers and melted cheese. And now people with screen readers, you can join in being hungry.

How My Life With Asperger's Is Like an Overstuffed Burrito

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I generally don’t get symbolism; I’m just wired that way. Tell me something and I’ll think you actually meant what you said. Art and literature usually don’t cause any emotional stirring within me, regardless of how much I want them to.

But music… music can move me. On rare occasions I’m even temporarily gifted the ability to see deeper than the words in a performance, and I feel touched and enlightened.

These words are the beginning of one of those experiences for me:

“I can’t fit my hand inside a Pringle can.”  —Bo Burnham

A lament for our time, found within the closing performance by Bo Burnham during his Netflix special “Make Happy.” As he asks “If you feel me put your hands up,” hundreds of hands are lifted to the sky and Bo proclaims: “Look at all these hands that are way too big to fit inside a Pringle can. Pringles listen to the people! Just make them wider!” Such wisdom from a young man of 25.

OK, maybe it’s not that profound. However, as often happens with people on the spectrum, Bo’s performance got stuck on a loop in my head, and I ended up watching it over and over. Fair warning, “Make Happy” isn’t for everyone. Bo’s sense of humor would offend the majority of my acquaintances, but for me, the loop I got stuck in helped me find meaning in his words.

My life with Asperger’s syndrome is a lot like trying to get Pringles out of a can that is too small for my hand.

In certain situations, no matter how hard I try to fold myself to conform to a standard determined by someone else, if I try to follow my own logic, what I want is just beyond my reach. Since “my way” of thinking can’t work, I get overwhelmed and just dump everything out and pick-up what I can, hoping I’ll be able to clean up the messy crumbs when it’s done. More often than not, I just leave a small disaster in my wake.

Sometimes I literally end up dumping things around me out to get to things I need because I end up overwhelmed by the process. More often it’s not something physical, it’s the frustration of trying to communicate in a way other people understand, which results in me spitting out a whole lot of words. Sometimes it hurts people around me… I get the feeling people don’t like Pringles crumbs spewed all over them. I often wonder how I get myself into these situations in the first place.

“I wouldn’t have got the lettuce if I knew it wouldn’t fit. Wouldn’t have got the cheese if I knew it wouldn’t fit. Wouldn’t have got the peppers if I knew they wouldn’t fit.” –Bo Burnham

Bo continues on to tell of a time he went to Chipotle and got a chicken burrito. Going down the line, he added ingredient after ingredient. When he got to the end, the guy tried wrapping it up but half the stuff spilled out, thus defeating the purpose of a burrito.

Why didn’t the expert warn him he was getting too much? Did the expert think it was obvious that you can’t put everything in a burrito? Did he think Bo was the one giving instructions, so he must know what he wants? Did it cross his mind that a little warning or advice could have made things better? Did he intentionally withhold the information because he gets a kick out of people’s burrito misery?

Regardless, the burrito expert stayed silent, and Bo was left with a mess. If only Bo had known, he wouldn’t have got half of what he did. The mantra cried over and over. “I wouldn’t have got the lettuce if I knew it wouldn’t fit.” And there is a huge part of my life with Asperger’s summed up in a silly song.

Life often feels like a series of mistakes made because no one told me what to them was obvious. And since no one explained to me how to behave, I’m stuck feeling foolish with a messy burrito spilling everywhere. I think many people can relate to that situation. But for me, and perhaps others on the spectrum, it goes beyond people not telling me how to behave. Often I’ve been told. I should know better, but I simply didn’t have the capacity at the time to link that information to the situation in which I found myself. I don’t always have the ability to know what is going to fit a given situation, and that can leave me stuck looping over where I went wrong after the fact.

I wouldn’t have talked so much about my interests if I knew how to read the “obvious” social cues that you want to end the conversation.

I wouldn’t have stayed silent to the point of it being awkward if I knew this was the part where I was supposed to participate, since you made a tiny pause indicating you were looking to me to speak now.

I wouldn’t have talked over you if I knew my pause for breath told you to begin speaking.

I wouldn’t have answered your question honestly if I knew the correct thing to do in this situation was to be polite and validate your point of view.

I wouldn’t have sat in a corner secretly plugging my ears because it’s too loud and too much is going on if I knew of a socially acceptable way to deal with being overwhelmed.

I wouldn’t have tried to fit my hand in the Pringle can.

I don’t think I can handle this right now.

I know everyone gets overwhelmed and plenty of “normal” people have problems trying to fit in. It’s not just an Asperger’s or autism thing, and I don’t want to diminish anyone’s experience. While Bo is relating his own struggle of trying to deal with life and fitting in, the song resonates with me. If you want to really “feel” the internal conflict I think many people on the spectrum deal with every day, take the last 60 seconds of the video or so and then loop it… for an hour or two.

