To the Helpers Who Walk My Daughter Down the Hallway

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IMG_3742 I dropped my daughter off a little late to school today. Her aide, Lisa, met us at the main office and Erin immediately enveloped her in one of her signature bear hugs. Lisa hugged her back and told her their class was in the library, knowing that would make Erin smile. It did. As I watched them walk away hand-in-hand down the hallway I paused to take a picture. It was a moment I wanted to keep and carry around with me all day.

Driving home I thought of a story a friend recently shared. When her daughters were younger and they were upset about something bad that had happened in the city where they live or some place they heard of in the news, she would borrow a lesson from Fred Rogers and remind them that though frightening things happen it’s important to “look for the helpers. You will always find people who are helping.”

As a parent of a special needs child, the unexpected and the scary has happened, and I am always on the lookout for the helpers. I cannot get Erin, who has a form of autism, through her days without them. I need someone to walk her down the hallway and to her classroom safely, and when that someone takes the time to hold her hand and make her smile, my gratitude knows no bounds. This leave taking – the act of entrusting your child to the care of another is a rite of passage for all parents, but for those with children who cannot communicate the details of their days, it is a leap of unimaginable faith.

The Mighty recently asked readers to describe in one word what it’s like to be the parent of a special needs child. My word is “appreciative.” You appreciate the smallest things your child says or does – but you also appreciate beyond measure the people who come into your life to help. Over the course of Erin’s 13 years I’ve relied on a wide safety net of family, friends, doctors, specialists, teachers, aides as well as a long trail of anonymous men and women whose smile or passing kindness have softened the edges of our often rough and sometimes scary days.

A few years ago when Erin was 7, I lost her on Manhattan’s Upper West Side. My sister and I were shopping for her newborn and each thought the other had Erin. When we realized this was not the case, my heart stopped as I anticipated the sound of a car crash, had she wandered on to the street outside. As employees blocked the exits and conducted a frantic search, a woman in her mid-sixties suddenly appeared, asking if anyone had lost a little girl. She and three friends who were visiting the city had found Erin hesitating at the top of an escalator in a store next door. Erin, who remains fascinated by the movement of escalators but has trouble timing her step to board, was clutching a bright green t-shirt with a picture of Curious George. A tag from Gap Kids dangled from one of the sleeves. Finding Erin safely encircled by this group of women, I think I said thank you, though I may have said nothing at all.  They seemed to think nothing of it – good timing, glad they could help, happy to move along their way.

It took me weeks to recover.

I still get weak thinking about it – both the feeling of losing her – and the appreciation I felt for these complete strangers – these helpers who found her and took the time to find me.

They are everywhere.

Sometimes we know their names. And sometimes they float in and out of your day, your life so briefly, you barely get a chance to acknowledge them, let alone to stop and take a picture.

In either case their imprint and my gratitude will always be there.

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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To the Kindhearted Baker Who Helped My Son With Autism

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My son, Lucas, has autism, and his sensory issues and unwillingness to change his routines have made him a picky eater. If he likes a certain food, he doesn’t mind eating it every day. As a mom, though, I like for him to discover new things so he can have a balanced diet and also because being able to eat different things makes his life a whole lot easier. So every time he accepts something new, I cheer inside.

He’s often attracted to distinct tastes and odd combinations, so it’s not always easy to figure out what he might like. When he was around 9 years old, he insisted on an unusual breakfast every day. It consisted of brown gravy, which had to be prepared in a special way and be a certain temperature, and a bowl of Coco Pops on the side, served dry, which he washed down with a glass of orange juice. Hot salty gravy, dry, sweet chocolate cereal, and cold, tangy orange juice – a peculiar breakfast but one he liked, and I was happy he’d found something to please his palate.

The rest of us in the family usually have bread for breakfast, and every so often I’d offer Lucas different kinds to try. Suspiciously, he’d smell it at first, sometimes refuse it and at other times take a small bite. Occasionally, he’d swallow it with a look of discomfort on his face or simply spit it out. But then, one Christmas, he tried Swedish Christmas bread, Vörtbröd, which is a spiced bread made with rye and beer and sweetened with raisins. I know it sounds strange, but it actually tastes good. Lucas sniffed at it with a curious look on his face, and then he put it in his mouth, chewed it and swallowed it with a smile. Immediately, he asked for more. Bingo!

Xmas Voertbread

I was happy I could add another item to his menu. Since it was a seasonal bread and in the stores only around Christmas time, I stocked up my freezer. Lucas didn’t change his breakfast routine, but he did gladly add a slice of Vörtbröd to the menu. A few months after Christmas, my supply of Vörtbröd was all gone. I tried to entice him with other breads but to no avail.

