What a New School Year Felt Like as a Person on the Spectrum

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Growing up, I always found the last week of summer to be a bittersweet experience. I relished the freedom, yet I felt terrified about the new school year ahead. I’d start to build up an overwhelming amount of anxiety that would travel with me into the classroom.

If you had asked me what I feared the most, I probably would have said the social challenges that I always struggled with. But there was another difficulty involved, one that I didn’t understand until many years later: the sensory onslaught that a new school year represents.

Back then, I didn’t understand that I was on the autism spectrum and had sensory sensitivities. The world just felt like… well, the world. I didn’t know how to disentangle the reality I was perceiving from the individual senses that were piecing that reality together. It took a long time to figure out how it all worked — not just my senses, but their patterns and the different ways habit and change can impact them.

Today, I can look back and understand why going back to school was stressful: being at home during the summer meant being somewhere so familiar that I had long since acclimated to the sensory data of the surroundings. The lighting, sounds, tactile variations… my mind was used to it all and did not have to work as hard to process the never ending stream of incoming data.

The familiar is peaceful.

Change is the opposite. Change means the senses are raw and exposed and under attack.

And school was always that opposite after a summer immersed in the sensory familiarity of home.

A new school year would mean not just a different setting, but one that included a huge number of different rooms and activities. The classroom had one set of sensory experiences (the sound of pencils being sharpened, the peppery scents they caused, chair legs scraping floors, etc.). The hallway had another set (rowdy kids, their echoing voices). The playground had its own range of sensory experiences, as did the lunchroom, the bathrooms and so on.

It takes my mind quite awhile to acclimate to any new environment. And school was a dozen new environments all rolled into one.

At the time, I didn’t understand why I found simply being at school to be so overwhelming. Today when I go places, I immediately feel run down and I understand: my mind is just having to sort through a huge number of unfamiliar data points. The lights are different, and this can be painful until I acclimate (which can take many months). The sounds are different, which can feel strange and disorienting… again, I need time to get used to that.

If it is unfamiliar and it filters through one of the five senses, it can take quite a bit of time to acclimate to that newness.

For me, school was just layers and layers of confusing input that shifted throughout the day and intensified as we were shuttled from one activity or room to another. It felt like being inside of a giant sensory kaleidoscope that spun too fast — that I had no control over, that never stopped turning.

I mention it now because at the time, I never had words for any of this. I just stressed and felt overloaded and I couldn’t understand why.

I don’t know what could have made a difference, what sort of interventions might have been helpful. I just think understanding it would have been nice. Understanding it would have removed a lot of that confusion. And these being sensory issues, they were invisible to others. I wish the impact of school had been better understood by teachers and other students.

I think with kids on the spectrum, people see the discomfort and sometimes the outbursts. They can see the results. What they don’t see is the internal chaos that is being caused by factors most people aren’t even aware of.

Pencil being sharpened. Echoing voice. Chair scraping floor.

Simple things for some. Chaos for others.

Your reality can get thrown into that kaleidoscope and start turning and turning.

Follow this journey on Invisible Strings.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, 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.

Lead photo source: Thinkstock Images

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Disney Addresses Autism on This Week’s Episode of ‘Girl Meets World’

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The Disney Channel will air a special episode of “Girl Meets World” this week that the company hopes will start a discussion with kids about autism.

According to a press release, the storyline is aimed at delivering “both entertainment and information for kids and parents about Asperger’s syndrome, an autism spectrum disorder.”

The show’s main characters, Riley and Maya, show “empathy and acceptance as they support their friend [Farkle],” who wonders whether he may be on the autism spectrum. In the episode, “Girl Meets Farkle,” we’ll also see Mr. Matthews (played by “Boy Meets World” alum Ben Savage) address his students about “the importance of uniqueness and compassion.”

four members of the cast of Disney's Girl Meets World
Disney Channel/Ron Tom

The network hopes the story will “spark conversation among kids and their families,” and producers consulted with three experts: Elizabeth Laugeson, Psy.D, The Help Group; child development consultant Arthur Pober, Ed.D.; and Shiela Wagner, M.Ed., retired, Emory Autism Center.