Not the most uplifting post, I know. But that’s the thing — life isn’t always about happiness and being uplifted. We feel sad, angry, disgusted, or afraid sometimes, and often more than one of those at a time. “Can’t handle this” transitions from talking about our problems to those conflicting emotions we find while trying to “Make Happy.”

But is “making happy” really the point to all this?

I guess we’ll have to find out.

Follow Jeff’s writing on LinkedIn.

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Why I Won't Stop Advocating for My Child on the Autism Spectrum

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Yes, I am a constant advocate (nudge, champion, upholder, supporter, backer, promoter, proponent, exponent, spokeswoman, spokesperson, campaigner, fighter, crusader).

I won’t stop:

Until people grasp that everyone is “different.”

Until everyone includes him.

Until people see my son first — autism second.

Until everyone is kind to my son.

Until people realize the spoken word isn’t the only way to communicate.

Until everyone sees his abilities, not just his disability.

Until people do not flinch at his stims.

Until everyone knows that he won’t stop.

Until people acknowledge my son is a full part of society.

Until everyone knows he has dreams.

Until people recognize he has feelings.

Until everyone accepts my son has potential.

Until people realize that he is an equal.

Until everyone is human to my son.

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The Obstacles to Learning That Bullying Imposes On Children With Disabilities

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When I was growing up, every month was autism awareness month in my home, but definitely not in the general community.

My younger brother was diagnosed with autism when I was about 5 years old. I don’t remember a time when I wasn’t aware he had a disability and an ever present sense that my family was different. Even though my brother didn’t go to my school, word got around quickly; as a result, I was bullied fairly frequently, as was my youngest sibling. What we dealt with on occasion was nothing compared to what our brother endured on a daily basis. He was quickly identified as “different,” leading to isolation on the bus and at the lunch table, as well as overt acts of cruelty.

Bullying, and the consequences for victims and bullies alike, has been a timeless problem for many students, parents and schools. However, bullying for students with disabilities creates significant obstacles to learning and social development in a way that many students without a disability most likely won’t encounter. In some instances, those kids who have experienced bullying lash out at others who they sense are more vulnerable than they are, and become the bullies as they seek some control over their environment. Though bullying has obviously been an ongoing issue for many children, both with and without disabilities, there has not been a nationwide push to address it until the past several years.

Following the tragic deaths of several severely bullied students, many states’ legislators sought to create a legal recourse for victims.

However, the notion that an unending litany of harassment, as well as verbal, and at times physical abuse, could interfere with a student with a disability’s ability to receive the “free appropriate public education” (FAPE) required by the Individuals with Disabilities Education Act (IDEA) remains a point of controversy. In those courts that do find a denial of FAPE, the decisions indicate that in order to be successful, the individual facts must be able to clearly demonstrate that the student suffered clear and egregious bullying, which undeniably created an environment non-conducive to the receipt of a meaningful education. While it seems as though this would be a widely accepted and easily understood concept, it unfortunately remains an idea that disability advocates in some states continue to fight long and hard for.

Middle school and high school years are difficult for most. It’s a time of enormous growth and development, both internally and physically, which makes navigating a complex social scene tricky for many kids. But it can be virtually impossible for kids with disabilities, both physical and intellectual. We all want to fit in with some group, any group, that will accept us for who we are, differences and all.

My brother is one of the strongest, most resilient people I have the fortune to know and I am proud of the strong young man he has become. However, he should have been spared the bullying and instead been embraced for his many strengths and talents. I would be lying if I denied that my personal experience with this issue had a profound impact on my development and worldview. More importantly, it shaped how I perceive the most vulnerable in our society and instilled in me the importance of extending kindness to those around me. It is a lesson I seek to pass on to my daughter and hope that as she grows, the world will continue to evolve into a more accepting and compassionate place for all our kids, where their individuality can be celebrated, rather than targeted, all year round.

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When We Told Our Son He Is On the Autism Spectrum

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Our son was 7 years old when he got the autism spectrum diagnosis. He had already been scheduled to move from the special education class to the “Autistic Support” class because, thankfully, school districts don’t need a medical diagnosis to take action.

We had been through the ringer — no, Sean had been through the wringer three times in five years. Behavioral pediatricians, oral tests, physical tests, genetic tests, psychological tests, neurological tests and repeat the entire process again and again. All done at some of the best children’s hospitals on the east coast. But five years in, we finally had a diagnosis, Sean was on the spectrum. Now we just had to tell him.

Sean knew he was different. He knew he had meltdowns (we called them episodes). He knew he wasn’t the same as the rest of the kids at school. He just didn’t know why. This led to frustration on his part, which led to meltdowns and periods of melancholy.

To be honest, we knew. His Mom and I had our suspicions he was autistic based on what we had observed in other family members. I believe secretly we wanted another explanation.

But Sean was Sean, autism and all. The autism is what made him, him. The spinning beads or string around his finger, the meltdowns, the mood swings, thinking things were his fault, the sarcasm, the jokes, the belly laughs, the hugs, the insisting on cuddling with Mom — it was all part of who Sean is. Our boy, our perfect little boy.

