Jennifer Lovy

@jennifer-lovy | contributor
Jennifer Lovy

When My Son With Autism Approached Another Family on the Beach

We were at the beach yesterday, and my son Evan kept vacillating between trying hard to be extraordinarily good and having a hard time controlling his frustration. He chose the extraordinary good when he decided to approach a boy about his age and his entire extended family. “Can you please stop making those siren noises? It really bothers me,” I heard him say from across the sand. Evan proudly ran back to me to announce what he did. Evan also told me the kid hit his inner tube after he asked him to stop making the noises. I knew he wasn’t lying, and I was surprised nobody said anything to this boy about hitting my son’s inner tube. I was also mad when I heard the grandmother say, “What was that all about?” I couldn’t understand what was so confusing about a kid asking another kid to stop making a noise that scared him? I waited until Evan was out of earshot so I could tell her “what that was all about.” They saw me approaching, and I watched grandma and some other family members tense up. I never like to have these conversations in front of Evan, but this family clearly needed an explanation because I think explaining autism can help raise awareness and, hopefully, acceptance. I — a person who despises confrontation — was surprisingly calm as I walked over to the family at the beach. “My son has autism and certain noises really bother him,” I said. I was preparing to add more when they interrupted me. “He has autism, too,” someone said. “He’s mostly nonverbal, and he likes to make that sound.” I looked down at the boy, who was sitting in a beach chair, his face obstructed by a wide-brim sunhat, and I saw a 10-year-old boy I would soon learn was named Connor. His mom and I high-fived each other because I guess that’s what you do when you meet a stranger who understands your unique experiences raising a child who doesn’t fit neatly into a box. Among all moms of kids splashing in the water and digging in the sand, we knew we understood each other more than any other parent at the lake that day. We talked briefly, trading stats on our kids like they were professional baseball players. But instead of discussing batting averages, we talked about things like sensory triggers and being nonverbal. I told her what a big deal it was that Evan didn’t just come over and start yelling at her son for making those noises, and that this was the first time I’ve seen him appropriately advocate for himself. But as we both knew, moms don’t always have much time to chat when their kids are around. Our conversation lasted less than a minute before Evan required my attention. We said a quick goodbye, and Evan and I had a little talk about autism, too. I told him that Connor also has autism and that he makes those noises because it makes him happy or it helps him feel better. I told him that Connor, who is the same age as he, may have hit his inner tube because he doesn’t have words and was probably upset someone told him to stop doing something that was making him happy. I think Evan liked meeting someone new with autism, because when we got home he kept saying things like “autism is awesome” and “I love autism and special needs and disabilities.” I never expected the conversation to go the way it did. I was prepared to unleash the wrath of a momma bear on this family and then get a half-hearted apology. Instead, I met a member of my tribe. We shared a high-five and a quick talk about our sons. Evan may say he loves autism. I love that autism can be everywhere because it makes it easier to find understanding in a world that can be cruel and judgmental. It was nice to meet you yesterday, Connor’s mom. I’m so glad you were there to understand exactly what was going on and what a big deal it was for Evan to be the self-advocate he was. I hope the next time someone approaches you about Connor’s noises, your interaction goes as well as ours did today. Follow this journey on Special Ev.

