Why I Don’t Mind People Staring When My Brother With Autism Eats

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My family traveled a lot so hotels and restaurants were just part of our lives. Then my brother, Christos, was born and diagnosed with autism at the age of 2. After the diagnosis, I remember how we packed an entire bag of just his food and cooked it in the hotel room so we could take turns going to the restaurant. He ate soup, pasta or rice every day. As he grew, my parents incorporated more foods into his diet, but during the rare moments we actually went to a restaurant, it had to serve pasta.

Christos didn’t care what was on the menu or what the specials were. He didn’t care if there were 10 different types of pasta or if the fish was fresh out of the Mediterranean. He just wanted pasta and tomato sauce. Not bolognese, not arrabbiata and not tomato and basil. Just plain tomato sauce.

Dora Perera the mighty.2-001

At first, we started taking him to restaurants after he had already eaten. But we had to bribe him with iced tea or chocolate ice cream to sit still while we ate. Sometimes it worked but mostly it didn’t. Then we started making pasta at home and took it with us in a plastic box to the restaurants we went to, along with the sauce and halloumi cheese. We were amused when we would see everyone’s jaws drop at the restaurant after we took out the plastic boxes for the pasta, sauce and cheese, especially when it was an Italian restaurant. I grew up with Christos so that was my reality. That was how children behaved for me. I didn’t really understand why it was so weird to others or why people would stare.

After he was done eating, like any child, he wanted to play and explore his surroundings. He didn’t play like other kids. His playground was his mind. So the kid who ate pasta out of the plastic box would then make “funny noises,” run up and down, flap his hands and rearrange the cutlery on the other tables because he didn’t think they were properly positioned.

I get it. I see why people would stare but that’s my brother. That’s my little brother being happy and showing us how happy he is. The thing that got me the most was when parents grabbed their kids and pulled them away from him. He wasn’t trying to attack anyone or trying to stab people with forks. He was an innocent 10-year-old who played differently. He was so excited by his surroundings that this was the only way he could express himself.

As he grew up, it became easier for him to adjust to restaurants. He has a process that needs to be followed. If it isn’t, then there’s trouble. But not for me. The flapping, moaning, jumping up and down or repeating the same word over and over again is my reality; it’s what 17-year-olds do in my eyes. The trouble was for the other people in the restaurant, because he wasn’t sitting at the table, playing on his phone and ignoring his family. Instead, he was hugging us and asking for our attention and affection; apparently, that’s something worth staring at, pointing at and whispering about.

Yes, there are times when we need to step in because the waiter doesn’t understand that all the Coca-Colas in the fridge need to be facing the same way or when he wants penne but they only have spaghetti. But is that worthy of seclusion?

He slowly learned to try other kinds of sauces. He even eats Parmesan cheese now. He eats other kinds of pasta, not just spaghetti. He even eats pasta with fresh cream and salmon. My brother eats salmon! You have to be an autism family to understand the excitement. We don’t take plastic containers with us anymore, and we don’t have to bribe him to sit still. I don’t want him to conform to the world, I want the world to conform to him. Going out to eat is a big deal; it’s a break from routine for us and for Christos and he enjoys it so much. Why should we worry if he’s standing up just because he’s happy. Is it wrong? We have our own restaurant etiquette and people can stare all they want; maybe they’ll learn something.

Maybe they’ll learn everyone deserves a break. It’s OK for a family to treat themselves to dinner when they can’t find a sitter for their son with autism.

Maybe they’ll learn the family sitting at the table in the corner who brought their own food probably spent the entire day worrying about that hour-long outing.

Maybe they’ll accept that happiness can’t be reined in when you’re happy and it’s OK to express it.

Maybe they’ll understand that a 17-year-old boy who hops and skips isn’t a danger to society.

Maybe they’ll learn to accept others, and when they do, their children will learn to accept ours.

Dora Perera the mighty.1-001

Follow this journey on Just a Boy.

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When Epilepsy Changes How You Pack the Diaper Bag

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PicsArt_1438811680107 I was sitting in the waiting room outside our doctor’s office with my two sons. My youngest had just been diagnosed with Tuberous sclerosis complex (TSC) after having two seizures at home. He was 3 months old.

With us sat another mom also holding her infant. Our actions mirrored one another as we sat outside the door. We both would stand up and walk around with our babies, sometimes lingering close to a window; one or both of us would be rifling through our diaper bags for a small toy. As I watched her reach into her bag, I wondered, and almost hoped, if she also had to reach around something in her bag that made her baby different, like mine.

