Why We’ll Never Stop Going Out in Public

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I frequently see posts and articles about public outing nightmares with children with autism. I relate to almost every single one of them.

I’ve noticed that most of them aren’t about a meltdown at Disney World; it’s almost always the grocery store or some other mundane outing. An outing you can’t avoid. We all have to buy groceries. We all have to drop our children off at school. We all have to go to medical appointments. The list goes on and on. Lining up childcare every time we have to do one of these things just isn’t realistic and can get expensive. Not only that, but some of our children have such severe separation anxiety that leaving them with someone is equally as traumatic as an outing.

Anytime we go into a store, our son gets highly anxious about the loudspeaker and the beeping at the registers — so much so that he usually throws things when it’s time to check out or covers his ears and cries when they use the loudspeaker. He also gets upset if there’s another child crying (even if that child is three aisles over), and it can send him into a tailspin from which we cannot always recover.

People outside our world might wonder why we ever go out with our children if it isn’t completely necessary. Why do we subject ourselves to the stares and comments that cut so deep? Why don’t we, for instance, leave our son at home with one parent and the other parent can take out the other two? Why don’t I always do my grocery shopping while all three children are at preschool? Why do we attempt the park when we know the end result will probably be dragging a kicking and screaming child to the car?

I know our son would be perfectly content to sit in the living room and play with all of his favorite toys over and over again. His anxiety would be next to nothing, and his overall mood would improve. When we were home sick last week with few outings and next to no transitions, our days were nearly meltdown-free. So why don’t we homeschool, get a sitter for all our necessary outings and stop all our therapies?

First of all, staying shut away is not an option in the real world. If we expect our children to mature and learn coping mechanisms, they need to practice. If we expect them to go to the grocery store and buy food for themselves someday, we cannot avoid noisy places all together. We have to work through the experience, even if it does appear to be disastrous to onlookers. Sometimes our outings might look like disasters but were actually ten times better than the last one, and we bask in the joy of that progress.

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Our children (both our neurotypical children and our son on the spectrum) deserve to have fun too. Don’t get me wrong, we plan our outings carefully and generally try to work them so we don’t have much waiting. We try to make it as predictable as possible. But even so, we cannot plan for every circumstance, and if we have to wait a little longer than planned or go a different direction, you might have to witness a meltdown.

But it’s worth it. It’s worth it, to me, to risk him crying and screaming because we’re leaving the zoo after we’ve already walked through it twice, if the benefit means watching him jump up and down with excitement at experiencing a new animal. It’s worth it, to me, to get out of our house and see him have a better store outing than the last time or to see him try a new thing with his siblings by his side and enjoy it.

So there you have it. We cannot live in fear of the next meltdown; our children would never experience the world. We cannot hide our children to make the world feel more comfortable; no one will ever learn about or accept their differences. We cannot stop going out anymore than we can stop living. And we will never stop.

This post originally appeared on From the Bowels of Motherhood.

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Why I Don’t Care If You Love or Hate Jenny McCarthy

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rebecca When my son was diagnosed, I knew little about autism. I knew the autism markers — doesn’t answer to his name, doesn’t point, doesn’t babble, loss of skills, poor eye contact. You know the list. I knew those things because he presented 90 percent of them. By the time the diagnosis came, I knew it was probably autism but had no clue what that diagnosis really meant.

I remember the developmental pediatrician saying, “You were right, Mom. He is somewhere on the autism spectrum.” She didn’t look up much, wrote a lot and almost as quickly as the appointment started, it was over. She gave me a results print out, a parent disclosure of all the testing and evaluations, and that was about it. She sucked all the air out of the room, and then poof — she was gone.

I’ll skip over the hyperventilating and crying that happened in the parking garage — me outside the car, him inside, blissfully unaware of my complete devastation. Yes, initially, I was broken over autism. I had no idea what I was going to do with this child. No direction and the worst images in my head. My depression was intense, and I felt so lost. I knew I couldn’t stay there. As a friend said the other night, “I couldn’t unpack in the grief stage.”

Instead, I went to the university. Meaning, I went to Google. I googled a cure for autism. “I have to help him,” I thought, “I have to cure him. I can’t just let him slip away from me. This kid is my heartbeat. He’s everything good, my whole life. I can’t just let this happen.” Of course Jenny McCarthy popped up. Of course she did. While many people in this community hate her, I don’t. I don’t hate anyone. While I don’t agree with everything she supports, says and does, I learned about diet intervention, the beginning of gut health and some other useful things from her. In the beginning, I was glad to find her.