Jennifer Lovy

When My Son With Autism Approached Another Family on the Beach

We were at the beach yesterday, and my son Evan kept vacillating between trying hard to be extraordinarily good and having a hard time controlling his frustration. He chose the extraordinary good when he decided to approach a boy about his age and his entire extended family. “Can you please stop making those siren noises? It really bothers me,” I heard him say from across the sand. Evan proudly ran back to me to announce what he did. Evan also told me the kid hit his inner tube after he asked him to stop making the noises. I knew he wasn’t lying, and I was surprised nobody said anything to this boy about hitting my son’s inner tube. I was also mad when I heard the grandmother say, “What was that all about?” I couldn’t understand what was so confusing about a kid asking another kid to stop making a noise that scared him? I waited until Evan was out of earshot so I could tell her “what that was all about.” They saw me approaching, and I watched grandma and some other family members tense up. I never like to have these conversations in front of Evan, but this family clearly needed an explanation because I think explaining autism can help raise awareness and, hopefully, acceptance. I — a person who despises confrontation — was surprisingly calm as I walked over to the family at the beach. “My son has autism and certain noises really bother him,” I said. I was preparing to add more when they interrupted me. “He has autism, too,” someone said. “He’s mostly nonverbal, and he likes to make that sound.” I looked down at the boy, who was sitting in a beach chair, his face obstructed by a wide-brim sunhat, and I saw a 10-year-old boy I would soon learn was named Connor. His mom and I high-fived each other because I guess that’s what you do when you meet a stranger who understands your unique experiences raising a child who doesn’t fit neatly into a box. Among all moms of kids splashing in the water and digging in the sand, we knew we understood each other more than any other parent at the lake that day. We talked briefly, trading stats on our kids like they were professional baseball players. But instead of discussing batting averages, we talked about things like sensory triggers and being nonverbal. I told her what a big deal it was that Evan didn’t just come over and start yelling at her son for making those noises, and that this was the first time I’ve seen him appropriately advocate for himself. But as we both knew, moms don’t always have much time to chat when their kids are around. Our conversation lasted less than a minute before Evan required my attention. We said a quick goodbye, and Evan and I had a little talk about autism, too. I told him that Connor also has autism and that he makes those noises because it makes him happy or it helps him feel better. I told him that Connor, who is the same age as he, may have hit his inner tube because he doesn’t have words and was probably upset someone told him to stop doing something that was making him happy. I think Evan liked meeting someone new with autism, because when we got home he kept saying things like “autism is awesome” and “I love autism and special needs and disabilities.” I never expected the conversation to go the way it did. I was prepared to unleash the wrath of a momma bear on this family and then get a half-hearted apology. Instead, I met a member of my tribe. We shared a high-five and a quick talk about our sons. Evan may say he loves autism. I love that autism can be everywhere because it makes it easier to find understanding in a world that can be cruel and judgmental. It was nice to meet you yesterday, Connor’s mom. I’m so glad you were there to understand exactly what was going on and what a big deal it was for Evan to be the self-advocate he was. I hope the next time someone approaches you about Connor’s noises, your interaction goes as well as ours did today. Follow this journey on Special Ev.

Jennifer Lovy

When My Son With Autism Approached Another Family on the Beach

We were at the beach yesterday, and my son Evan kept vacillating between trying hard to be extraordinarily good and having a hard time controlling his frustration. He chose the extraordinary good when he decided to approach a boy about his age and his entire extended family. “Can you please stop making those siren noises? It really bothers me,” I heard him say from across the sand. Evan proudly ran back to me to announce what he did. Evan also told me the kid hit his inner tube after he asked him to stop making the noises. I knew he wasn’t lying, and I was surprised nobody said anything to this boy about hitting my son’s inner tube. I was also mad when I heard the grandmother say, “What was that all about?” I couldn’t understand what was so confusing about a kid asking another kid to stop making a noise that scared him? I waited until Evan was out of earshot so I could tell her “what that was all about.” They saw me approaching, and I watched grandma and some other family members tense up. I never like to have these conversations in front of Evan, but this family clearly needed an explanation because I think explaining autism can help raise awareness and, hopefully, acceptance. I — a person who despises confrontation — was surprisingly calm as I walked over to the family at the beach. “My son has autism and certain noises really bother him,” I said. I was preparing to add more when they interrupted me. “He has autism, too,” someone said. “He’s mostly nonverbal, and he likes to make that sound.” I looked down at the boy, who was sitting in a beach chair, his face obstructed by a wide-brim sunhat, and I saw a 10-year-old boy I would soon learn was named Connor. His mom and I high-fived each other because I guess that’s what you do when you meet a stranger who understands your unique experiences raising a child who doesn’t fit neatly into a box. Among all moms of kids splashing in the water and digging in the sand, we knew we understood each other more than any other parent at the lake that day. We talked briefly, trading stats on our kids like they were professional baseball players. But instead of discussing batting averages, we talked about things like sensory triggers and being nonverbal. I told her what a big deal it was that Evan didn’t just come over and start yelling at her son for making those noises, and that this was the first time I’ve seen him appropriately advocate for himself. But as we both knew, moms don’t always have much time to chat when their kids are around. Our conversation lasted less than a minute before Evan required my attention. We said a quick goodbye, and Evan and I had a little talk about autism, too. I told him that Connor also has autism and that he makes those noises because it makes him happy or it helps him feel better. I told him that Connor, who is the same age as he, may have hit his inner tube because he doesn’t have words and was probably upset someone told him to stop doing something that was making him happy. I think Evan liked meeting someone new with autism, because when we got home he kept saying things like “autism is awesome” and “I love autism and special needs and disabilities.” I never expected the conversation to go the way it did. I was prepared to unleash the wrath of a momma bear on this family and then get a half-hearted apology. Instead, I met a member of my tribe. We shared a high-five and a quick talk about our sons. Evan may say he loves autism. I love that autism can be everywhere because it makes it easier to find understanding in a world that can be cruel and judgmental. It was nice to meet you yesterday, Connor’s mom. I’m so glad you were there to understand exactly what was going on and what a big deal it was for Evan to be the self-advocate he was. I hope the next time someone approaches you about Connor’s noises, your interaction goes as well as ours did today. Follow this journey on Special Ev.

