Dear Anyone Dealing With A Diagnosis, I Want You to Do This One Thing for Me

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I want you to do something for me.

Cry. Write. Sing. Paint. Crochet.

Whatever it is you do to let it all out when you’re frightened or hurting inside.

Promise me you will?

I’m not asking this in reaction to something bad that happened today or yesterday. I’m asking because this autism journey – as an autistic person, an autism parent or carer, as an autism sibling – it can be tough. Sometimes it feels like it’s tough all the time. You need to be strong to get through it.

But what do we mean by “strong”? I spoke to someone who felt like “strong” meant they shouldn’t let their emotions out, they shouldn’t give voice to their fears because that would weaken them and rip them apart.

Maybe. Or maybe that’s what happens if you keep these heavy things bottled up inside, allowing the pressure in the bottle to rise so much that it blows the cork right off the top and everything inside spills out.

Messy. Uncontrollable. Explosive.

I see “strong” as something slightly different. I see strong as not being afraid to give form to the things that scare us – to draw them, write them down, talk about them. It makes them more real and tangible, but it’s only when they become real that we can really deal with them.

I remember the day that my husband and I decided we were going to push for Melon’s autism diagnosis. It was a hot, sunny day. We hadn’t slept more than a couple hours in a night for four months due to Melon’s sleep issues. We’d just watched Melon have her fifth or sixth meltdown that day. She was in torment. We were in torment. We were falling apart. We sat in the back, slumped on the garden furniture, lost in a miserable silence.

My husband looked up and said, “Maybe, when the services open again in September, we should ask them to screen for autism, just to… to… rule it out… Do you think, maybe… it is autism?”
And I remember saying, “I do. I think she is autistic”.

And there it was. I said out loud to him the words we’d been dreading to hear from a professional. And as I said it, I broke down crying for maybe two minutes. I knew, beyond a shadow of a doubt, it was true. And then, suddenly, it didn’t feel so big. It wasn’t just a nameless, shapeless fear ricocheting around in my head anymore.

We could begin to deal with this reality.

We still are. It’s an ongoing process. There are things every day that make us worried, scared and sad. But we can’t carry them around forever; we have to put them down somehow or they will crush us. We deal in different ways. I write. I find that writing is a way of me taking control of my thoughts and feeling, setting them into some type of order and reason, reflecting on them. My husband is more of a talker. Melon is an artist; she draws it out.

So, go write, jog, knit, talk to someone, type an email that you only ever send to yourself, hold your pillow close and talk to it, lock yourself in the bathroom at work and have a good hard sob for a couple of minutes. Whatever you need to do to give form to your fears, make them tangible and put-down-able. You might just find that you are stronger for it.

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‘Spectrum Cafe’ Offers the Autism Community Much More Than a Cup of Joe

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A school for children and teens with autism in Lorain, Ohio, is serving up more than lunch at a new restaurant called The Spectrum Cafe. The establishment is also serving up opportunities for members of the autism community.

The Spectrum Cafe is designed to raise funds for the Spectrum Resource Center and School, a day program for students in grades PK-12+ who have a difficult time in a traditional school environment. The cafe provides employment opportunities and job training for students and graduates of the school, and all proceeds from sales will go towards equipment such as iPads and computers, 19 Action News reported.

It’s great that there’s a program here that brings awareness to autism,” Eric Veard, a customer, told the outlet.

Learn more about The Spectrum Cafe in the video below:

19 Action News|Cleveland, OH|News, Weather, Sports

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The Day I Found Out I Have Sensory Processing Disorder

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It was a humid August afternoon in 2010 when I learned that I had Sensory Processing Disorder (SPD). I sat like a giantess on a small stool spilling over a tiny child’s drawing table facing my new occupational therapist. I loved everything about her office – the soothing blue paint on the walls, the tangle of equipment, even the soap-shaped deep-pressure brush she pressed into the palm of my hand. Hey babycakes, I thought to myself, there’s a place for you after all! 

