The Question I Kept Asking Myself After My Son’s Autism Diagnosis

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On August 2, 2012, my oldest son, Trenton, received the diagnosis of autism. I will never forget how I felt the moment I heard the words out of the doctor’s mouth. Dizziness and lightheadedness consumed my body seconds after hearing the words. At one point, I thought I was going to pass out.

I did a lot of thinking on our way home from the doctor that day. The majority of my thoughts were fear of the unknown. Nonetheless, one thing I kept saying to myself that day was, “How could we move past this life-changing diagnosis?”

Mother with children
Angela with her sons.

I spent a lot of time that day and the days to follow asking myself that. I began to ask myself those questions even more as time went on. Our lives were soon consumed with therapy five days a week. I was sleep-deprived and mentally exhausted, and our family faced new challenges in our lives daily.

The life we had before autism was gone.

However, what I did learn over time was that we could get past it, and we could have an amazing life. It’s just a different kind of amazing that we didn’t dream about until our son’s autism diagnosis.

It’s simply closing one chapter in our lives and starting another one. It’s closing the chapter of old dreams and old goals and making new ones.

Sure, it took awhile to get used to. There are days when I just wish we could do some of the things I dreamed about while I was pregnant with Trenton. However, as we all know, life doesn’t go the way we plan most of the time. It doesn’t mean you can’t get past your old dreams; you just have to start dreaming up new dreams that are suitable for your family.

If I could pass on any bit of advice to newly diagnosed families, it would be to stay positive. Focus on the positives that happen each day. As challenging as each day can be, there is something to focus on that is positive. Once you focus on the positives, you’ll be amazed at how you can look at your new life with an open eye and see the beauty that lies within it. You will soon realize your life isn’t over — it’s just the beginning.

Along with the positives, find other families who are similar to yours. I wouldn’t be where I am today without the support from my fellow moms and dads of children with autism. The comfort of knowing that others truly understand you and your life is a positive within itself. You won’t feel alone or isolated. You’ll can be part of a new community and have a new beginning in your life.

When I think back to August 2012 and the two years that followed that day, it was the most difficult time in my life. I was too focused on the thought of never being able to move past the diagnosis and the life I expected to happen. Nonetheless, when I accepted our life, it was just the beginning of an amazing new journey that I believe God gave me and my boys.

Follow this journey on Two Brothers, One Journey and on Facebook.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Dr. Seuss Quote My Teen With Autism Isn’t Ready to Get Behind Just Yet

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ryan smiling I love Dr. Seuss! I mean, who doesn’t? Who else but Dr. Seuss gets kids to Read Across America for a day in March or eat green eggs and ham? I can’t get my kids to eat food that is suppose to be green, let alone food dyed green that looks like something pulled from the dark recesses of the refrigerator.

This guy wasn’t a doctor; he was a wizard. Not only could Dr. Seuss rhyme better than Jay Z, he taught amazing life lessons to kids through funny, fabulous, memorable stories. No wonder he gets a National Read Across America Day for his birthday and Jay Z doesn’t. Sorry, Jay Z, I’m sure you can cuddle up with your millions to make you feel better.

One of my favorite quotes from Dr. Suess was prominently displayed on our pediatrician’s wall when the kids were little and I loved it. “Why fit in when you were born to stand out!” So true, right? Don’t we all want to stand out? Be someone unique, original, different? No. Not if you are a middle school teen. The last thing you want is to “stand out.” You want to blend in, be part of the crowd, look like all the other bewildered middle schoolers… until one day, you don’t.

My son Ryan just told me last week after a day of homework hell, that he doesn’t like to ask for help because he feels like “everyone is looking at me because I am different.” It broke my heart. We talked about how being different is cool. We talked about how everyone is different, autism or no autism, and how boring the world would be if everyone were the same, but, I knew it wasn’t resonating with him.