Jennifer Lovy

When Kids In My Son's Class Were More Accepting of His 'Differences' Than the Parents

Recently there was a school event in my son’s general education classroom. I wasn’t planning to go, because I’d have to rush there from a doctor’s appointment. And, to be honest, it’s sometimes hard to go because the difference between my son and his peers is a reminder of Evan’s daily challenges. My plans changed when Evan asked if I could come to his party. I couldn’t say no. Well, actually I did say no (because I wasn’t sure if I could get there on time and I didn’t want him feeling disappointed), but I had every intention of being there. Fortunately, I didn’t have to disappoint him. “My mom is here. I’m so happy,” he shouted to no one in particular as we walked down the hall from his special education classroom to his general education classroom, where he spends approximately 10 hours a week. I was happy, too. But some of that happiness was unexpectedly shoved aside when we entered the classroom and I saw that Evan and two classmates from his special ed class had their own table in the back. This was a marked change from the last time I was there, when Evan and the two girls sat with the rest of the kids. What’s the point of inclusion if kids aren’t included? Evan already sits with the two girls from his other class most of the time. He goes to the general ed classroom so he can interact with his typically developing peers, not observe them from the back of the class. Some of the other parents in the classroom didn’t know how to address my son. For example, while the kids were working on an art project, one of the moms asked me — not Evan — if he needed some stickers. Talk to him. He’s sitting right next to me. While some of the adults were missing the mark, the kids were, as usual, amazing. I have always found the kids at his school to be open-minded and accepting. On the one hand, they don’t treat Evan or the other inclusion kids any differently. They called Evan out when he tried to cut in line. Yet they support him and his classmates when they need a little extra help. During this class party, one of the girls grabbed Evan’s reluctant-to-dance classmate by the hand and danced with her. The smiles on both their faces were priceless. Inclusion is a beautiful thing, and it benefits all kids. As adults, we can learn so much from our kids. Accepting those who are “different” is an area where your children can be your guides, because they are accustomed to being around kids who aren’t just like them. Most likely, there’s at least one student with noticeable physical and/or cognitive differences in your child’s classroom. Take a moment and ask your children if there are kids in their class who need a little extra help. If your children are older, ask if any of their classmates have autism or other disabilities. Encourage your sons and daughters to talk about these students. What makes them unique? What do they like about them? What’s it like having that student as a classmate? I bet you’ll be impressed with their answers. Many typically developing kids are a testament to good parenting. Their moms and dads teach them how to respect others. Even when parents think their kids aren’t listening or watching, they may be taking in a lot more than they can imagine. To these parents, I say: keep up the good work, so your kids continue to grow into altruistic big people. For every positive interaction I’ve seen from my son’s peers, I’ve also had the unfortunate experience of witnessing negativity, judgment and disdain from adults. For example, when Evan goes up to strangers and asks if they have spider webs in their basements, he’s often ignored. Yes, it may seem like a strange question from their perspective, but it’s not a hard one to answer. As parents, we see ourselves as the ones responsible for educating our kids — but the role of teacher can go both ways. Let these amazing children teach us adults how to open our hearts to some amazing and unique people, like Evan. Follow this journey on Special Ev. The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