As we moved through the early years of our journey, I researched a lot more. I spent hours reading, deciding, comparing and rethinking. I was extensive in my research, and I implemented interventions I felt would be beneficial for my son. He went gluten-free, casein-free, soy-free and eventually grain-free. We added vitamins, minerals, probiotics and fish oil. Natural things to improve his health. We saw improvements, and if we didn’t — we discontinued the intervention. Fairly quickly, I moved away from the idea of “I have to cure him.” For me, it wasn’t about a cure anymore. It was about health, quality of life, happiness and enjoying the journey.

It was a time of growth, not only for him but for me. I learned to accept a lot — from him, from myself, from this community. The community taught me lessons you can only learn the hard way. In turn, I tried to become a member of the autism community I wanted to meet. Why? Because it’s important, needed, and while we don’t have to agree, we can be a supportive community.

So, when I say gluten-free/casein-free improved my autistic son’s health — I’m not saying it’s for all people with autism. It works for my kid.

When I speak about vaccines, I’m not advocating for or against vaccinations. I’m telling you my personal experience with them.

When I speak about applied behavioral analysis (ABA), it doesn’t mean I’m only about curbing behaviors. It means done intelligently, compassionately and with a full team, I’ve seen it help some children with autism. I respect my son, his feelings, his needs.

So many issues become a battle zone for parents. It doesn’t have to be that way. I can respect you without agreeing with you. Compassion for one another, empathy and support without harsh judgment are some of the most important things we can give to one another. Every journey is different and requires a different approach. While our journey and views may be on opposite ends of the spectrum, we’re still part of this community — the autism community.

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To the Paramedic Who Said the Right Thing When My Son Had a Seizure

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In 2010, I gave birth to a healthy baby boy. Although I’d suffered some complications during pregnancy, I was thrilled when I delivered my beautiful son that autumn evening nearly five years ago. I became a stay-at-home mom shortly after he was born. Our adventures began. I was a typical new mom. I had many of the same fears and insecurities I often hear other moms talk about. I was no different, and somehow that knowledge gave me peace on days when I’d feel overwhelmed or tired.

Although we live in the same city as my mom, I became reclusive with my new baby and found that I began to isolate myself. But I loved the alone time I had with my brand new son. Watching him grow and develop gave me a thrill I’d never experienced. I’d look at him in awe because I couldn’t believe I was his mom. How did I get so lucky? This went on a few months until I realized my son needed to interact more with people and other kids, not just his mom and dad.

When he was a year old, we started joining groups and making weekly visits to my mom’s. One morning on a visit to his “yia-yia,” I noticed he wasn’t feeling well. He had a runny nose. He seemed not himself. After registering a fever, I gave him fever reducer. As I began to pack up his things to go back home and as my mom carried him, I noticed he had an odd look in his eyes. His body grew limp, and he started convulsing in my mother’s arms. I grabbed my son and cradled him, trying to get him to react. We called 911, and I remember instinctively praying the over and over in the loudest voice I could muster as we waited for the ambulance to arrive. I needed God to hear my plea to not take my son.

I don’t know how much time passed; it probably wasn’t very long. The ambulance arrived with three paramedics. By that point, my son had started to come back to me. The older paramedic seemed to have the most experience, and after examining my son, he confidently told me he thought my son had experienced a febrile seizure and he’d most likely experience it again. All this information was new to me. Not only had I just witnessed my son endure a terrifying experience, but I was left feeling so unsure and fearful about what else to expect. I stared at the paramedic as he explained to me how many times he’d seen other babies go through this, and how there’s nothing to be afraid of; he barely finished his words when I began to sob. It was the sort of heartache and pain that releases what seems like every teardrop your body has. I somehow felt like I’d failed my son for allowing the seizure to invade his body.

I remember the paramedic extended his arms to me and gave me a hug as he told me, “You did everything right. Your son is going to be fine. You don’t need to be afraid.”

At that moment, those words were all I needed. My son would go on to experience countless seizures in the course of the next year of his life. When he turned 2, they disappeared just as quickly as they’d come. Now, three years later, my son is healthy and thriving.

I didn’t get that paramedic’s name, but I still remember his words. They come in handy, and I apply them on those days when I don’t feel like a good enough mom.