So, as amazing as Dr. Seuss was, as amazing as his rhyming still is, and as much as I still love this quote, it is not so true for the early teen years, especially if being “born to stand out” comes as a result of an autism diagnosis. So, if Dr. Seuss were still alive today, I would either text, tweet or IM him my rhyme for middle school-aged kids with autism, and maybe we could sit down and enjoy some green eggs and ham while we discussed it (yeah, not a chance, not even for a signed first edition of “The Cat in the Hat”).

My bust-a-rhyme rap would go something like this…

Sorry old doc, but this quote is a bust
when you are in middle school fitting in is a must.

With big body changes and feelings galore
it’s no fun to stand out when you feel so unsure.

One day being different will make him feel proud,
but, right now as a teen he wants in with the crowd.

He knows he is “different” that much is true,
but, some days being different makes him feel blue.

Being “same” may be boring and not how he was born
and being proud of his differences makes him feel torn.

The right pants, shirts and shoes are what makes these kids cool,
but, some days his body wants comfort in school.

When kids walk the halls laughing and fitting in
he can’t help but wonder, “How did they begin?”

He knows that his autism does not make him “less,”
but, sometimes feeling “more” would be sure fun to test.

In chorus when he sings notes from his heart
he knows that his differences stand him apart.

But in the halls and the lunch room where kids tend to gather
he feels like an outsider where his heart doesn’t matter.

When he comes home to a place where he knows that he fits
the big parts of the day slip away to just bits.

One day I know he will be proud to stand out
and I will be by his side when he stands up and shouts:

“I may not know what it is to be cool,
but, one day when I am long gone from this school
I will find a place where I belong
and prove to all others that labels are wrong.”

“Different, not less” is how the quote goes
and no one knows that better than those
who wear labels to school and beyond
but one day the labels for all will be gone.

The “cool,” the “hip,” the “out,” the “in”
the labels all change from where we begin.
Being different will no longer cause him to pout
one day I know he will proudly stand out.

The label “autism” is only part of who you see
the only label he wants is the word “me.”

“I am me, me I am
and for the times I don’t understand 
I look to those who only see me 
and not some label from a degree.”

“See me not the label!” 
he is trying to shout.
And when one day you do
he will proudly stand out.

I have no doubt that one day, when the doors of middle school close behind him, Ryan will fully appreciate his unique and fascinating mind, and understand that underneath the same cool clothes “everyone is wearing,” we are all different. Until then though, I believe he will continue to try and fit in, while embracing what makes him stand out.

I’m sure Dr. Seuss would suggest I stick to blogging not rhyming; we can’t all get a National Holiday to recognize our birth (sorry, Jay Z). Regardless of what Dr. Seuss would have thought of my mad rhyming skills, I still wouldn’t eat green eggs and ham with him. Nope. Not a chance. Not in a box. Not with a fox. Not on a boat. Not with a goat.

Follow this journey on The Awenesty of Autism.

The Mighty is asking the following: Describe a scene or line from a movie that’s stuck with you through your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Missed During My School Years as a Person on the Autism Spectrum

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I was diagnosed with Asperger’s in my early 30s. In my previous blog, I shared what it was like for me to be different in my earliest years. I would like to go further now and talk about how I felt during my school years.

Kindergarten through second grade were a blur. A fast-moving period of time when I went to school timidly, did well scholastically and arrived home breathlessly happy to be able to play with my close friends.

When I was in third grade, my family moved. I had trouble making new friends. The few sleepovers I attended were confusing and uncomfortable for me. A group of little girls I hardly knew, giggling and talking to each other about things only they seemed to understand. I felt so different from them, like an outsider looking in. I began to read a lot, mostly “Nancy Drew” books, and take long walks in the woods with my dog. My mother let me have my childhood friends over, and that made me so happy.

In fifth grade, I moved again. I didn’t even try to make friends. I was quiet in school, tried to blend into the classroom and be invisible. I sat alone in the cafeteria, played alone at home with my Barbies and read my beloved books.

And then my parents divorced, and another move came. Back to where I started.  In the same apartment complex I grew up. Where my good friends still lived. I was glad to be with them again, and we were wild kids in the evenings, played outside until dark each night.