This positive speak surprised me. It was in direct opposition to the way I’d treated myself most of my life when it came to my differences. While I was (am) bright and bubbly on the surface – always quick to crack an absurd, witty joke or let a wide smile spread across my face – my inner monologue was filled with hate and fear. Stop being such a weirdo and just do it already, I’d think as I struggled to leave a safe space and face the cacophonous, blinding, undulating streets of New York City. You’re useless, you can’t handle anything, I’d ruminate, slumped down and hunched in tears as I missed yet another family outing, you embarrass me, you are an embarrassment to everyone. And then there was the speaking I did about and to my related anxiety — the pleading, the desperation. Please let me get through this without losing it, I’d whisper as I transferred from bus to subway to train on the way to work. Please leave me alone for once. I can’t live like this.

On the day of my diagnosis, I had this sense that my SPD was finite, that the nameless burden I’d been carrying around for 27 years would slip from my shoulders, like a cape to the ground, and I’d feel lighter, freer. I didn’t have to be scared anymore. I didn’t have to hate the golden-brown-haired woman with kind, green eyes who stared back at me in the mirror. She was aces in my book; she finally had a name for her foibles.

It was about a month into my diagnosis that this new image of perfection was shattered. It didn’t matter where I was standing or what I was trying to do, who was flanking me or the time of day – I had a sudden sensory overload and went into the all-too-familiar shutdown mode. My body detached from my surroundings and I felt scared and ashamed. Where’s your special diagnosis now?! I screamed from within, Who cares what it’s called if you can’t do a single thing to make it go away?! I knew the truth – I wasn’t a young child and my brain wouldn’t rewire quite the same way as a child’s might, if at all. My negative internal voice went from punishing to bullying. Now, when I “failed” at an activity, I essentially “failed” twice — because I was once incapable and because I was still incapable, in spite of having the right diagnosis. My confidence plummeted and my anxiety heightened.

In psychotherapy, I worked on reframing my thoughts – taking them, turning them on their head and looking at them from a new angle.

There are so many things I still can’t do! I’d say aloud during a session.

Ah, my therapist would say, but there are so many things you can do.

I’d continue. It’s so scary though when I can’t process the sensory world around me.

Scary, yes, she’d respond, but you can’t be hurt, not in any significant way.

In time, I internalized this new voice – this gentle, positive position on my status in the world. I allowed myself to believe in the possibility that my perceptions could change how I feel. I worked on acceptance. No, my SPD wouldn’t go away. I’d probably live with the agitation and discomfort, the deep and inexplicable internal pain in the face of fluorescent lights and falsetto voices for the rest of my life, but I’d remove my own internal stigma to face personal sensory challenges and celebrate my most complex achievements – all without passing harsh judgment on myself and my neurology. If I was going to live this sensory life, I realized I had to make peace with who I really was, SPD and all. Maybe it’s not such a bad thing to be so sensitive, I thought to myself, to notice things that others don’t, to read people and situations without words, to feel deeply and to care deeply. Maybe I can cut myself some slack. I was owed that much.

If I could go back to the day of my diagnosis, I’d tell myself to be patient – that in time, I really will learn to love who I am regardless of my diagnosis – and sometimes even especially because of my diagnosis. After all, I wouldn’t be me without my SPD.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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Watch a Spinal Cord Injury Patient Demonstrate an Invention That Could Help People Relearn to Walk

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Ekso Bionics developed an exoskeletal system that can help stroke and spinal cord injury patients walk again, Live Science reported.

Called the Ekso, the device is a wearable bionic apparatus that enables people with any amount of leg weakness to walk by providing additional power to the limbs as needed. Patients can walk for much longer without tiring, allowing them to reacquire muscle memory. The Ekso can also send differing amounts of strength to each bionic limb, making it useful in helping stroke patients who may have lost differing amounts of muscle control on either side of their bodies.