Jennifer Lovy

Why I Wish I Could Be More Like My Son With Autism

I just made a hotel reservation in Chicago for a family wedding. It’s one of my favorite places. My son Evan isn’t crazy about the Windy City — or any city — because there are too many sirens. During the call, I informed the reservation specialist that my son has autism and requested a room on a higher floor to help minimize street noise. She said she was going to note the request was based on a “child’s medical condition.” She thought she was doing me a favor by not disclosing Evan’s diagnosis. I asked her to please use the word “autism” so the hotel staff would understand the nature of the request. A “medical condition” sounded vague and didn’t make sense in the context of this request. I am all about education and raising awareness so people are more understanding of those who are different, and I am not ashamed of Evan’s autism. I am envious of so many aspects of his personality, many of which I think are shaped by his autism. Sometimes I wish I could be more like my son. I have at least seven reasons I wish I could be more like Evan. 1. He is comfortable in his own skin. When we explained the concept of embarrassment to him, he asked if it hurts when your face turns red. I know embarrassment is a useful emotion. But I’d often be better off without all that worry that comes with embarrassment. Evan is the kind of person who will dance like nobody’s watching. Plus, he wants everyone watching to join him (which is why he can be the life of the party; see number three). 2. He can spell. I’d be lost without spellcheck. Evan is my spellcheck. He has an incredible memory that makes spelling a cinch for him. He could easily be the school’s secret weapon in a spelling bee. Fortunately, I have Evan and a computer with spellcheck. Unfortunately, the computer doesn’t catch every mistake and, as a freelance writer and blogger, there is nothing more embarrassing than a spelling or grammar mistake (except missing a deadline). 3. Evan is a life-of-the-party kind of guy. He knows how to engage people, and he attempts to interact with others more than anyone I know. For example, he has learned that reading a name tag and then addressing a waitress by her name is a great way to encourage conversation and make someone feel important. His peers don’t always know what to make of his friendly banter; adults, for the most part, are amused and awed by Evan and his complimentary ways. If you’re a girl with lots of ringlets, expect him to start a conversation with “I love your curls.” Last summer, on a particularly hot and sunny day, Evan had the majority of our community swimming pool — kids and adults — playing his version of Marco Polo. The game consisted of Evan saying “Marco” and waiting for people to respond appropriately. When they did, they were rewarded with an exuberant “You said it. You won.” Also last summer, we were at a festival and the bathrooms had no sinks or hand sanitizer. I was too embarrassed to ask for the sanitizer from more than a few moms waiting in the food line with me, but Evan enthusiastically accepted the task by marching up and down the line and asking everyone until he found some. 4. People remember him. Like Norm on “Cheers,” wherever we go we’re often greeted by a chorus of “Hi, Evan.” The downside of this is it sometimes makes his siblings feel invisible, but on the whole people tend to be drawn toward those who are perceived as fun and outgoing, and Evan can be both with a splash of childhood charm and quirkiness. Last year he participated with more than 100 other kids in a one-week program that teaches individuals with special needs how to ride a bike. When the director returned this year, the one kid she remembered was Evan because of his outgoing personality. 5. He isn’t afraid of any amusement park ride… …except the ones that might be dark. Last time we went to Cedar Point, “the Roller Coaster Capital of the World,” it was the first time Evan was tall enough to ride some of the scarier thrill rides and coasters. I did spike his hair (but just a bit) because he was technically a hair (pun intended) shy of 48 inches. He loved them all. Nothing was too fast, too high or too much of a puke machine for this 9-year-old daredevil. Watching my son ride roller coasters that scare the living daylights out of me is, well, humbling, to say the least. I couldn’t help but wish I had the guts to ride alongside Evan as he was having the “best day ever.” 6. Small things bring him great joy. You can see the excitement and enthusiasm in his face. And if you can’t, he’s the first to tell you how much he loves something in a tone that replicates the exuberance of a lottery winner or Heisman Trophy recipient. How great it must be to experience such pure and spontaneous joy on a daily basis. I find it regularly in the simple things like cuddling my kids or watching them play nicely together. I also experience that level of happiness when I’m enjoying an outdoor activity, attending a baseball game or traveling. But, the difference between me and Evan is that I usually have to consciously think about it, while he just seems to experience it. Jennifer’s son Evan 7. When he wants to learn or master a new skill, Evan finds the determination and focus to work hard at achieving his goal. Whatever activity Evan is interested in, he can work at it for hours. Right now it’s gymnastics. He practices handstands, front walkovers, cartwheels and one-handed cartwheels for hours at a time. I’m jealous he has the ability to work hard at mastering his most sought-after skills. In the past few years I have wanted to learn to play piano, take up violin, write a book and start a blog. One out of four isn’t bad. A version of this post originally appeared on SpecialEv.com. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Jennifer Lovy