But the days were hard. Because I was in middle school. And middle school was hell for me. I learned quickly that oral reports were near impossible for me, and I ended up refusing to do them by eighth grade. I flat out refused, red-faced in front of the whole class and the mystified, slightly miffed teachers. My grades were good, I was in all honors classes, but I willingly accepted a zero grade for each oral report I skipped. Gym class was a nightmare as well, a place where kids got picked for teams by their friends (I had none, as my dear friends were in different grades from me, so I got picked last, by kids who openly showed their displeasure at having to pick me). Gym class was also a place where I didn’t perform well, where I ducked at baseballs I was supposed to catch, dodged soccer balls, and basketballs passed my way. I was clumsy and afraid of climbing ropes, and I couldn’t hit a volleyball over the net. The other kids scolded me and scorned me for my efforts or lack of. I came up with every excuse in the book to not attend gym. When I had to, when the teachers made me, I hated every minute of it, and at the end of each class, I walked away full of self-loathing.

We moved again, and my first two years of high school were spent in another state, far from my childhood friends. High school was totally different for me. I found a group of kids I could fit into. They weren’t clicky or popular or athletic. They didn’t care that I was different. And they didn’t converse much about anything, which was great for me, as I generally sucked at following conversations.

They were potheads. And to hang out with them, I had to be one too. So I became one of them. My grades fell quickly. I started to smoke cigarettes. My mother didn’t know what to do about my new don’t-care attitude, but I ignored her. I finally found a place where I fit in. With the misfits. And I was in all my sensory glory, cozy in my new sedated world. As wrong as it all was, I was happy again.

I was later hospitalized for depression, although I certainly didn’t feel depressed. The hospital was depressing for sure. Strange foods I wouldn’t eat, strange people and kids who talked about feelings, and of course, strange medications, which made me feel numb and like a nobody.

I moved again, this time to live with my father. A new high school in my home state. I flat out ignored the other kids in school. I barely passed my classes. I read my books, did my homework and just lived. After some time it all became so unbearable, I dropped out. I was three months shy of graduation. I never went to a concert or a prom or a high school party. Never even wanted to. And I have no regrets about that.

My children sometimes ask me why I didn’t go to college. I always change the subject, redirect them to something easier to talk about. How could I possibly explain all of this to my sweet little ones? The dread I felt each morning before going to a school where I didn’t fit in, the ridicule I faced during my gym classes, the utter boredom of being forced to learn what I did not want to learn, the self-hate I felt as I walked eyes down through a sea of students in a hallway. Not to mention the noise of it all. Echoes of laughing and chatting and yelling in the cafeteria and hallways, slams of lockers and feet stomping by. All those strange faces and eyes that would surround me in school, looking at me, seeing me as different. Oh no, I cannot explain that to them. Not yet. But as my children grow older, wiser and more able to understand these things, I will tell them.

They are both on the spectrum, you see. I homeschool one so she won’t have to know the social difficulties I knew. She loves animals, horses particularly, and I plan to follow through with that interest in hopes of her following a different path than the one I took. A healthier, more self-loving path where she can bond with others her age who share her interests. And for my son, who attends a brick and mortar school, I hope to do the same. Find his interest and allow him to flourish with it.

Thinking back, that’s what I missed. The opportunity to be myself in a setting I flourished in. But I cannot fault my parents, as I still have not found that setting. Perhaps it is in parenting and advocating for my children that I find myself at home and at peace.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them?If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To the Angry Woman at the Park Who Scolded My Nonverbal Son

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Dear mother in the park,

Thank you.

I still think of you occasionally. Our interaction has become something of a turning point for me. I have no doubt you have long since forgotten about me. But I wish to thank you. In a time of uncertainty, you forced me to find a strength I wasn’t sure I had. It shaped me into a better parent and added “advocate” to my repertoire.

The day I met you may not have been your finest hour. I think you must have been having a bad day. Maybe you had never encountered a child with an invisible disability. And I know ignorance can breed discrimination.

