What the Adults in My Autistic Child’s Life Don’t Realize About Me

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We’re getting over the stigma about my son’s autism. I’m advocating — firmly and loudly — and I’m not afraid to look a little “weird” with him. If we have to bring a cardboard box to the grocery store so he can pretend to be a robot instead of rearranging the canned goods in alphabetical order, then we’ll bring a cardboard box so he can be a robot, and I’ll get a second to actually read the prices on the shelves.

I’ve learned the phrase to repeat to the school when they call and tell me he’s wandered out of the classroom or poked another child with a crayon or defaced the gymnasium floor with a rock he snuck in his pocket.

I say, “My son’s disability manifests as behavior. What are you going to do to accommodate his disability so he can participate in the classroom?”

I’m working hard to reframe my own understanding of his behavior at home, too, and to understand his disability manifests as behavior when he refuses to get dressed in the morning. He’ll sit on the floor beside the clothes I just gave him, but he’s so busy yelling about being cold that he can’t put his clothes on.

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As my son’s diagnosis has come to light, I’ve learned I’m on the autism spectrum, too. During a year of intensive appointments and evaluations with a medical center specializing in kids like him, I was frequently caught up in a moment of “Holy sh*t, I was like that, too” and often “I am still like that, too.”

It’s beneficial because I understand the coping skills I’ve developed as an adult — I wear heavy bracelets on my right arm as surreptitious fidgets, I keep a notebook for writing lists, I listen to instrumental music while I work and podcasts while I drive, I know my personal rules for the clothing I wear and I don’t even bother trying to sit normally in chairs anymore.

But I wish the other people in my life understood this…about me.

It’s taken a lot of work for me to get people to see my son as someone with charming “quirks.” It takes a lot of support from me. I advocate. Social assumptions about gender make it easier: He’s a “weird” little boy, and he’s seen as “just a weird little boy.” Of course he’s obsessing over rocks and dinosaurs and bugs — “He’s a boy.” He’s forgiven for his behavior.

But in IEP meetings, I wish they’d understand that sometimes the parent of an autistic child might be autistic, too. When I need to write down everything that is said, when I don’t make eye contact, when I miss the signal to shake a hand, when I launch into the meeting agenda with no small talk, when I am not sitting “normally” in the chair and when I start doing the “weird” things I do with my body language.

Social assumptions about gender require girls and women to display a social awareness that is often lacking in people with autism. I wish the other adults who are involved in my son’s life worked hard to accept me as much as they work hard to accept him. I wish they recognized he and I share many traits, instead of seeing him as a problem to solve and seeing me as a resistant obstacle. I wish I’d get the same permission to be “weird.”

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.

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I Remind Myself of This When Parenting a Teen With Autism Seems Daunting

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As a parent of a child with special needs, IEP meetings have become somewhat routine. Everyone shows up, discusses what Hunter (my son) needs and figures out how to accommodate him to make the most of his educational experience. The meetings are always emotionally difficult because they are a harsh reminder of the difficulties he faces every day. Most of the IEP meeting seem to blur together, but there’s one I will never forget.

At the beginning of his 5th grade year, we attended his annual meeting. We had our normal discussions about his lying to the teacher and how to help him deal with his struggles with fine motor skills, organization and his focus. Then, the talk shifted to Hunter’s educational future. 

An autism specialist was in attendance at this meeting to help us understand what to expect from this point. He began discussing what Hunter’s teenage years would look like because of his Asperger’s. He explained that raising a child on the spectrum during this tumultuous stage can be 10 times harder than raising the average teen. As I normally do, I went into fixit mode, so my first question was, “How do we make the situation better?” He chuckled and jokingly said, “Drink a lot of wine.”

He continued to explain that the teenage years are tough for kiddos on the spectrum. The hormones, peer pressure, harder school workload, all of it mixes to become a stress and sensory overload. He told me that things often get better, but there are normally a few years in the middle that are pretty tough.  I was scared to death of what that meant. I was already in the middle of a really tough stage with him. I felt defeated and tired. Now, I was being told by an expert that things were going to get tougher in a few years. I can still remember going home and walking around in a daze the rest of the day.