It was only a few short weeks after my son was diagnosed and I felt a desperation to cure this unknown loneliness I was feeling. I had two seemingly healthy boys, but despite the outward appearance, my baby had a rare disease that epilepsy unveiled. If that wasn’t disheartening enough, he’d developed a rare form of epilepsy called infantile spasms. Most literature refers to it as “a catastrophic form of epilepsy.” This was always at the front of my mind, especially when I took him out in public. To an onlooker or to someone like this other mommy at the doctor’s office, his seizures didn’t look like epilepsy. My son’s arms and legs would flex out in a rhythmic motion and his trunk would draw into center. It could be mistaken as the “startle reflex” common to infants, but my son would make these motions over and over up to 15 minutes at a time. Each motion was another seizure. I always had to be ready and prepared to intervene if necessary. On this day while looking through my diaper bag, my hand brushed up against the seizure rescue medication. It was always a reminder of how different our lives had become and how lonely I felt.

I watched almost enviously as the other mommy pulled out toys and diapers from her bag void of the rescue medication. I didn’t want to be the only mom who not only worried about keeping her infant quiet in the waiting room, but also worried about whether or not I would be using this medication to stop my son’s seizures. I was sad thinking about the day I removed his toys to make room for a medication that may someday save his life, and I became angry.

A few minutes in the doctor’s office waiting room was enough to remind me that we were now different and nothing would ever be the same. A flood of emotion about all the things he would not be able to do crashed down on me as I sat silently holding my little boy. Epilepsy can be a thief if not controlled. It can take away developmental progress and can deny someone of a normal life even when they’re too young to realize it.

A seizure is not “just a seizure.” It takes over and steals the peace of mind from mommies like me. My baby is now 7 and his epilepsy is still not controlled. Instead of watching his little body silently lose control as it did as an infant, he now falls to the ground and shakes violently. The only noise is the grunting he makes as he struggles against the involuntary movement of his body. And I’m always hoping it’s the last seizure I see.

The last seven years are full of memories like that afternoon at the doctor’s office where I have felt crushed and alone, holding back  tears, surrounded by strangers, silently wishing someone else was just like us and so tired of feeling alone. It’s better than it was,but going out with a child who struggles so much can be difficult.

Please remember this story and remind yourself to be kind to others.

Because at any moment, someone is silently struggling.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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What It’s Like to Walk Into a Building When You Have Sensory Overload

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My Kryptonite comes in the form of sensory data. Smells in particular. This is kind of hard to avoid when you live in this world and you want to be with people, so this is why I am standing outside the museum I used to spend a lot of time in, trying to gather the courage to go inside.

Both feet are firmly planted on my favorite brick in the walkway, the one inscribed with a deceased family member’s name, as I try to gather strength from her memory. Somehow, standing on that brick just so and looking up at the elegant building centers me, prepares me for the onslaught of sensory and mental overload I know is coming. Fragrances, chemical smells, or just the idea that these things might exist in any given place — this is enough to completely short-circuit my system.

I open the door, and I walk in, and I freeze, as I usually do, but I make myself keep going. There are places where smells genuinely overwhelm me. Then there are places where it’s just the idea of smells that overwhelms me, and it takes some time for me to tell the difference between the two. Often, it’s a mixture of the two. My brain is sending me signals telling me how dangerous this is, and anxiety overwhelms my body. People always want to know, “What happens to you when you go in buildings?” and I never know how to explain it. How can you? This time, though, I think I might finally have found the words.

It feels like being under attack. It feels like hyper-vigilance. The sights, the sounds, the motion, but especially the smells and the feelings in your body, come into sharp focus. All I can think and feel is the way my body feels. Everything feels dangerous. I scan the environment looking for threats. My brain gets fuzzy. There is a feeling of pressure on my head. I feel frozen and a little short of breath. It takes effort to move the limbs of my body in order to take a few steps forward. I’ve only gotten halfway down the hallway and I already feel like I’ve ran a marathon. I wonder if I can go any further. I don’t want to stop. I’ve come this far.

I stand in place and stare ahead, begging silently for someone to offer comfort, for something to take me out of this increasingly intolerable inner hell. I try to smile and be companionable to the people around me, but all I can manage is to look suspiciously around me, trying to suss out danger. I take a few steps. There’s no one familiar around. No one to act as point of refuge. Everything looks different. I know if I can just get in to the other room, the person I’m looking for might be in there. I try to ignore my thoughts and move forward slowly, each step feeling like I’m wading through molasses, each step an effort.