There must have been a reason for your behavior. I refuse to be a person who just labels someone inherently “bad.” It is too simple. Human beings exist within the greys.

My eldest son had only recently turned 2. My second son, then a newborn, was sleeping in the stroller. I was juggling three hourly feeds (and all those snacks in between) with a 2-year-old who was self-harming, an extensive autism diagnosis process and a chronic illness of my own. No one was to know that. I was just another exhausted mother at the playground. I was trying to work off the famous 2-year-old energy before dinnertime, looking forward to a couple hours of precious sleep before the night feeds began. Our sons tussled on the slide, both vying for the first turn. We were both on hand. Neither was hurt or bothered. It could have ended there. To be honest, I think it should have. But I wouldn’t remember you if it had.

Your reaction surprised me.

You turned around, addressed my son directly and scolded him. Now, let’s ignore that this was a result of normal toddler behavior and no one was hurt. In fact, your son was already climbing up for the next turn on the slide. Nor am I against other parents telling my sons to knock off bad behavior if it is done right. It takes a village to raise a child, doesn’t it?

This was not done right.

You demanded my son apologize.

When I explained my son couldn’t say sorry because he was completely nonverbal, you responded with a look of disbelief. You attempted to get in his face, requesting he look at you when you were talking to him. It’s not just that I knew he couldn’t do what you asked, I also knew he didn’t have to. It bought out the tiger mother inside of me. You had crossed a line. I’m sure my face darkened.

I got between you and my anxious 2-year-old who was on the brink of a full meltdown, and told you to back the hell off. You were angry. I was angry. This had gotten out of hand very quickly. I picked up my gorgeous little boy and wrapped my arms around him. As he nuzzled into my shoulder, whimpering and overwhelmed, I took a cheap shot. I told you I hoped you never had a child with special needs — you weren’t cut out for it. It’s not something I’m proud of. It was said in the heat of the moment, in anger and protection. Who knows what sort of day you had? Who knows what stressors you were facing behind that face lacking compassion? But I wasn’t feeling particularly empathetic at the time.

mom and son in blue shirt smiling
Rachelle and her son.

It is the next moments that I am proud of. As I walked away, I made a decision. I was not going to give in to the impulse to slink away. My little boy was not going to get his playtime cut short. He had just as much right to be there as any other child. Tears were filling my eyes when another mom showed kindness by giving up the prized swing. As I pushed my son he calmed down, enjoying the movement. You left shortly after.

It wasn’t anyone’s best moment, but it had a lasting effect on me. Ever since, I have been determined that my son’s right to be present, to enjoy and to participate should be enacted. A medical diagnosis did not diminish him as human being. I decided then I would move heaven and Earth to protect those rights. His light would never be diminished by a label.

A year and a half later, I want to thank you. Your lack of compassion forced me to discover my inner advocate. My son is better off for it.

Follow this journey on Rachelle’s blog.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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University of Minnesota Students Design Backpack for Kids With Autism

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Six University of Minnesota students have developed a backpack for children with autism.

The “Nesel Pack” has pockets where weights can be added to function like a weighted vest, helping people with sensory challenges feel a calming pressure, like a bear hug. Military-grade fabric, seams and zippers make it more durable than the average backpack. A personalization window leaves room for an ID card, and clips for sensory tools or toys as well as multiple chest straps provide extra security and comfort. The pack can comfortably fit a 14-inch laptop and iPad.

“We wanted to make a backpack that would be like a security blanket,” Will Radke, Nesel’s chief relations officer, told the Star Tribune.