While a number of hit shows have briefly touched on the subject, Bustle pointed out that the last time a notable TV character was diagnosed with the disorder was on NBC’s “Parenthood,” which wrapped up in spring 2015. Max Braverman, who was on the spectrum, dealt with bullying, and the series chronicled the struggles and triumphs of his daily life.

The “Girl Meets World” episode will air on Friday, September 11 at 8:30-9:00 p.m., ET/PT on the Disney Channel.

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Why It’s OK My Son With Autism Is Obsessed With Microwaves

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So let’s take a minute to talk about autism and obsessions. Now, when I say “obsession,” I really mean obsession. This is much different than just having an interest in a person, place or thing. Your child might really, really like SpongeBob, but a child with an obsession won’t see, hear, think or talk about anything else no matter how hard you try to distract them. I’ve found that when an obsession takes over a child with autism, it can consume them. Also, more often than not, I’ve seen a child with autism develop an obsession with an odd object, not just a toy or make-believe character. With that being said, I want to share with you a story about my son, Granderson, and how his obsession with an odd object completely transformed my way of thinking about autism obsession. Yes, my 4-year-old (at the time) taught me, his mother, that when it comes to autism obsessions…just let them be.

At about age 3, my son became obsessed with microwaves. Yes, microwaves!  I have no idea what his fascination with microwaves was because he couldn’t verbalize that to me. All I know is that his life, and in turn my own, became 100 percent consumed by microwaves. He would draw them constantly — amazingly detailed drawings — he would talk about them constantly. He would pretend everything in the house was a microwave. And he would find them everywhere. I had no idea so many gas stations had microwaves! Probably the hardest part of this obsession to swallow was that he beeped like a microwave — constantly! We bought every pretend microwave we could find, and then I resorted to making them for him out of cardboard boxes because it was the only thing that peaked his interest even a little bit. My entire house was filled with microwaves! This was by far the longest obsession he has had thus far. It lasted well over a year.

So when Halloween rolled around, I bet you can guess what my son wanted to be? Yep, a microwave. By now, I had mastered the art of cardboard microwave origami, so it wasn’t the effort of making the costume I dreaded. It was my fear of what other people would think of him wearing it. I tried to get him to change his mind. I’m sad to say I practically begged, but when an autism obsession is in full force, it’s like a Category 5 hurricane, knocking down any new idea in its path.

What would people say when they saw my 4-year-old dressed up as a microwave? What would other kids say? Would they make fun of him? I dreaded thinking about the comments about how he was “weird” or “strange” and immediately hit the fast-forward button in my brain to see him growing up and hearing comments like that. He already has extra challenges because of autism. Why couldn’t he be obsessed with something more normal and that wouldn’t draw attention to him in a negative way?

The silver lining was that a part of me was happy that he actually verbalized to me his own thought. It was his own idea, and he was able to tell me about it, which is a huge accomplishment for a child with speech delay and echolalia. And that is why, much to my own dismay, I gathered my supplies.

One cardboard box, one can of silver spray paint, one gray sweat suit, one piece of cellophane, one black sharpie and one battery-powered push button light and we had our microwave costume!

My son was thrilled!

The night came that I was going to take Grandy trick-or-treating in the church parking lot. I dreaded thinking about the large number of people all gathered into one parking lot. I dreaded the anticipated comments and stares he would receive. I dreaded the fact that it wasn’t very dark outside so he would be easily seen by everybody.  I was dreading the whole experience. But what I didn’t know was that my entire outlook on autism obsessions was about to do a complete 180!

We got out of the car at the church parking lot with my son holding my hand and proudly displaying his love for microwaves. Before we could even walk five feet the first comment was made…

Brittany Miller the mighty.3-001

“Oh my gosh, look at that little boy! He’s a microwave!” a lady said, pointing at Grandy and nudging the group of people she was with. “That is the most creative costume I have ever seen!” I watched the entire group turn their attention to Grandy. They were laughing at my son, but it wasn’t the kind of laughter I was dreading at all. It was the innocent giggles and smiles of other children and adults oohing and ahhing over how cute my son looked dressed up as a microwave.