Cool Gifts for Kids Who Don't Like to Play With Toys

I know, Christmas is a week away and Hanukkah has come and gone. But maybe you’re a procrastinator, too, and this list will still be useful. Even if it’s too late for the holiday season, there’s got to be a birthday coming up. I am willing to bet that sometime between now and 364 days from now, you will be looking for a gift and then you’ll be happy you read this. The other day my friend Sarah showed me the wish list she created on Amazon. She has a daughter with disabilities who doesn’t really like to play with toys. A lot of kids like hers (and mine) don’t. Our conversation reminded me of when my son was younger and didn’t want anything to do with toys and he couldn’t sit still for a board game. He was really, really, really hard to shop for. There were times when we’d wrap socks or underwear or other things he needed because he got the most joy from just unwrapping things. Although my son now enjoys a growing number of toys, it’s still hard to come up with gift ideas for him because he gets frustrated with things that are hard to play with and he is always losing pieces. When people ask what he wants for his birthday, it’s still a difficult question to answer. You can only tell so many people to get him things that light up. So what do you get a kid who doesn’t play with toys? Here are a number of suggestions. Toys They Can Watch My husband is really into Quadcopters, and the kids love watching him fly them. These remote control flying devices range in size and price and, I have to admit, they are fun to watch fly, especially when they get stuck in a tree (shh, don’t tell my husband I said that). You can get a mini quadcopter for around $25. Disco balls and aquarium lamps are fun to watch and calming, too. Several years ago we gave out disco balls to all the kids who came to my son’s birthday party. It was by far the most popular goodie bag item we’ve ever presented. There was a summer where we had three different Gazillion Bubbles hurricane machines. We used the bubble-blowing machine so much that we had to replace it a few times. The self-blowing bubble maker generates more bubbles than anything we’ve ever seen. The only downside was the number of times we had to buy a new one. Cause and Effect Kids, particularly with autism, like to see action and reaction. My favorite toy in this category is the Stomp Rocket. There was a time when we had a closet full of them to give as gifts. The kids love stomping the “launch pad” and watching a foam rocket soar into the air. Not only is it fun for them to see how high it gets, it also helps with gross motor skills. The Hoberman Sphere has always been on my personal wish list. It’s a simple circle that contracts and expands by pushing and pulling. When my kids get their hands on one, they can’t seem to get enough of it. Other great cause-and-effect items are the Gyro Wheel (especially ones that light up) and the Toysmith Liquid Motion Bubbler, which you flip over to watch the liquid elements inside float serenely to the bottom. The box even says, “This is not a toy,” so it’s sure to please your non-toy kid. Sensory Gifts There are thousands and thousands of sensory tools that are fun for kids. Two I’d put on my wish list are: The Cozy Canoe is an inflatable canoe that offers deep pressure for those sitting inside it. It’s a great place to read, play or chill. A pack of Stress Balls and Squeeze Toys, because you can never have too many “fidget” toys. Kids love the feel of these squishy rubber items. Items for Active Kids A good occupational therapy (OT) gym can be a kid’s nirvana. Between the ball pit, swings, trampoline and rock wall, there is so much to do at OT. A lot of families I know try to recreate the OT gym at home. Trampolines — from mini-exercise versions to full-size, outdoor trampolines — are especially popular.  Indoor swings  are also great. Just be sure to get the right mounting/hanging gear. All my kids — and their friends — love being able to swing indoors. We have our swing mounted on our basement ceiling, but there are also swings that attach to doorways or that you can attach to a free-standing base. A kiddie pool and a few bags of colorful plastic balls are an easy way to make an  indoor ball pit . We’ve never done it, but they are always popular at friends’ houses. Other Ideas Consider a personalized picture book. On his sixth birthday, my son got one of these. I created this book on Picaboo, one of a number of online sites that allow users to create photo books. My son’s book is 82 pages of family photos and text, documenting milestones such as birthdays, vacations, the first and last days of school and other yearly traditions. Something completely outside the box — two years ago, we had absolutely no idea what to get my son. He was obsessed with elevators. We looked for books about elevators and toys that might somehow resemble an elevator. After my son watched a video made by a teen who built his own for the millionth time, I thought it would be cool if my son could have his own elevator control panel. I scoured the Internet, found a local elevator company and e-mailed them to see if they had any suggestions. Their response: “We actually have a briefcase that you open up and it has a whole panel of buttons that he can push and they light up. It just has to be plugged in. I would be happy to give that to you. We have not used it because we decided not to use that vendor’s panel.” Places they can go — you can’t wrap classes, tickets or memberships, but any of these would be excellent choices. I have a number of friends who recently started therapeutic horseback riding. One friend gave her son a horseback riding lesson for his birthday. He loved it and now goes weekly. Tickets to shows and concerts (especially sensory-friendly ones) are also great choices, as are zoo or aquarium memberships. When a kid has a passion for animals, just a few trips to the zoo can more than pay for the membership. Looking for more shopping ideas? Try these Mighty gift guides: 31 Awesome Gifts for Kids With Sensory Issues 16 Interactive Toys for Nonverbal Kids