Liam Craig tried on a backpack designed for children on the autism spectrum by University of Minnesota students Will Radke left and Jake Portra March 3, 2016 in Woodbury, MN. ] Jerry Holt/Jerry.Holt@Startribune.com
Liam Craig tried on a backpack designed for children on the autism spectrum by University of Minnesota students Will Radke left and Jake Portra March 3, 2016 in Woodbury, MN. | Photo by Jerry Holt. Copyright 2016, Star Tribune

Radke, 21, grew up in Milwaukee where his parents hosted foster children for more than a decade. Some of those kids were on the spectrum, “so [Radke] saw firsthand the stress some children can feel in high-commotion situations,” Nesel team member Larry Lorbiecki told The Mighty in an email. When Martha Pietruszewski, the team’s CEO, brought the idea for a backpack for people on the spectrum, Radke immediately saw the value in it. The Carlson School of Management seniors took on the project for an Entrepreneurship in Action class.

The team — which also includes Jake Portra, 22, Cole McCloskey, 22, and Rosebert Altianas, 21 — partnered with Fraser, a company that provides services to children and adults with special needs, and within six months had the first-generation product. After four prototype iterations, they’re now close to a final product. They’ve combined research with feedback from students at Bailey Elementary School in Woodbury, Minnesota, to ensure the pack meets as many people’s needs as possible.

“It is the most heartwarming and rewarding experience to see how the backpack could change a child’s life,” Lorbiecki, 22, told The Mighty, after giving students a test run. “Seeing the smiles on their faces reassures all the hard work we’ve been doing over the past seven months.”

front view of backpack showing multiple straps

backview of backpack showing personalization window side view of backpack

While the Nesel Pack was designed with autism in mind, Lorbiecki says it could benefit any person with sensory perception needs. “Anyone can personalize their backpack to make it an extension of themselves,” he told The Mighty.

On Saturday, March 19, the team is launching its Kickstarter campaign so they can make the packs available to the public. The bag is available for preorder for $115 on the Nesel Pack website. Lorbiecki says the seemingly steep price is justified because the pack should last a solid three years (versus a $20-$30 pack that lasts about a year) and simulates a weighted vest, which can go for $30-$90. For more information, visit the Nesel Pack website.

nesel team standing in snow
The Nesel Pack team

h/t StarTribune

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Adult Shares ‘Deepest, Darkest Secret About Autism’ on Quora

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When a user on Quora.com, a question-and-answer website, asked “What’s the deepest, darkest secret about autism?” only a few responded. The top-voted answer came from an anonymous adult on the autism spectrum:

The full post reads: 

I applaud the parents and family members who have taken their kids to special classes, therapy, intervened at school, and were patient and loving with their autistic kids. As an autistic adult, I know we can be very challenging to deal with, and I think you parents are superheroes. Unfortunately, the darkest secret is that not all autistic kids were lucky enough to have such great parents.

Please note: if you are a parent who is  working to help your child do better in school, deal with their sensory issues, improve their social skills, and protect them from bullying, this post IS NOT about you. You are a hero.

The darkest secret is that not every autistic child is lucky enough to have a family that is patient, nurturing, and kind. Not every autistic child has parents willing to take the time to understand that their children need help understanding social rules, need patience when their children are overwhelmed by their environment, and understanding that their children are not trying to be brats when they have a meltdown. Some autistic kids had parents who never got their children tested because they didn’t want to believe that they had a child who was “different”, never took them to therapy or special classes, and rarely intervened when they were bullied. Some parents even blamed their children for their own bullying: “What did you say to make them want to hurt you?” Some autistic children are abused, neglected, molested, and even killed.

To be fair, not much was known about autism when I was a child, but it seemed like every time I did something wrong, my parents thought I was doing it on purpose, to be dramatic, to be a brat, that I wasn’t trying hard enough. Nothing could be further from the truth. I wanted to make them happy. I hope the increased awareness of autism has changed things for the better, but I suspect that there are still places where there are very few resources for early detection and treatment, or support services for overstressed families.

Another person on the spectrum responded that there is no “deep, dark” secret about autism. “I’m a little weirded out that people think there is,” the user wrote. “We’re not Magical People with a Deeper Understanding Of The Universe. We’re also note broken; there is no deep, dark secret that will cure us. We’re just people. Perhaps people who interact with the world differently than you do, but still just people.”

How would you have answered this question? Let us know in the comments below.
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