I was reading my journal the other day and came upon this entry I wrote just a few weeks ago. It suddenly brought me right back to that 5th grade IEP:

“As he enters this new stage, I just hope I am able to give him what he needs. Sometimes that seems like an impossible task. I find myself wanting to pull back and allow him to become his own man. I struggle with allowing him to fail. I struggle with knowing what my role actually is at this time of his life. Some days he still needs me a lot. Other days, he doesn’t want me around at all. He is struggling to find his way. I am struggling to find my new role in his life. His new responsibilities on his path to become an adult are starting to overwhelm him, and I am struggling to help him navigate it all.”

Well, here we are. We’ve reached the stage. This is hard! Hunter is confused. I’m confused. I’m not sure how to do this. There is no manual. His hormones are raging. He is angry with all of us most of the time and even calls us names under his breath. He is trying to fit in with his peers, but it’s a struggle. I want to try to prepare him for his future, but he is having no part of it. He fights doing homework, chores or anything considered in the category of work.

The autism expert from that IEP meeting was right! These years are tough. Tougher than I could have ever imagined. I don’t have all the answers. It is impossible to anticipate what is around the corner or how thing will end up. However, as I look back at how far we have come and look forward to the unknown, I hold onto this for comfort…

When Hunter was first put into my arms, I knew that being his mom would be the most important thing I would every do. On the day we were told Hunter has Asperger’s, I felt those feelings even stronger. Suddenly, I was more than just his mom. I was here to be his advocate. I was here to be his protector.  I felt relieved to finally have answers to some questions, but I also had fear and worry. How could I help him maneuver through the difficulties of life? I hoped I was up for the challenge.

Now here I am years later still with so many unanswered questions, but this time, I enter this new phase with a little extra knowledge. Honestly, I’ve entered every phase of Hunter’s life scared and unsure of the next step, and each time we have come out on the other side stronger than we were before. This time will be no exception.

Follow this journey on Sassy Aspie Mom.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or 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 Share Your Story page for more about our submission guidelines.

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Man With Down Syndrome Wins Fight Against Bullies Who Made Hateful Meme

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One man with Down syndrome took a stand against online bullying. And won.

Adam Holland, from Nashville, Tennessee, had a photo taken of him in an art class in 2004, when he was 17. About eight years later, the photo surfaced online, only people had altered it and turned it into an offensive meme, the Tennessean reported.

Internet bullies edited the paper Holland is holding in the photo to read inappropriate messages.

The Holland family filed a lawsuit in 2013 alleging that a man from Minnesota posted the image on photo-sharing site Flickr with the words “I got a boner” in place of their son’s drawing. The suit also claims that a Florida radio station owned by Cox Media Group posted the photo with the words “Retarded News” inserted on the paper and that a website called Sign Generator sold a downloadable version of the image online under the heading “Retarded Handicap Generator,” Disability Scoop reported.

Cox Media Group settled with the Hollands before the case went to trial, but on Wednesday, a federal jury ruled in favor of the Holland family, ordering Gigahertz Inc., the owners of the Sign Generator website, and Russell LaLevee, the Flickr user, to collectively pay $150,000.

This case is precedent setting,” Sara Hart Weir, president of the National Down Syndrome Society, said in a statement. “All people with Down syndrome are valued members of society and deserve to be treated with the upmost dignity and respect. We commend the Holland’s for their courageous advocacy and for standing up for all families by pursuing this case.”

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

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The One Truth I’ve Learned as the Dad of a Daughter With Down Syndrome

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On an especially chilly winter morning several years ago, my daughter, Jillian Daugherty, boarded the 3X bus for work and took her customary seat near the front. As the bus filled en route to downtown Cincinnati, riders were forced to stand. One woman in particular – elderly and frail, and wobbling with every stop, start and turn – was having a hard time.

Bus riders at the crack of a cold winter dawn aren’t the most charitable bunch. None moved to help the woman. None but Jillian, who offered her seat.

As Jillian stood, she overheard another passenger saying how cold she was. Jillian removed her coat and gave it to the woman.

I didn’t witness this. Someone on the bus did and sent me an e-mail about it. I’m a columnist at the Cincinnati Enquirer and have written occasionally about Jillian, born with Down syndrome 26 years ago.

“I was in a sour mood this morning, when my bus didn’t show up,’’ wrote a gentleman named Mike Herrel. “I had to wait an extra 40 minutes in the cold for the next bus.’’

Mike struck up a conversation with Jillian after hearing someone call her Jillian. “I concluded I’d just met your daughter,’’ he wrote. “What a terrific person she is. She brightened the day for me and a few others packed into a bus because of her kind actions.’’