You did everything right. Your son is going to be fine. You don’t need to be afraid.

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For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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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How ‘Pitch Perfect’ Reminded Me of My Journey With Autism

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When I was growing up, I dealt with many challenges when it came to motor and sensory issues because of my autism. I also had emotional issues because of my limited speech growing up. That’s why when I was 6, my parents got me involved with a multi-handicapped summer camp to get me interacting with kids. This was when I first had the opportunity to sing.

I remember singing one of the biggest songs of 1994: Elton John’s “The Circle of Life.” I got through about one chorus before I started crying from stage freight. Being in front of an audience full of strangers for the first time was overwhelming, and I felt overloaded.

The thing was, though, no matter how overloaded I felt then, I still loved the music. The next year I came back to camp and was ready to belt my heart out, and that’s exactly what I did. This led my parents to get me involved with theater programs for children with disabilities. I would end up doing drama for the next 12 years; it became part of my therapy.

In college, I began to take another look at how I could tie my love of theater into being an autism advocate. I started consulting for films starring characters with autism, like “Joyful Noise,” starring Queen Latifah and Dolly Parton in 2012. I felt like this was my big break. Then, later that year, I got to reflect on my journey with autism when the movie “Pitch Perfect” came out.

“Pitch Perfect”  is about a girl named Beca (played by my crush, Anna Kendrick) who comes to college ready to be in her own little world of music and the hope to one day moving to Los Angeles to become a DJ. She’s later convinced into joining an all-girl a capella singing group and facing off in collegiate competitions. To be honest, I had minimal expectations for the movie. However, I was shocked by how much I could relate to Beca. I was drawn to her love of music — but I was also drawn to her because she felt exactly like I had when I started college.

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I wanted to be in my own little world with my music and my activities, and it was hard for me to branch out on my own. My saving grace freshman year, though — like Beca — was joining a group on campus where I could make my first friends. I was an outsider who found my niche later in my story.

While I sat in the movie theater as the credits went by, I couldn’t help but think about how Beca had tried something new and came out of it with a different outlook on life. It really made me think of what my life would have been like if I hadn’t tried theater. Would I be as confident as I am today? Would I be a national speaker?

What “Pitch Perfect” might have reminded me about the most was what Dr. Temple Grandin, one of the leading autism-advocates in the field always says — that you need to stretch these kids in our community. You have to show them what’s out there for them and try to help them reach to the stars. My parents put that mentality into me at a young age with the “three strikes rule.” I would have to try something three times and after that, if I didn’t like it, I could give it up. No questions asked.

I hope for our autism community that we can keep that mentality. The potential is out there for many of us to do great things as we progress as individuals but also as we learn more about autism.

Now let’s look forward to “Pitch Perfect 2” coming out in May!

This blog originally appeared on Kerrymagro.com.

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This Candid Facebook Post Perfectly Explains Why We Need to Talk About Mental Health

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I have a friend who’s as wise as he is funny. Ely Henry recently introduced me to a stigma-fighting day called Bell Let’s Talk. On January 28th, each time people used the hashtag #BellLetsTalk to open up about mental health, Bell donated 5 cents toward mental health initiatives in Canada. This amounted to more than $6 million in one day. In the spirit of the day, Ely posted this candid message on Facebook that makes a brilliant point about how we view mental illness:

Alright, it’s #‎BellLetsTalk day. So let’s talk.

I have Dysthymia. It’s basically Diet Depression.

I’ve been treating it for the past year and a half with regular therapy and some medication.

These are steps I wouldn’t have taken if I hadn’t started talking to friends about how I was feeling.

The person I have to thank the most is Torre Catalano. I was complaining to him about… oh, f***, everything probably… and he told me I should consider seeing a therapist. 

When I said I didn’t have the money, he stopped me and asked, “If you had a tooth that was rotting out the side of your skull, would you pay $70 to get it fixed?” I said that, well, obviously I would. He stared at me for a beat and shrugged his shoulders “So…?”

I called a therapist a few days later.

If you are in pain. If you are scared. If you are anxious and you feel like there’s nowhere to go — please, please talk to someone. It’s a tough road to go down but I promise you it will be worth it.

I’m still struggling. I will always be struggling. But when I look at where I am now compared to a year and a half ago? I’m kicking ass. I can’t wait to see where I am in another year and a half.