Jennifer Lovy

To the Special Needs Parent Having a Pity Party

Dear parents of a child with special needs, I probably don’t know you, but I know that look you sometimes get. Maybe you’re feeling sorry for yourself, but you’re also feeling guilty about it. It can be common among us special needs parents, so don’t be too hard on yourself. I just experienced that guilty sadness when my 10-year-old son had an epic meltdown within minutes of walking into a birthday party. He hadn’t even taken off his coat before demanding that the host turn on more lights and then crumbling to the ground, screaming, swearing and crying when she said no. It’s ironic. We special needs parents lament about how our kids never get invited to birthday parties, and then when we finally get an invitation, we might wonder why we’ve accepted it. It’s been a particularly difficult couple of days for me, and I’m feeling uncharacteristically bad for myself. It’s time for a pity party. You should know I almost always consider myself a glass-half-full kind of person. But this week my son keeps drinking from my glass, and now it’s empty. He takes his first sip at the birthday party, and as the week progresses he keeps drinking. He calls his brother a bunch of swear words. There’s a drink right there. He smacks his sister on the back. That’s a gulp. He refuses to come in from outside because he’s having too much fun. That’s a sip. Finally he empties the contents of my glass by darting out into the street to retrieve a ball. He is about to return home when I turn around from the mailbox just in time to shout “Don’t move!” The oncoming car stops and lets him cross. The scenario that plays in my head is much different. In this version, he is in the middle of the street and the car doesn’t stop. A parent should not have to worry about a 10-year-old running into the street. So what do I do? I hug my son because I’m so relieved he is safe, and then I plan to throw myself a pity party. You’re welcome to join me. And not because misery loves company, but because sadness sometimes needs company. (Didn’t we learn that from the movie “Inside Out”?) So now that you’re here, welcome. Did you bring any wine? How about brownies? Not too many, I hope, because this party won’t last long. It can’t. Unfortunately I don’t have any brownies to offer, and I can’t justify opening a bottle of wine at 9 a.m. I love a good pity party, but on one condition: It has to be short, and my kids aren’t invited. I guess that’s two conditions. Feeling sorry for yourself sometimes is perfectly acceptable (and therapeutic) because every person deserves the chance to grieve. We need to accept and acknowledge our feelings even if they aren’t pleasant. We shouldn’t expect to be happy or positive all the time. That’s why I like to have a good but short pity party. At times I like to party solo by letting myself think all the bad thoughts, and sometimes that’s enough. There are other occasions where talking a walk is just what I need to work through all the feelings that shout in my head. It’s OK to eat an entire bag of M&Ms or my favorite, Jelly Bellys. Sometimes I call another autism mom to unload. She doesn’t have to say anything. Just listening is enough. I know she gets it. On the day when I realized my cup was emptied, I told my son I was feeling sad. Right before he got on the bus I asked him what he does when he feels down. “I cry,” he says. I ask: “Does that help?” “Yep.” He’s right. I feel better. The party’s over. It was a short one. It almost always is. Like I said, bad or stressful things happen all the time, and it’s OK to grieve occasionally. Have a pity party in a way that works for you, but don’t stay too long because good things happen, too. Don’t our children give us so much more to celebrate? Common behaviors for other kids can be huge milestones for ours. And you don’t want to miss those joyful moments by spending too much time at your pity party – even if there are brownies and wine. Follow this journey on SpecialEv.com. Lead photo source: Thinkstock Images

Jennifer Lovy

The Unexpected Place My Son With Autism Likes to Celebrate Birthdays

When my son, Evan, turned 6, he had a birthday party. We sang “Happy Birthday.” The kids were indulged with overly stimulating activities. They ingested way too much sugar and left with goodie bags overflowing with junk from the dollar store, including more sugary treats. In many ways, it was a typical kid’s birthday party. However, this kid had very specific, atypical rules for his party: Rule #1: No candles. Rule #2: No cheering after singing “Happy Birthday.” Rule #3: No turning off the lights to sing “Happy Birthday.” Rule #4: Read and follow rules #1-3 or I will have a party-ending meltdown. Because Evan has autism, certain things like candles, cheering and turning off the lights can really bother him, so we adapt the best we can. When Evan was younger, birthdays were always hard for us because we were looking for milestones that didn’t come at the marking of each passing year. At the age of 1, he had just learned to crawl. At 2, we were still waiting for his first word. By age 3, we were wondering if our sweet child would ever tell us he loved us. His earlier birthdays were also hard because we didn’t know what presents to get, who we should invite to parties or what special birthday outing we should have. Evan didn’t speak many words, so he couldn’t tell us what he wanted for his birthday. He had little interest in playing with toys or other kids, so he didn’t have any real friends, and we didn’t know what toys would rise to the level of birthday gift. In our house, it’s a tradition that the birthday boy or girl gets to go out to dinner alone with Mom and Dad on the night of his or her real birthday. Unfortunately, restaurants were not Evan’s favorite place to be, so going to one would be torture, not a treat. Plus, Evan has so many food allergies that when we go out to eat, we always bring his food with us. When he turned 5, we took him to our favorite sushi restaurant because it had ceiling fans. He appreciated it, but it didn’t rise to the level of birthday-dinner worthy. When his 6th birthday rolled around, he was going through a phase where restaurants were too loud, too dark or had too much fire (it’s amazing how many restaurants have candles, pizza ovens or openly visible grills). The pressure was on to come up with something special for this birthday boy. What did Evan love that we could do on a weeknight after my husband, Jon, came home from work? For the last four years, Jon, Evan and I have celebrated Evan’s birthdays in the lighting and fan aisles of our local Home Depot. The first time we went, Evan was 6. He sat with his hands on the steering wheel of a car-shaped shopping cart, wearing his birthday crown from school. We walked up and down the light and fan aisle for 45 minutes while Evan ate his dinner out of a Transformers lunch box and talked nonstop about the chandeliers, the fancy-schmancy chandeliers, floor lamps, table lamps, hanging lights, ceiling fans with three blades, ceiling fans with four blades and sconces (those are lights that are mounted on the wall in case you didn’t know because I sure didn’t until Evan taught me). While Evan looked up at the lights and fans, I kept glancing up uncomfortably at the cameras and wondering when security was going to ask us to buy something or leave. They never did. And the other customers weren’t in the aisle long enough to realize we weren’t there to shop. I don’t think anyone knew that we were at Home Depot celebrating our son’s birthday and he was having the best one ever. Follow this journey on SpecialEv.com.