For people with spinal cord injuries, such as Shane Mosko (in the video below), the exoskeleton is useful for rebuilding strength and staving off any detrimental side effects of constantly sitting. For Mosko, a big draw was being able to stand and look people in the eye.

“I’m not going to be confined to my wheelchair. I’m gonna be standing, I’m gonna be walking, I’m gonna be able to work on my recovery,” he said during a demonstration at the 2015 Consumer Electronics Show in Las Vegas in the video below. “Just being able to do the same things you used to before your accident. It’s a game changer.”

Watch Mosko demonstrate the bionic legs in the video below. 

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How I Got My Favorite Celebrity’s Cell Phone Number

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Have you ever met a celebrity? You know — someone who you admire so much? Someone who, in your eyes, can do no wrong? Someone who gives you butterflies when you see them?

I’m lucky enough to have met a celebrity. I met her 11 years ago, and to this day, we keep in touch almost daily. I even have her autograph. Every time I see her, my stomach does a little flip, even after all those years. I have her cell phone number and can call her anytime about anything, good or bad.

By this time you’re all probably dying to know who this celebrity is, right? You probably think how lucky I am to be in close touch with someone so wonderful. OK, I’ll reveal my secret. My celebrity, the woman who I admire so much and who gives me butterflies, is my boys’ special education preschool teacher, Ms. Monica.

I first met Ms. Monica when my then 3-year-old was assigned to her class. You see, he was diagnosed with autism, and I thought my world had come to an end. At that time, Coby wasn’t making eye contact, wasn’t talking and was hardly communicating. In her firm yet gently manner, Ms. Monica saved — yes, saved — my Coby’s life. He blossomed and grew and thrived, and by the time he went to kindergarten two years later, he was mainstreamed. Today he’s in eighth grade with no interventions needed. I truly believe this is all because Ms. Monica was his teacher when it mattered.

Enter my 4-year-old, Liam. When Liam was diagnosed with autism about a year and a half ago and was ready to enter the preschool system, I knew in my heart that he had to go to Ms. Monica’s class. I called her and we chatted, and when the time came I made a request for Liam to be placed in her class. When Liam started preschool, he had only a handful of spoken words, and those he had were impossible to understand. Liam had no social skills, no self help skills and flapped so hard I swore he’d fly away.

Tomorrow I’m registering Liam for kindergarten — a mainstream classroom. And I’m transferring him to the same school that Ms. Monica works at, even though it’s not our base school, so she can keep an eye on him. Ms. Monica will forever be my favorite celebrity. To me she can do no wrong. She’s my hero, the one who gave both of my boys a chance. She never gave up on my boys; she cheered them on. She starred in the movie that is their lives. For that I will forever be thankful.

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These Photos of a Boy and His New Helpful Companion Will Brighten Your Day

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Zachary Steinbeiser, 8, has certainly been dealt more than his fair share of obstacles in life. Born with a neural tube defect, which hindered his brain’s development, he’s also autistic and has both ADHD and epilepsy, according to Life With Dogs. But things just got much brighter for Zachary — he now has a bushy-tailed friend to help him tackle the everyday challenges of living with his difficult diagnoses.

The thing Zachary wanted more than anything in the world was a dog. So, last month, The Seeing Eye and The Make-A-Wish Foundation teamed up to pair him with one. Zachary and his parents traveled from their home in Lansdale, Pennsylvania, to The Seeing Eye guide dog school in Morristown, New Jersey, where Zachary first met Whitley, a 2-year-old labrador/golden retriever mix. Zachary and Whitley became fast friends, and now Whitley is the latest (and furriest) addition to the Steinbeiser family.

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“We’re pleased to be able to match the Steinbeiser family with a bright-eyed, furry new addition to their home,” Seeing Eye Director of Canine Development Peggy Gibbon said in a statement, according to Montgomeryville-Lansdale Patch. “Whitley is an exceptionally sweet and loving dog who will give Zachary many years of friendship and devotion.”

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Zach

Photos courtesy of The Seeing Eye

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