My mother once said of Jillian, “She acts like the rest of the world should, but doesn’t.’’

If there’s one truth I’ve discovered as a dad of a daughter with Down syndrome, it’s simply this:

Jillian is good. Her goodness inspires others to be good. She has wielded her Down syndrome like a sword of understanding. She acts like the rest of the world should.

I have no idea what inspired Jillian’s goodness, but I have a theory. People with Down syndrome own an extra chromosome. You and I have 23 pairs of chromosomes, 46 in all. Jillian has three copies of chromosome 21. Trisomy 21, it’s called, the most common form of Down syndrome. 

In “An Uncomplicated Life,” my book about raising Jillian, I call the bonus wiring “Number 47’’. Number 47 defines my daughter in any number of ways, most obviously in her physical appearance. But in ways subtle and vastly more important, Number 47 also rules.

From the book:

“If you believe there are no coincidences, you have to at least entertain the notion that Number 47 has a purpose beyond sadness. If you are anything other than terminally pessimistic, you believe Number 47 contains a lot that makes us good. It has to. Somewhere in that bonus wiring is a connection to compassion and kindness, a plan for how to be better.

“Number 47 isn’t a governor on Jillian’s aspirations. It’s an extra storage tank for all her good stuff.’’

Jillian’s conversations begin with her wondering how everyone else is doing. My mother had knee surgery several years ago. Jillian still asks, “How is grandmother’s knee feeling?’’ My wife’s uncle passed more than a decade ago: “I still miss Uncle Pete,’’ Jillian says.

Hers is a genuine goodness, unfiltered, its sincerity unmarked by guile or agendas. It isn’t just small talk with her. Jillian knows what matters better than anyone I’ve ever encountered: Whom she loves, and who loves her. Her heart is an uncomplicated place with lots of room.

One day when she was about 18, Jillian was home sick with a deep cold. She’d spent the morning in bed, hacking mucous into a small trash basket. I’d rubbed her head and fetched her Kleenex. By mid-afternoon, she’d rallied enough that we went to lunch and the local YMCA for a workout. As we got out of the car to go into the Y, Jillian thanked me for helping her through the morning. Then she said this:

“If you love someone, they’ll love you back.’’

Life essential, purely expressed.

So there’s your insight. There’s the big revelation about what Jillian, my daughter with a disability, has taught me. I’m sure I’m not alone. Knowing my daughter is a blessing. Ask the folks on that bus headed downtown on a cold winter day.

   Paul Daugherty’s memoir about raising his daughter Jillian is available on Amazon.com and on his website at www.uncomplicated.life.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or 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 Share Your Story page for more about our submission guidelines.

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7th Grader With Autism Now a Hero Thanks to SpongeBob Squarepants

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A boy with autism learned a life-saving skill from an unlikely place.

Brandon Williams, 13, was eating lunch at Barnes Intermediate School in Staten Island, New York, when he noticed a classmate was choking on some food, The Staten Island Advance reported. Brandon sprang into action and performed the Heimlich maneuver on Jessica Pellegrino, dislodging a piece of apple from her throat. When asked where he’d learned the technique, Williams credited an unusual source — the cartoon show “SpongeBob SquarePants.”

He picks up on things that most of us would miss, and files it all away in his head, and he can recall it all in an instant,” Williams’ father told the paper. “That’s how he knew instantly what to do. And we’re glad he did. We’re proud of him.”

Brandon and Jessica’s class later had a little party to celebrate his quick thinking.

Hear from Brandon and Jessica in the video below: 

 

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When One of My Favorite Websites Described Me as ‘Dying’

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After rolling out of bed a disheveled mess, I got ready to begin my daily medical rituals: I started my tube feeds, took a couple of fistfuls of medication, did a few breathing treatments, rubbed myself down in Biofreeze and then turned on my laptop. (The laptop obviously isn’t medical; it just takes my mind off how badly I hurt in the morning.) It was going to be a good day! I mean how could it not?

The first thing I saw when my computer whirred to life was my face on front of one of favorite websites. Next to me, my little oxygen concentrator started beeping, alerting me I’d waited too long to take a breath. (How embarrassing. I’d literally forgotten to breathe out of excitement.) I took a nice deep breath through my cannulas and got ready to read my article!

The title read: “Why I Still Want to Looking Beautiful, Even Though I’m Dying.”

Wait a minute, what?!