I walk through the door of the room to the right, thankful beyond belief there are people in there so I don’t have to go to the room I’m most uncomfortable in. Then, with utter relief, I spot the person I feel most comfortable with and walk over to her, knowing she’ll know what to say, and she’ll realize how hard it was for me to be there. She hugs me and calls me sweetie, and relief floods me. Words are hard and thick but they come out, so grateful to have a home. She has to leave, though, and rubs my arms before leaving. I am grateful for the affection, but nervous about finding someone else to talk to.

Someone recognizes me and says hello. She has a compassionate energy about her. I forget all my usual manners and ability for small talk, all the superficial questions that people use to create conversations with strangers, and start babbling about how I haven’t been here in five months and how nervous I am. Then I backtrack and ask where she’s from and try to be “normal,” but the words just don’t come and I can’t think of what to say to try to act casual, and she’s telling me that I’m doing fine but I can’t quite believe her. She leaves, and then I see someone I know from somewhere else. He’s friendly and he feels more like an anchor. He asks if I want to go upstairs with him to the service. I decide to,  and manage to sit through the service, the thoughts in my head as usual taking over about 10 minutes in, but managing to keep it together long enough to stay.

There is no opportunity for socialization afterwards, but the guy I sat with offers me a ride home and my heart feels full for having been noticed and cared for. I decline because I realize I can’t handle a new-to-me car and the walk will do me good. I go to an eatery I like hanging out in because I know I need social interaction to deal with the emotional fallout of having gone in a challenging building, and going to my apartment will make the emotional fallout intolerable. It helps me feel somewhat safe and stable again.

As I walk from the museum, I am aware of the feeling of not being able to breathe well, of feeling stiff and agitated and like my internal organs are all squeezed up against each other, but I wonder, was it worth it this time? This time, I think maybe. If this is what I have to do to fill the emotional dead space in me, if this is what I have to do to fill the aching loneliness and emptiness that makes getting up in the morning and living in this body such a challenge, then maybe I can do it. It just would be nice to occasionally have days that don’t involve coming to terms with the non-functionality of my body, but since I don’t seem to have a lot of options, I’ll try my best and write about it after to cope with the emotions from it.

Or as they say in Latin,”Veni, vedi, veci.” I came, I saw, I conquered.

Follow this journey on Aspie From Maine. The author welcomes comments from others who can relate to her struggle; email her at [email protected].

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 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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New App Lets You Talk About Dark Times in a Judgment-Free Zone

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While some studies suggest the overuse of technology may be linked to depression, one networking app is using the powers of social media for good. TalkLife, a peer-to-peer support app, builds a safe, supportive community for people to share their true feelings instead of hiding behind filters.

In 2012, Jamie Druitt, 48, from London, created TalkLife after dealing with his own mental health issues.

“I started to wonder, ‘Where do young people go to talk about dark issues in a safe space?'” he told The Mighty.

Screen Shot 2015-08-07 at 11.22.36 AM Although there’s an abundance of social networking sites, few are conducive to sharing openly. Instead of using social media to maintain a facade of happiness, Druitt harnessed the power of technology to create a space for people to anonymously share their thoughts and offer support.

IMG_0897 (5) TalkLife is free and allows users to connect with people across the world and share the ups and downs of life, including self-harm, suicidal thoughts and depression. It’s geared towards younger users and helps them share their feelings without the fear of being judged. Although the majority of users are young women in the United States, people connect from all over the world.

But Druitt describes TalkLife as an early intervention app, not a substitute for therapy.

“It’s often the first step to talking to a professional, but peer-to-peer isn’t for everyone,” Druitt said. The app has a list of mental health resources and trained volunteers moderate it. Volunteers go through a screening process and are usually drawn from the TalkLife community.

“[We’re] bringing the call center mindset into 2015,” Druitt said. “It’s about people giving each other hope.”

 If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

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When I Learned to Trust My Son With Down Syndrome at the Lake

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This weekend, I took Evan, my 4-year-old son with Down syndrome, to a beach at a lake in the Poconos. We’ve been there before, and as usual, he loved the water. This summer, we’ve spent a lot of time in pools and the lake, and Evan has been gaining confidence in the water, swimming with a floatation device and putting his face in the water without taking in water.