Jennifer Lovy

7 Autism Myths We Encountered After Our Son’s Diagnosis

We were warned, and we pretty much listened. When my son Evan got his diagnosis in 2007, we didn’t Google “autism.” Our most relied-on sources of information included doctors, books and other parents. When friends said they had an uncle’s brother’s cousin’s neighbor’s son who had autism and we could talk to them, we did. Eight years ago it seemed a little harder to find someone on the spectrum. Now it seems like everyone knows at least one person with autism. In the months following Evan’s diagnosis we read a lot of books (and yes, we did end up looking online, too). We asked a lot of questions, and we got a lot of great information and advice. But, as we look back at some of the things we were told or read, we shake our heads in disbelief about the stereotypes and misinformation that came from trusted sources so many years ago. Here are some of my favorite fallacies. 1. The “window of opportunity” closes at the age of 5. There is no magic window of time to help a child overcome some of the challenges that accompany autism. For us, early intervention was crucial and probably most beneficial, but there’s no time limit on intervention or progress. We panicked at Evan’s 5th birthday because his ability to verbally communicate was minimal. His meltdowns were increasing, not decreasing, and we couldn’t get him to stop demanding that each and every light be turned on no matter how bright it already was. He was almost 5, and we desperately needed more time to reach our son, to help him feel comfortable in his own skin. Then something unexpected happened. Evan turned 6 and continued to progress in his development and desire to interact with others. Even now he acquires or masters skills and makes progress in ways we never imagined. For example, instead of just making requests when he talks, today he’s able to verbalize thoughts and feelings and often asks and answers meaningful questions. Not so long ago, some friends whose kids are in their 20s shared the recent milestones and first-time accomplishments of their sons and daughters. Did I mention these kids are in their 20s? The window never closes. 2. People with autism lack empathy/don’t have feelings. Wrong again. Autism doesn’t make someone incapable of emotions. It just makes it hard to communicate feelings or recognize the emotions of others. Evan saw and mostly enjoyed the Disney movie “Inside Out” (although he found parts of it boring – not enough destruction). The film is set in the mind of an 11-year-old girl where her emotions — joy, sadness, fear, anger and disgust – try to help her adjust during a family move from the Midwest to San Francisco. One of the takeaway messages from the movie is that sadness is not only OK but necessary. This message was not lost on Evan, who cried during the ending. 3. Individuals with autism are not capable of showing love. This myth seemed to hold true during the first four years of Evan’s life. Then, we did not get a sense that he felt attached to us in any way. I used to wonder if he’d even notice if suddenly we were not around. Those years, parenting him reminded me of a child with a pet goldfish. The child loves his fish. He plays with and takes care of it by providing basic needs, like food and clean water, but the fish never appears to notice the child. While it seems harsh to compare my son to a pet goldfish, in all honesty it’s the most accurate description I can think of (as painful as it is to admit). Fortunately, as Evan got older, he started to show us his love. He did this by playing with my hair, smiling at his siblings and burying his head in his dad’s arms. More recently, he began responding to an “I love you” with “I love you, too,” but it was something we taught him to say. We were glad to hear those three words from a child we once thought might never talk. But we still wondered if he was truly capable of reciprocating our love. Now he totally understands. He knows how it feels to be loved, and he knows how to love. He says “I love you” spontaneously (and appropriately). Sometimes, like any kid, he says it because he wants something, but mostly it’s because he loves us. Recently he crawled into bed with my husband Jon and me, and the three of us snuggled. “This is what love feels like,” Evan said. Yes, Evan gets it because that is exactly what love feels like. 4. He will likely be really, really good at something – like Rain Man. We were so hoping to discover that Evan had an autism superpower but so far nada, zilch, nothing. Once he heard the music from the ice cream truck and immediately played it on the piano. We thought we’d discovered a savant skill, but right now he’s a one-hit wonder. We’re fine with that. It just would have been cool to have a prodigy living under our roof. Someone’s gotta pay for the all the occupational therapy, physical therapy and social skills groups. 5. A child with autism likely will lead to his parents divorcing. “Eighty percent” – that was the statistic that kept getting thrown around as the divorce rate among families with autism. Those statistics never made sense to me because the vast majority of couples I know with children on the spectrum are still together. I once had an opportunity to spend a weekend at a retreat with 29 other moms of children with special needs, and only two of the moms were divorced. It turns out, a  2010 study  officially debunked this myth. 6. People with autism do not lie. I’m pretty sure this fib was started by someone with autism. When Evan was younger, it was true – we never, ever caught him in a lie. For some reason, that changed a few years ago. Fortunately for us, like most young kids, he’s really bad at it. Just the other day he called his brother a “fat, stupid pig.” The entire family heard it. When confronted with a stern motherly, “What did you say?” Evan’s first response was: “Nothing.” I asked him again. “I said, ‘love you.’” These interactions remind me of the main character in the book “David Gets in Trouble,” by David Shannon. Even when all the evidence points to young David as the culprit of mischief, he always has an answer. “It was an accident!” “I didn’t mean to.” “No! It’s not my fault.” 7. People with autism don’t want friends and like being alone. Yes, early on this appeared to be true. But it’s hardly the case now. Evan really likes having friends and enjoys the company of others. The problem is that he lacks the ability to spontaneously develop effective social interaction skills. Mostly, we have to teach him these skills. As an example, he does not always know how to get people’s attention, so he will make silly noises in an attempt to engage others. We tried to teach him to look at someone and smile. He followed our advice exactly as we told him. He caught the attention of a teenage boy in a crowded elevator by smiling at him. What we failed to teach him was what to do next. He held his gaze and smile for a good 10 seconds or more. The teen shifted uncomfortably and Evan shouted, “Look, I got his attention!” His playdates – which he asks for frequently – may look a little different because he’s often satisfied with the mere presence of a friend and does not need the interactions seen among his typically developing peers. While he still often chooses to play alone, he very much craves social interactions – but often on his terms. Socialization is one of Evan’s biggest challenges, but he tries. Often it’s by asking people if they have spider webs in their basement or what kind of lights they have in their house. But that’s why there are social skills groups and activities we do at home to teach him the “rules” of socialization that the rest of us inherently know. But, a lack of social skills does not mean a lack of interest in socializing. This post originally appeared on Special Ev. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. If you’d like to participate, please send a blog post to community@themighty.com. 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.