When I was shopping for bread one time, I told the young baker how much my son with autism had loved his Christmas bread and that it was the only bread he’d ever eaten. I asked him if I could possibly have the recipe. He lit up and was delighted that my son loved his bread, and then he said:

Lucas “You probably have your hands full already. Why don’t I bake a large batch and keep it here in my freezer? Then you can come by and shop whenever you want.”

I was totally amazed at his helpful offer. What a thoughtful young baker! He went on to tell me that his mother had worked with autistic kids, and he knew what challenges it could pose.

This kindhearted baker baked Christmas bread for Lucas for a whole year, and after that Lucas started eating several other kinds of the baker’s lovely bread.

Once in a while, you meet people with a big heart who go out of their way to help others. This young man touched our lives, and I hope, by this story, he touches yours as well.

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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A Simple Gesture From a Woman in Church Made a Disastrous Situation Manageable

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It was Sunday in our new town, Terre Haute, Indiana. We had just recently moved two hours away from my family who helped me all the time, so my boys could receive applied behavioral analysis (ABA) therapy. Before we moved, I went to church every Sunday. The only problem with taking my boys to church is that I need help. I can’t manage my two sons alone — in our old town my parents helped me every Sunday.

Both my boys have autism. My oldest son, Trenton, is nonverbal, is a wanderer and requires 24/7 care. My youngest son, Andrew, has mild autism. Taking my sons anywhere requires at least two to three adults at all times.

My parents came for a weekend visit right after we moved. We all went to what would be our new church that Sunday. That day, we met a nice woman named Linda. I explained to her that my boys have autism and that I just moved to the area. We had an enjoyable conversation.

A few weeks later, I attempted church by myself. I didn’t have anyone to help me, but I didn’t want to miss mass. I was nervous and scared, but I had faith we could do it.

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We made our entrance into church after Andrew, who hardly ever runs away, got away from me while I was getting Trenton out of the van. He ran across the parking lot, without looking for cars, with an oncoming van not too far away. We walked into the church right on time. Once we took our place in the last pew, Trenton immediately went into sensory overload. He bolted from our seat before I knew what was happening and ran all the way to the front of a long, big church. He stood up on the stage, pacing, making anxious movement with his hands and loud noises with his mouth. I took off running after him, leaving Andrew all by himself. Once I got a hold of Trenton, I just smiled at the whole church and forced Trenton back to our seat.

Linda came to my rescue.

She said she would help me during church. It was a gift to have such a kind lady, who doesn’t even know me, offer her help. I felt instant relief come over me.

About two minutes after Linda sat by me, Trenton couldn’t manage his sensory overload anymore. He started screaming and putting his hands over his ears. Then he took his Play-Doh and threw it all over the church. There was no calming him. I grabbed him, but he started hitting and kicking me. I tried to put him on my lap, but his screams were blood curdling at this point. His feet were kicking the pew in front of us, his arms were swinging from side to side and hitting my face.

He pulled my nice, neat ponytail and accidentally kicked Andrew in the face. Andrew started crying and tried to climb up on my lap while I was still holding out-of-control Trenton. I looked at the kind lady who was trying to help me, and her face told me that she had never seen a sight like she was witnessing at that moment. I told her I needed to leave, and she quickly agreed that was probably a good thing. Once Andrew finished crying from being kicked in the face, he started crying because he didn’t want to leave church. Linda helped us exit. Thank goodness!

Once we got the boys strapped in and I thanked Linda for helping us, I sat in the van and sobbed like a baby. I sat there for a good five minutes and just cried.

Even though my church experience was a disaster, I’m not sure how it all would have played out without Linda’s help. She knows little about autism, but she was there to help me and simply give me moral support when I needed it.

This post originally appeared on Two Bothers, One Journey

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If You Want to Know How to Treat a Child With Autism...

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My nephew, Karson, is just 9 months older than my son, Brandon. When they were both babies, this was a huge age difference. When Brandon was just born, Karson was already crawling around. When Brandon was just a few months old, Karson was walking and saying a few words. Karson was always way ahead of Brandon, but that was to be expected. There’s a a major difference between, say, a 6-month-old and 15-month-old.

When Brandon started showing signs of autism, his delay became more and more evident. Now, Brandon is nearly 3 and a half, and Karson is 4 and a couple months. Karson is a wonderful cousin. He’s a beautiful child, inside and out. He shows an enormous amount of patience with Brandon, who has trouble socially engaging with his peers. Karson tries so hard to play with Brandon, many times only to be ignored. He’s learned to play with Brandon in a way that Brandon likes. He’s done this for more than a year and continues to accommodate Brandon when they play. I wish I could say this is due to my stellar parenting and encouragement from our entire family. While this of course helps, there are certain things that just cannot be taught. There is a level of compassion and acceptance that can only be reached if it’s a part of your core.