All evening long the comments kept rolling in. Everywhere we walked, someone was complimenting my son about how awesome, cute and creative his costume was. I could only take credit for making the costume, but I made sure to mention that it was all his idea. My son reveled in all the extra attention and all the extra candy he received because of his creative costume idea. He was the star of the show. All eyes were on him, all comments were about him and all reactions were 100 percent positive!

That was the single moment that changed my outlook on autism obsessions. You see, it’s not about what the autism obsession is or how other people view it, it’s about the happiness and creativity it brings to your child. It’s about taking their obsession and letting them use it to be their own person. It’s about letting your child stand out in a crowd. Looking back, my child wasn’t afraid of what other people would think of him dressed up as a microwave, he was just happy to be a microwave. That fear lied solely within me.

So my here’s my advice on autism obsessions: No matter how strange they may seem, just let them be. Let your child grow with the obsession, learn with the obsession, be creative with the obsession and, most of all, accept the obsession. Don’t force your child to change their interests because you’re afraid of what other people may say or think. Let your child march to the beat of their own drum, and maybe you’ll find that marching along with them isn’t as hard as you thought it would be.

On that day, in just a single moment, my 4-year-old taught me the true value of acceptance, love, compassion, creativity and individuality. My 4-year-old taught me how to march along beside him, and for a single moment, he let me inside of his world. And it was beautiful.

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When I Knew in My Gut My Son Was Sick, but He Couldn’t Tell Me

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Six weeks ago we thought our son was gone. He was here but not “here.” He didn’t smile. He needed oxygen 24/7. He could barely move his body. He rarely made a sound and didn’t want to communicate. He looked at us as if he didn’t recognize us.

Today, he smiles with his beautiful dimples, he is without oxygen during the day, he can walk again, communicate again and, most of all, he finds joy daily. Now he’s riding a horse, playing sports and enjoying his life again. This is miraculous to us for so many reasons.

We had 6 to 8 months of rages. We thought it was low blood sugar, but in reality, his gall bladder was slowly failing him. The rages somehow began to be a daily occurrence, and his intensity ramped up. His previous doctors wrote it off as hormones and autism. We knew it was more but didn’t know what to do, so we moved to a new state. The drive was hard enough with multiple rages.

In our new state with a new house, new job and new everything, the rages became something we had never experienced before. The sheer violence we experienced daily could never ever be conveyed in words. For the first time in our lives with Kreed, we were afraid. Feeling that fear was one of the worst experiences of our life.

But it also pushed me to fight harder and look harder.

We knew our boy was an amazing kid and so loving and generous and joyful. He loved hugs and snuggles and loved to talk every day on his device about food and showers. Yet here he was beating himself, the house and us daily. Something was wrong, and we weren’t going to stop until we found it.

We finally got a break when the rages stopped suddenly, and he wouldn’t get out of bed, eat or engage with us at all. It was a break because we finally felt like the doctors wouldn’t see a kid with autism raging, but a kid who was in a health crisis. After four days of no eating and throwing up anything he ate, we sped off to the ER. The rest of our journey is chronicled in both “Out of the Darkness” and “Here but Not Here.”

boy smiling

The rest of this story is about his awakening. Our boy finally woke up from the pain, the medications and the fog that took him away from us. It feels incredibly miraculous that he has come back to us, and it’s a testament to his strength and our strength as a family. We have documented our entire experience from beginning to end with no filter. Our pain, our loss, our love, our return, our joy. We documented this journey to show others to never give up. If you know in your gut something is wrong, if you know it’s more than “behavior” and you know your child, keep fighting. If we hadn’t, Kreed may not be here today. If we hadn’t moved and met the incredible doctors at Memorial Hospital in Colorado Springs, Colorado, he may not be with us today.