This time at the lake, it seemed like he was on a mission. He walked next to the rope, heading toward deep water. I followed him, giving him some freedom, but kept close enough that if he fell or needed help, I’d be there.

Evan kept going, and I encouraged him to turn around when he got to a point where the water was up to his shoulders. He wasn’t very good at listening to my instructions so I would turn him around myself. After we repeated the process a couple of times, he gave me a look that said, “Mom, I’ve got this.”

Julie Gerhart-Rothholz the mighty.2-001

I’ve seen this look before. It usually means, “I’m about to do something I think you’ll want to see.” So the next time I let him go and trailed closely because I was wondering where he was going and what he was going to do. Again, he walked next to the rope, going deeper and deeper until the water was up to his shoulders. And then he did it. He jumped up, kicked his feet and moved his arms at the same time. He was treading water. It lasted only a few seconds and then his face went into the water. I picked him up and put him on my hip, and he raised his hands in the air and said, “Yaaaaaaaaaaayyyyyy! Swim!” He was smiling with his whole body, and he immediately got down and treaded water again.

Evan treaded water about a dozen more times, each time lasting a few seconds longer. Some might look at that and say it wasn’t much, but to Evan and me, it was huge. And once again, it reminded me my son may have Down syndrome, but he’s just like me. In my life there have been some things — like trigonometry — that I didn’t understand, but one day it just clicked and I mastered it.

With Evan, I’ve seen this process over and over again—with walking, jumping, climbing the stairs, even with speaking some words. He spends time figuring things out then he does them and repeats what he’s done several times until it becomes easier to do, celebrating the fact that he’s done it each time.

This experience with Evan also reminded me I sometimes need to do just what I did in the lake: trust my son, but follow behind him at a safe distance, giving him the freedom to try something new.

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They Told This Man With ALS to Quit The Race. Here’s Why He Didn’t.

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Two months after his Amyotrophic lateral sclerosis (ALS) diagnosis in May 2013, Derek Hogg ran the Strike Out ALS 5k in Chicago. His time? Twenty-two minutes. Fast for a fit firefighter, and especially fast for a man with ALS, a disease that affects the nerve cells in the brain and the spinal cord, according to the ALS Association.

“When I first got diagnosed, I didn’t even know what ALS was,” Hogg told The Mighty. Jump forward two years, Hogg knows all about the condition, especially how it affects his body. His disease’s progression has made it difficult for him to walk without assistance or even hold his cellphone. Despite this, he wanted to continue the tradition of running a 5k in July that weaves through the Chicago White Sox parking lot and baseball field for the third year in a row. The Strike Out ALS 5k benefits the Les Turner ALS Foundation.

Hogg’s wife Holly and his doctors advised him against participating this year, worried he’d fall on the course. His loved ones suggested he use his motorized scooter to complete the 3.1 mile race.

But Hogg’s oldest son Paxton, 3, saw past his disease and encouraged him to continue the tradition by running the race. “If you think I can do it, I can do it,” Hogg recalls telling his son.

ALS1
Via Les Turner ALS Foundation

He started out the race pushing Paxton in a stroller, using it as support. A quarter of a mile through the race, Hogg realized he was the only one left at that point on the course. Even the people walking the route were long gone. “It was pretty barren. Just me and my son in the stroller,” Hogg told The Mighty. “He wanted to know… where did everybody go?”

Half a mile in, Hogg apologized to a race volunteer for his lack of speed. The volunteer assured him they would wait to take down the course until he finished. After an hour and one mile in, Hogg saw his dad and mother-in-law. They urged him to quit or at least sit down and rest.

“I kept my head down and said ‘Nope, I gotta finish,'” Hogg told The Mighty. “At this point my legs started to give out. I knew if I sat down I wasn’t getting back up.”

Hogg was confident he could finish the entire race, but a medic along the route urged him to make a turn to cut the distance and finish in the next half mile instead. Hogg knew he’d be on the course well into the night if he didn’t follow the medic’s advice.

As Hogg trudged onward, he felt his body was past its limit.

“I didnt look up. I was concentrated on one step at a time,” he told The Mighty. His concentration was so deep, he didn’t even notice the friends, family and strangers loudly cheering him on until he crossed the finish line.

Hogg knows he didn’t break any records running the 5k; it took him two hours to complete his course, but he hopes his determination will inspire other people to give their 110 percent.

“If you really put your best foot forward, you never know what the end result will be,” he said.

ALS2
Via Les Turner ALS Foundation
ALS3
Via Les Turner ALS Foundation
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