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I wish this picture captured the enormous smile Karson had on his face when he looked at me and said, “Look, Brandon has his arm on me!” He was absolutely beaming. Karson fully understands what an significant show of affection it is for Brandon to not only put is arm around Karson, but to keep it there. This is how Brandon says, “I love you, Karson.”

I’ll never forget the day we were at my parent’s lake house on a family vacation last summer. I turned around and saw Brandon sitting on the top back of a chair. I darted over because it should have toppled right over, taking Brandon down with it. It happened so fast that I didn’t have time to ponder why the chair hadn’t fallen. When I got there, Karson was sitting in the chair next to Brandon. He was casually eating his breakfast with one hand and holding Brandon’s chair down with the other hand. The awareness Karson had in that moment, for someone other than himself, still amazes me when I think about it. He was only 3 years old then. He instinctively protected Brandon, yet he didn’t feel the need to tell anyone about it. He didn’t try to get attention for it or complain that he could only eat with one hand or yell at Brandon to get down.  He just helped him.

Karson doesn’t understand the concept of autism, but he knows Brandon is different. He understands Brandon is special, and he embraces this.

If you want to know how to treat a child with autism, look to my nephew. He will show you. At 3 years old, this kid accomplished what many adults fail to do.

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This post originally appeared on Ramblings of a Special Mom.

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To the People Who Stare, Whisper and Judge When My Child 'Misbehaves' in Public

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I know that in a glance, you see a naughty child.

You see a parent who doesn’t care enough to discipline their child.

You think if you were that child’s parent, that child would never behave that way.

What you don’t see is that our children are in pain. They’re lashing out against a world that assaults their senses. They’re sweet, they’re funny and they’re beautiful and bright. They’re each individuals.

And I for one work with every breath and piece of energy in my being to make my boy’s world easier.

You don’t see the constant communication going on from home to school, the endless phone calls, the meetings, the social workers, the educational psychologists, the sensory toys, the books upon books we soak up in the hope of making life easier, in the hope to making people like you understand.

You don’t see that our children are perfect. Yes, they spin, they talk to themselves, they stand out in the playground. But they’re gentle, they’re sensitive and they’re trying to learn social skills and a whole hidden language that neurotypical people are born with.

You see a naughty child; I see a child who was brave enough to leave the sanctuary of home today. A child who feels like his eyes may explode because of how bright the sun us. A child who covers his ears and rocks side to side because there’s too much noise, and he can’t make it stop. A child whose own clothes irritate him as they scratch against his skin.

I don’t know many people who would be brave enough to leave the house when their world is so terrifying, but our children have to do it daily.

Stop judging, start smiling.

Yes, my child is different, but he’s brave and he’s clever, and if he can face this chaotic world every single day, then he can do anything. He can change this world, and I am here to help him.

But first I need to change your opinions. Our children aren’t naughty, they’re not bad; they’re very much loved. They have amazing parents who would change the world in a instant to make their children’s pain go away.

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To the Mom in the Grocery Store Who Smiled at Me When My Son Had a Meltdown

I used to think love — deep, radical, boundless love — was a family thing. Maybe a close friend thing. But I was wrong.

I started to notice it after my baby (“Baby Bee”) was born, before we had the autism diagnosis. We had doctor appointments and specialist consults and hours of crying and screaming and not knowing what was wrong. We suddenly had people at our door with food. People coming to clean the kitchen and take out the trash. People running to the store to pick up prescriptions. People stopping by to offer a listening ear. We hardly knew most of them.

Fast forward a few months and we experienced the daily kindness of receptionists and support workers from private occupational therapy to public Early Intervention offices. Folks who worked hard to get us connected to services, said comforting things and never forgot to ask how we, the parents, were holding up.

Then there was the kind mama from our local Buy-Nothing group who responded to my desperate plea for an infant swing (for my 25-pound toddler) because our old one broke and Baby Bee doesn’t sleep without it. (We’ve tested this theory.) That day, she drove out to my house, with her own kids in tow, to drop off a replacement swing. On my porch. While I was at a doctor appointment with Baby Bee. I wasn’t even home to thank her. I didn’t know her.

Did I mention my town raised money to install a swing at our local park for kids and adults with disabilities? And what the community didn’t raise, the local government covered? I felt the entire community’s support as they created a space my son and others would someday feel comfortable exploring.