This is also a testament to Kreed’s strength. Our son was in incredible pain, which we may never know or understand the depth of. He tried to tell us and kept asking for the hospital and doctors. We continued to listen and we took him to some doctors and were continually turned away and told that it was nothing. Listen to your kids even when they don’t say much. I am so thankful we continued to take him to the doctor and continued to question him. Never again will I doubt his communication attempts. He knows when something is wrong, and I can’t imagine how frustrating it must have been when he knew no one was listening and he was suffering in so much pain. I can’t imagine how this must have felt for him. No wonder he lashed out so severely until his body finally gave up.

I’ll never forget the day our son came back to us. When he smiled again. Laughed again. Hugged again. Kissed again. Communicated again. Those memories have slowly replaced the memories of him lying in that hospital bed and needing a machine to breathe for him. And we know for the rest of our life to fight, fight, fight for Kreed.

Fight for communication, fight for health, fight to be listened to, fight for life. I can’t imagine being Kreed, locked inside his mind, unable to fully communicate his thoughts and knowing he’s not always being listened to correctly. Knowing that his body doesn’t always work and causes him pain. I can’t imagine that.

And for that reason, I’m more than happy to spend the hours and hours it takes to get him to communicate on his device, teaching him how to do things himself, listen to him, fight for him and try to find new ways to experience joy. We are exhausted more days than not, but I barely feel it because I always keep in mind that I can talk, I can be listened to easily, I can make my own food and I can live a life without relying on other people to do everything for me. He can’t do any of those things and needs 24-hour supervision and someone to help him every step of the way. So no, I don’t feel like my life is over because we have to spend so much time helping him, and no, my exhaustion doesn’t compare to what he goes through every day.

And to my dear sweet boy Kreed, I am so sorry. I’m so sorry for not figuring it out fast enough. I promise to fight even harder next time and listen to your words. I will keep teaching you and helping you and most of all, finding even more joy for you to experience. We love you with everything we have and more.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

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When My Son's Invisible Disability Became Visible

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Something has changed quite recently. Something simple, yet from society’s point of view, something quite life-changing.

It isn’t my son. His needs and difficulties are exactly the same as what they were yesterday. He still can’t speak and has limited communication. He still has global developmental delay and learning difficulties. He is still doubly incontinent and vision-impaired. He very much still has autism. His genetic condition (neurofibromatosis type 1) hasn’t miraculously disappeared. He requires full support to meet his every need. But something quite fundamental has changed for him.

For the first time, his invisible disabilities have become visible.

He has always flapped in public. And screamed. Those just generated stares and cheeky remarks.

He has always made strange noises and avoided eye contact. That just made people look the other way, pretending they don’t notice him.

We have used handicapped stalls for some time now. I think some people think I’m someone very special because I pull a key out my pocket to open the locked doors.

We park in handicapped parking spaces and display a “blue badge.” But we were questioned and accused because we lifted a child out the car who then proceeded to walk to where we were going. Why does society only think you are disabled if you physically can’t walk?

We have endured awful comments, hurtful stares and had many people avoid us when our son has been in obvious distress over sensory overload or frustration due to communication difficulties.

We have had to live with the fact our son didn’t “look” disabled, so to most people, that meant he couldn’t be disabled. It was frustrating, distressing and hurtful.

But now that has all changed. His invisible disability is now blatantly obvious. And the difference in the public’s attitude has been incredible.

Miriam Gwynne the mighty.2-001

We have just been given a wheelchair for Isaac.

Suddenly, people are smiling at his flapping, they find his noises endearing and cute and they even open the door to the disabled toilets to help me in. They no longer have an issue with me parking in a handicapped space because they see a wheelchair coming out of the back of the car and a child being lifted into it. Strangers are coming up and talking to us like we are no longer contagious. When my son screams, rocks and bites himself, people want to help and ask what they can do to assist us, instead of talking about us behind our backs or staring at us in disgust.

When we take him to appointments, people now go out of their way to help and support us. Even medical professionals seem to take things a little more seriously. People are listening, respecting and supporting us, whereas before these were all major challenges.

All we did was sit him in a chair with wheels. But it changed things.