So all that was left to do was to tell him, explain it to him. Just as much for us as for him. We sat him down, turned off the TV, asked him to stop spinning the beads that were in his hand, and we started the conversation.

“Hey buddy,” I said, “You know how you think you are different, and how Mommy and I tell you it’s OK to be different?”

“Yeah.”

“And you know when you have episodes and get upset because you don’t know why you have them?”

“Yeah.”

“Well, you remember going to all the doctors and doing all the tests and playing all the games with the doctors?”

“Yes Dad, I remember all of that. Can we turn the TV on?”

“No and can you stop spinning for another minute?”

“Ugh!”

“And look at me please.” He did. “Well, we got it all figured out.”

“We do!?”

“Yes, we do. Sean, buddy, you have autism.”

“What’s autism?”

“Autism is a different way of thinking, a different way learning things. Autism is the reason you need to spin your beads and the reason you have episodes. It’s because, sometimes, your head thinks of things differently than me or Mom.”

“You don’t think the wrong way, honey,” Mom said, “just differently. It’s not a bad thing, it just means you need to work a little harder at some things. But you are very smart, Sean, very, very smart and you are doing so well.”

“Like school?” He asked.

“Yes like school.” Mom said.

At this point he went from sitting on the coach to laying on it, he was quiet for about a minute. We both wanted to ask him if he understood, but knew it would take a few minutes for him to grasp what we were saying to him.

His eyes welled up, and he said “Can you take it out of me?” he asked me.

“What?” I was a bit dumbfound.

“Can you take it out of me, Dad? The autism, please take it out of me.”

That was a gut punch. I’m his father, he’s 7, and he wants me to perform something impossible. I took a deep, very deep breath. “No buddy, I can’t take it out of you, and even if I could, I wouldn’t.”

“It’s part of what makes you so special,” Mom interjected, “it’s part of what makes you, you, like your blue eyes or your smile. It’s part of who you are and we don’t want to change that — ever.”

The conversation went on from there. Assuring him he would be fine and now that he knows why he does the things he does, maybe it won’t be so frustrating or scary for him.

You know what? It’s not anymore.

Since then, Sean has come to own his autism. We have only had two meltdowns in that time and he has a much better grasp on his emotions and social skills. Part of getting him to this point was a book we found recommended on The Mighty, “The Survival Guide for Kids on the Autism Spectrum (and their parents)” by E. Reeve & E. Verdick. Sean calls it “My autism book.” But the biggest part is Sean, and his ability to understand what we talk to him about and what we read in his “autism book.” But mostly, it is his desire to “try my best.”

Like every other parent, we tell him we are proud of his accomplishments, we tell him we love him and we discipline him “autistically” when necessary. He is doing well in school and Cub Scouts — he’s our perfect little boy.

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I Am Thankful My Daughter With Autism Was Accepted by Her Classmates

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As my daughter’s first year of school comes to an end, I want to give a huge thank you to a group of people. This year was filled with anxiety, doubt and a lot of scary experiences. There were many times I cried for my daughter. I can’t even count how many sleepless nights I have had. There were many times she came home crying and anxious. For every good day she seemed to have two bad days. But there was a group of people who stood by her side through it all. That group of people was her classmates.

My daughter is only in school for 3 1/2 hours a day. A lot can happen in those hours and I thought about this many times during the school day. Being that she has been at home with me her whole life, I did not know how she would handle a group of 3 and 4-year-old kids running around.

You might think I’m being dramatic about my daughter’s first year of school — I mean, everybody does it at some point. Why should I be more anxious? Well, my daughter has nonverbal autism. Something that is still a little hard to say or write. Sending her to school caused me more panic attacks than I like to admit. With all the regular school woes, I felt I had them 10 times more. Would the kids accept her? What if someone hurts her and she can’t tell me? How will she adjust without me? Will she be able to learn new things? Will the school be calling me constantly to come pick her up early? That is just a handful of concerns I had.

Throughout this year, her classmates were consistent. I am not sure where to even start on how much I appreciate each and every one of them. They accepted her right from the start. They were her biggest cheerleaders and celebrated her every accomplishment. Somehow, they could pick up on her cues and body language faster than most adults. They knew when she was sad or needed a break. If she needed something they helped her. There was never a day when she wasn’t looked after by this fantastic group of kids.

Above everything else, they were her friends. I am sure it wasn’t easy to understand why she doesn’t talk or doesn’t always hug back. But they never stopped being kind to her. They didn’t judge, whisper or bully. I know they may think she doesn’t understand or feel the same way towards them — but I believe she does. They showed her what it is like to have friends and be included in a group. And for that I will be forever grateful for each of these children.

If every person could be like the kids in preschool this world would be a beautiful place. I am thankful they were something most adults cannot. I am thankful they were kind. Thankful they accepted her differences and treated her the same as they treated everyone else. I will never forget their kindness. I hope they never change.

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