Dying?! What did they mean dying?! I know I am severely ill, fatally ill in fact, but “dying?” I mean, if we’re being honest, aren’t we all technically dying? It’s just common courtesy not to announce it, right? From the second we’re born, our timer has begun towards our imminent deaths. Death is the one thing humans have yet to find a means of escape from. It awaits each of us at an unknown place and time.

I do not classify myself as “dying” anymore than you would classify yourself as “dying.” Now don’t get me wrong, my death is in the carpool lane, while your death is stuck in rush-hour traffic. But still, I wouldn’t call myself dying. Yes, I have a terminal illness (systemic sclerosis) that will take my life long before I want to leave this earth. One that leaves me strapped to constant hospital stays, appointments, procedures and treatments. One that leaves me in pain more often than not. One that forces me to tote an oxygen tank, a feeding tube and a central line for survival. While I reside in a body that is slowly failing and leaving me with a reduced time to live, “dying” is still not the word I would use to describe myself.

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The reasoning behind my thoughts? (I mean, I’m sure you’re wondering what I consider dying if this isn’t!) The truth is, I have faced death before; it was December 2014. I was in every sense of the term “dying” — lying paralyzed from head to toe in a hospital bed while a nurse suctioned my spit so I didn’t drown in it. There was little hope for a recovery after a sudden onset of an illness called Guillain-Barré syndrome. Doctors were on a constant ebb and flow in and out of my room on the neurology critical care floor during a month-long admission that nearly took my life. Family and friends had driven across the state to say their goodbyes, which I have little to no memory of. The bright lights of the OR, blood, pain, tubes and hopelessness mixed with shear terror are my only memories spanning over that hell of a 24 days as I faded in and out of consciousness.

There are plenty of mental scars (and a few physical ones, too) from that month of “dying” I encountered. Dying changes you as a person, changes your perception and leaves a deep wound that can never be healed. I attended therapy for severe mental trauma to overcome the reality I had, in fact, almost lost my life. It had placed me in a dark bottomless pit that I still now tremble to recall. The memories of acute rehabilitation where I relearned how to sit up, walk on my own, use my hands and get dressed by myself at 23 years old haunt me still. The memories of medical procedures gone wrong (as in botched spinal taps) and treatments that only hindered (as in gave me meningitis) instead of helped filled my dreams for months.

Yes, I was in every way, shape and form “dying” last December. I remember what dying felt like. I remember the feeling of emptiness it brought to the center of my chest, and the way it filled everything with blackness. The fear. I had never before in my life felt like I had lost a battle, but I knew I had lost this one. There was no fight left in me. My body was too weak to continue, and my mind followed.

While I lay paralyzed in that hospital bed, it was as if my ability to fight and to even think about continuing had been paralyzed as well. You can tell when it’s the end, as your mind starts to slip and you can feel it closing in. I was thoroughly surrounded. Somehow, someway I recovered. My body pulled through, and so did my mind… mostly. A piece of me was definitely lost during that admission, something I can’t quite put a finger on. Being that close to death, to actually be dying, is unlike anything I have ever experienced, so dying is not an adjective I take lightly.

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Currently I am “living,” and while my version of living has some extensive differences than the average individual, I still consider myself to be very much alive. I partake in shenanigans with my best friend (Hi, Makanda!) every Friday night. I head to the craft store on Saturdays and buy $30 worth of art supplies to make something I probably could have bought off Etsy for $7. And I go out on date nights to awkwardly watch my husband eat a cheeseburger since I cannot. (Which I find oddly satisfying!)

If I were truly dying, none of these things would be possible. Living wouldn’t be possible. I know this from experience. I no longer feel the pull of death like I did last December. I no longer feel surrounded and crushed by my imminent demise. So no, I am not currently dying because I know what dying actually feels like — and this is definitely not it. I can still do things that bring me joy and still take part in activities that bring me happiness. When I was dying last December, there was nothing but darkness and fear. I had completely lost my ability to do anything but lie hopelessly and wait for death.

I feel fortunate to live while my body slowly deteriorates and not be bound to death like I was last December, even though I am riddled with failing organs and a fatal prognosis. Someday again, I will be dying and lying in a hospital bed with only days left ahead of me. And truthfully, yes, if you want to define “dying” as losing a battle to illness then I am in every sense of the term dying. But personally, I like to call residing in this defective body, riddled by disease, successfully and enthusiastically living.

Follow this journey on A Day in the Life of a Tube Fed Wife.

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