They told me having a wheelchair would be life-changing. I certainly would agree with that. A simple chair with wheels and handles has made life more pleasant, more manageable and much safer. I was expecting it would be major change for us. I just never realized it would be a major change for everyone else.

When our son’s invisible disability suddenly became visible, we changed how we behaved. I viewed my son as disabled, but now because of a simple wheelchair, others see him as disabled, too. The thing is he is just the same Isaac he was before. The only thing that changed was a set of wheels.

Follow this journey on Faithmummy.

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How We Guide Our Son With Autism Through His Teenage Years

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“I don’t know how you do it!” As a parent raising a teenager with autism, I’ve heard this a lot.

Well, here’s how we do it.

It’s just like being parents of typical kids but with more “oomph.”

We work harder for those “normal moments.” The times he wants to take a walk by himself. Or gets his own lunch. Or works out a problem with his brother. Or remembers to feed his fish without me reminding him. Or washes his face all by himself, twice a day, despite the fact that he hates light amounts of water on his face.

These moments are the result of a lot of practice with me. Practice without me. Practice again with me. Practice next to me, as he walks new routes by himself and I ask myself, “What was he wearing just in case he wanders off course and I need to call the police?”

Or as I feel impatient doing the same thing hundreds of times and have to breathe the patience back into myself.

Reminders. Stopping the reminders then quickly starting them again because he isn’t ready for no reminders yet. Complaints. Struggle. Then less struggle. Then no struggle.

Then pride.

And then celebrating how proud he is of himself and his accomplishments! Celebrating with him and his brother, who is just as proud of him as we are. Treasuring those smiles from all of us. Trying not to cry as we see his huge smile and not wanting to embarrass him. Usually crying anyway but just a teeny bit.

Oh, and those hormone fluctuations? Yes, they’re just like your kids, except the highs are higher and the lows are lower. And louder.

TJ suddenly crying — loudly. Like a little kid. And he doesn’t know why. And if he does know why, he is crying too hard to tell us. Deep squeezes as he cries because the pressure helps to calm him down. Deep breathing that we have practiced a thousand times. If we’re home, snuggling the dog because, “Pup always makes me feel better, Mom.” If we aren’t at home, I’ll smile politely as you stare, but not for too long as I squeeze this 6-foot-tall lanky boy with a mustache.

Those social struggles? Not an issue for us. He doesn’t hang out with friends. He doesn’t ask girls out (he did write a letter to a girl once but never mailed it). He is a rule follower. “I’ll never take drugs and alcohol, Mom, they are bad for you! I’m a non-caholic!”

He doesn’t get phone calls, which is OK since the sound from the phone going straight into his ear has always bothered him sensory-wise. There’s no social drama at school because he puts 100 percent of his energy into getting through his day and doing his work, because to him, that’s what he’s there for. He can relax when he gets home. Sometimes he will have a “lunch bunch” with some friends (the guys love him, thank goodness) but someone has to remind him to ask them about their interests, too, or he will talk about animals or “Family Guy” the entire time. (By the way, we never let him watch “inappropriate” shows, but somehow he watches them anyway! But these things are good for his social life, since all of the kids his age watch them and they talk about it together with lots of laughs.)

When I ask TJ if he wants to hang out with a friend or go to a dance, he always says, “No thanks, Mom. I’m not a hang out kind of guy.”

When he sees a friend driving by with a white-knuckled parent in the passenger seat, he is so happy for that friend. When I ask if he is ready to learn how to drive, he says, “Not yet, Mom. I’m afraid I’ll fall asleep or get distracted. I’m not ready.”

And when he has a question about anything, even something embarrassing, he always asks. He is not embarrassed. He will grin a bit, but he’s not embarrassed. He doesn’t ask his friends for information on dating, or sex or the changes his body is going through. He asks us. And we always answer honestly and openly and follow up a couple of days later after he’s had time to think about it.

So getting through this teenage thing is basically the same thing that parents of neurologically typical kids experience, right?

Just with a little more “oomph.”

Lauren Jordan the mighty.1-001

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