I felt that deep love again when I met up for our first playdate with a new friend who just moved to town a few weeks back. “You’re a good mama,” she said as I was silently wondering if I’d done the right thing by bringing my son to someone’s house and awaiting his inevitable meltdown. She meant it.

We live in a small town where love abounds. I’ve come to expect a high level of support from neighbors, organizations, moms, and yes, even the local government. We’re incredibly lucky.

Consequently, we’re nervous to venture beyond our community’s cocoon.

But yesterday, love showed up silently, in a city that’s not my own. We went to one of those big box stores to stock up on groceries (and thus reduce our need to venture out again anytime soon). The decision to bring Baby Bee grocery shopping is usually more out of necessity than true choice. We got out of the car.

“Cart. Cart. Cart.”

I knew we were in for it. We approached the red shopping carts stacked up against the building. It was busy. People rushing. Cars pulling in and out. “Cart! Cart! Cart!” His chanting increased to a frantic level.

Deep breaths. “All right, Baby Bee, we’re going to put you in the cart so Mama can get groceries.” I held my breath waiting for what I knew was coming next. The screaming started; I was grateful we were outside. I wheeled us over to a less busy area, partly for him and mostly for me. Something happens when your child gets a diagnosis or acts differently than other kids. You start to pay more attention to what people say and do. You start to listen every time some stranger — who is still developing their own skill set of appropriate social commentary — demonstrates they have room to grow.

And it’s always at the grocery store because it’s just about the only public place you bring your kid anyhow.

I whispered our next steps, hoping it would soothe him. “Now, I’ll buckle you up so you stay safe in the cart. Here’s the buckle. Click. Click”

“Cart. Cart. Cart. Ouch! Ouch! Ouch! Cart. Cart. Cart. LOUD! LOUD! LOUD!”

He was yelling now. “It is loud, isn’t it, Baby Bee? I hear lots of people and cars and carts. Listen? Do you hear that? Woosh, woosh.” I did my best imitation of the electric doors we had to enter sooner or later. “That’s the sound of the doors opening and shutting. In a moment we are going to go through those doors and walk up and down the aisles to get the food we need.”

“LOUD! LOUD! LOUD!” and then suddenly, “Bike. Big. Bike. Bike. Bike. Bike.” I knew what he was thinking. Our local grocery store has full-sized bikes around the perimeter as decoration. I guess it’s a small town thing.

“The bikes aren’t at this store, Baby Bee.”

“BIKE! BIG BIKE! BIKE!” He was fixated. He’d spend the rest of our trip intermixing “Bike!” and “Loud!” and “Cart!” If that was all that happened, we’d consider it a success.

young boy sitting in grocery story shopping cart

But then someone bumped the cart. He was crying now, the full-on meltdown crying that seems to have no end when you’re in the middle of it. Occasional bursts of “Loud!” and “Ouch!” came through with a fair number of “No! No! No!” thrown in for  good measure.

People were staring and avoiding in turn. Shaking their heads. As a parent, you wonder if people will blame your parenting. Your genetics. Your decision to reproduce.

Or the fact that you went back to work at two months postpartum instead of three.

I digress.

When I looked up, I saw her. A mom with a preschooler stood to the side, watching. I whispered into Baby Bee’s ear to drown out the sensory chaos. The mom leaned in to hear what I was saying. She watched the way I pressed the sides of my hands on either side of his body to provide some deep pressure and used my body as a shield from the visual stimulation around us. Her daughter stood, watching us too.

Several minutes later, Baby Bee had calmed and picked up his “bike, bike, bike” chant again, which I took as a positive sign. I gathered my courage and faced the ever-wooshing doors.

She was still there. Not staring. Not rudely prying into our difficult situation. But standing respectfully off to the side seemingly observing, educating herself and maybe rehearsing the conversation she’d have with her daughter about how everyone has different challenges in life. Her look was compassionate and encouraging.

And then she caught my eye and smiled at me with a smile that conveyed it all:

“There’s more of us out here, you know. We’re here if you need us. If you’ve got too much going on, we’ll bring you dinner and clean your kitchen. And I noticed that your kiddo has a lot going on, are you doing OK yourself? We’ll drop the infant swing or whatever else on your porch, if you can’t pick it up. I don’t mind at all. Oh, and please, don’t worry, we already made a donation for accessible play structures at our park — your child is welcome any time he likes. Remember, you’ve got allies all over the place, not just at home.

And you know what else?”

 She nodded toward my little guy, chanting away, and smiled again.

“You’re a good mama.

A really good one.

I mean it.”

“Thanks, Mama,” I silently smiled back. “So are you.”

Follow this journey on Couch to Five Acres.

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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