Jennifer Lovy

How My Son With Autism Can Help Educate Other Children

“I’m so glad you know how to behave in public,” you whisper to your child. Only it’s not always a whisper. We hear you loud and clear. And even if we don’t hear your words, your disapproving glances convey the message. Evan, my 9-year-old son, has autism. Until he has a meltdown, he doesn’t look any different than his typical developing peers. But then, he looks more like an out-of-control toddler than a third-grade school boy. It’s the worst when parents use Evan’s meltdown as an opportunity to show their child how not to behave, or to reinforce their child’s exemplary behavior. While your intentions may be good, there’s a better, non-judgmental way to teach. Instead of comparing behavior, ask your children why they think the other child is acting that way. Then, be open-minded. Maybe the child who’s having a tantrum just got hurt, he’s scared because he thought he lost his mom or any number of alternative explanations. While this may not be the reason for the child’s meltdown, at least you’re teaching your own children they shouldn’t be so quick to judge. Things are not always as they seem. My son usually isn’t upset because I won’t let him have a cookie or because it’s time to leave the playground. It’s more likely he’s bothered by a sight, sound or smell that you or I barely notice. But to him, it’s an all-out assault on his nervous system. Almost anything can set off a child with autism, from the sound of a fly buzzing to the smell of a banana. Some kids are bothered by the slightest change in routine. I know a girl who insists on always using a particular door to enter her school. If that door happens to be locked, she screams, cries and refuses to go through another door. Without knowing the whole story, a passerby can come to any number of incorrect conclusions. If your child asks a question, answer it to the best of your ability. Your kids are curious and that’s a good thing. They aren’t judging. They don’t mean any harm. They are questioning something new. By avoiding their questions you’re actually showing them something is wrong. Instead, use this as an opportunity to educate your children. Often, a simple explanation will suffice. And if can’t answer your children’s questions, it’s OK. We don’t expect you to have all the answers. Even better, start a dialogue. You could say something like, “Hi, my name is Jen and this is my daughter Jessica. She just asked me about your son’s flapping.” By doing so, you are not asking a direct question, but instead starting a conversation and allowing the parent to respond in a way that is most comfortable for them. If you don’t want to approach them, you could say, “He was born that way, just like James was born with autism or Nathan was born with allergies.” Then you could add something your children can relate to, like, “I wonder if he likes to play with Legos, too.” This way, when your children meets someone with a disability or someone who looks different, they are less likely to be afraid. So please, next time you see a child with “bad” behavior or physical differences, it’s OK to use him or her as a teaching tool. Just do it the right way. A version of this post originally appeared on Special Ev.