Much love, everybody. 

Talk talk talk.

(In typical Ely fashion, he followed up his serious Facebook post with a funny compilation of cute dogs.) But the bulk of what Ely posted resonated with more than 100 of his Facebook friends. His message needs to get out even further — to our Mighty readers and beyond. Because a day like #BellLetsTalk day should be more than 24 hours long.

10943523_10152536190951493_399485144_n  Ely Henry is an actor in Los Angeles. You can follow his witty tidbits @ElyHenry.

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What You Can Learn From the Scariest Day of My Life

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May 12 was the scariest day of my entire life.

My mother called me on my cellphone while I was at work and told me my son, Ethan, wasn’t acting right. His lower body was ice cold, and his upper half was on fire. He was going in and out of consciousness, and his eyes looked swollen like half moons. I told her to put him in the car and meet me at Winchester Hospital. She ended up having to pull over on the way there and call 911. A friend from work drove me to Winchester, and I sobbed the entire way. Ethan’s dad flew down from New Hampshire, and as soon as the ambulance arrived at the hospital, they took us to his room.

I saw about seven people around Ethan. I took one look at him and lost it; he was pale as a ghost, moaning, and every muscle on his body was twitching. When he did manage to get something out, it was gibberish. I just kept yelling, “Help him! Somebody help him!” Ethan’s eyes were glazed over, and he continued to twitch. The ER doctor said Ethan needed to be transferred to Mass General. As we waited for the ambulance, I stood over my son, rubbing his head and crying. I had no idea if he could hear me, but I told him how much I loved him and that he’s the funniest, happiest little boy I know. My mind was racing, and I kept thinking, Please, God, don’t take him yet. He has so much more life to see. He isn’t ready to go. I’m not ready to let him go. It’s not supposed to happen like this. I expected more warning. Please don’t take him.

The ambulance arrived. I felt like I was in a dream. I was lightheaded. All I could think was that Ethan was never going to wake up again and if he did, he wouldn’t be the same.

At the hospital, Ethan’s eyes remained half open. He already looked better and recognized me. Part of the neurology team came down and asked a bunch of questions over and over again. They said it didn’t sound like a seizure, but they ordered an EEG just to rule it out. One of the residents asked what Ethan’s official diagnosis is and when I told her, she said she’d never heard of it. All I could think was, We are in a world renowned hospital and we are teaching them about a disease. Shouldn’t it be the other way around? 

We waited all day as Ethan had blood drawn and an EEG done. He slowly became more and more alert, and we knew he was on the mend when he farted and laughed. He loved having Doritos fed to him and that he got to drink Sprite. He asked so many times to go home. Every time a nurse or doctor came near him, he cried or told them to go away.

Finally the results came back; they found no seizure activity and all his blood work was normal. We still have no clue what happened. Maybe progression of his diseases (muscular dystrophy and leukodystrophy) or just a one-time thing. I’m praying it’s the latter. We were able to take him home, but we have to go back to the neurology department soon. They upped one of Ethan’s medications and told us to call 911 if his mental status changed again.

Ethan and I were up all night. His body wouldn’t stop moving, and he couldn’t stop talking. He became aggressive a few times, which is not like him at all. He finally fell asleep for a few hours, and when he woke up, he was pale and his arms were having tremors. I held back tears as he tried to feed himself cereal and couldn’t even get the spoon in his mouth. He looked at me as this was happening and said “Mom, I just need patience.”

I was taken aback. It’s true; if he wanted to feed himself independently, he would need extra patience today. He wouldn’t let me feed him, and it took him over half an hour to eat a small bowl of cereal. I had to refill the bowl a few times because a lot fell on the floor, but he finished his Frosted Flakes. He’s slowly getting back to himself, still weak and shaky but he’s still laughing at everything.

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When people tell me they’re sorry this is happening to us, I tell them not to. There’s no reason to feel sorry. Feeling sorry is not going to change our situation. All I ask is that you enjoy your kids, your family and your friends. Tell that person you love them. Hug and kiss them. Do what makes you happy. Leave that dead-end job, leave the wrong relationship. In the end, just make sure you are happy. Life is so short. Life is precious. Every breath you take is amazing. Be thankful when you wake up every morning. Ethan is happy no matter what his situation. He knows how to live. Wake up and look around you. Make sure you are truly living and not just going through the motions of life.

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