M. Betz

@mbetz75gmailco
Vicki Swan

The Coke Can Effect That Explains Autism Meltdowns

Tonight I helped a local group with some autism awareness training, I think it went well. I used the coke can explanation to describe a day at school for Sam. Sam is fictional, he is a 10-year-old little boy, he has red curly hair and a cheeky smile. He is a combination of my own school experiences and those of my children. The coke can analogy was first described to me by another parent of a child on the autism spectrum a few years ago; it has always stuck with me as the perfect way to explain the way a child bottles up everything and then let’s it all go once getting out of school. I have seen other people write about it, this is my interpretation as an autistic adult myself and a parent of kids on the autism spectrum: The coke can example. “Come on Sam, time to get up.” The light streaming in the curtains burns Sams eyes, blinding him. Sam gets up. Immediately the pressures of every day life are upon him: get washed and dressed, brush teeth, go downstairs, join the rest of the family. “Morning Sam.” Clothes are scratchy and uncomfortable, they are not comfy clothes Sam would choose. They seem to dig in, or don’t sit right, labels rub and feel different to the rest of clothing, they become an annoying distraction for Sam. Sam tries to eat breakfast but all he can think of is those seams and labels. Now shake the can! Sam now needs to find and put on his shoes and coat. Shoes are heavy, they squeeze and pinch, feeling tight over Sam’s feet.Coats are restrictive, bulky and annoying! Now Sam needs to leave the house. Shake the can! Sam gets in the car. The car is cold, the seats are hard, the car has a funny smell. The seatbelt digs in and restricts movement, it feels suffocating. Sam arrives at school, he gets out the car, there are other cars, children and their parents everywhere. Shake, shake, shake the can some more! So much to see, where should Sam look? So much noise, did someone say Sam? Where is that noise coming from? Sam trips and falls on the steps. Sam gets up, he feels like running away! Shake the can some more! The noise is the ringing bell, Sam covers his ears and drops to the ground slamming his head off the ground! I help Sam up, I hug Sam “It’s OK, you are OK” Sam is now late for school. Shake the can! Sam enters his classroom last, 25 noisy children each with their own unique faces, sounds and smells. Sam’s senses are totally overwhelmed, he covers his ears, shuts his eyes and slams his head off the nearest desk. A voice is shouting, “Sam, Sam, sit down Sam. Come on now everyone, into your seats. Sam sit down.” All Sam hears is his name. He focuses hard but misses the instructions, he sees the other children sitting down and copies. Shake the can harder! Chairs are dragging on the floor, like fingernails down a blackboard, the lights are too bright, the classroom is covered in posters and art work made by children, pencils on paper make a noise only Sam can hear, it is a busy environment full of distractions. All Sam’s senses are overwhelmed. Sam’s eyes and head hurt. Sam wants to run away. Sam again hits his head off the desk. Shake the can again! Sam tries to do his work. Sam doesn’t understand what he is meant to be doing, he couldn’t process all the instructions quickly enough. Sam can’t ask for help, he can’t communicate his difficulties although Sam is verbal, it is to overwhelming to speak in class. Sam rolls his pencil along the table, mesmerized by the way the light dances along it’s straight edges. Watching the light dance is soothing for Sam, he gets up and walks around, walking is soothing, too. Sam gets told off for distracting the other children, he is told to return to his seat. Shake, shake, shake! Break time! Sam is alone, the other children won’t include him. Over 100 children in the playground but Sam feels so lonely, he longs for company. Again Sam is hit with sensory overload caused by the noisy playground environment, Sam covers his ears, falls to the ground and hammers his head off the ground. “Go play Sam” “Play? How do I play? What with? There are no toys” are the thoughts racing through Sam’s mind. Sam doesn’t know how to play, he struggles with imagination. Play with who? Sam has no friends. Sam runs up and down, knocking into other children, “ Go away Sam!” “You are in the way Sam.” The smell and noise in the dining room at lunchtime causes Sam to retch, he then falls to the ground, hands on ears, eyes screwed tightly shut, slamming his head off the floor, his senses overwhelmed again. Sam barely eats any lunch. Shake, shake, shake harder. “Do your worksheet Sam!” Gym time. Sam is last to change, it is hard for Sam to change clothes, he is all fingers and thumbs, his PE clothes feel different, different materials. More labels. Light shoes that feel wrong. At PE, no one wants Sam on their team, Sam can’t hit the ball with the bat, he gets struck out, he sits alone at the side punching his chin. Sam changes back into his school clothes, again everything feels wrong. Shake harder, shake harder! “Come on Sam, everyone else has finished that worksheet!” Sam flaps his arms and stamps his feet. Sam is struggling to “hide” his autism. Sam wants to run away, he feels sweaty, his heart is thundering in his chest, the classroom is too hot, too loud, too bright, just all too much! Sam sits repeatedly banging his head off his desk. Sam doesn’t understand. Sam needs to move, to fidget. Sam chews his fingers, the bones in his fingers are deformed from repetitive chewing. Shake, shake, shake! Assembly, “Sit down Sam!” Sam just can’t sit still, Sam just can’t keep quiet. Too many people, everywhere, it is all too much! Smash, Smash, smash! Sam is smashing his head off the tiled floor. Sam starts making noises, squealing, howling, feet stamping, arms flapping. Children whisper. Teachers talking. It is all too much, more head smashing. Sam is crying. “Sam back to the classroom.” Sam stands up, he doesn’t understand why he has to leave and is guided back to the classroom. Everyone is staring, pointing, whispering, “weirdo, freak, cry baby.” Sam understands every single insult, the tears fall faster. Keep shaking that can! “Sam get your coat and bag.” Sam can’t find his coat, and what else was he to find…. Sam gets knocked into, pushed out of the way. Sam returns with his coat, “Sam where is your bag?” Sam goes back into the cloakroom, more pushing and shoving to find his bag. Sam’s bag is not on its peg, someone has moved it. Sam is panicking, finally he finds his bag hidden out of sight over by the door. Shake, shake shake! Home time! Sam negotiates his way along a packed corridor full of a sea of moving children. He fights his way through the door outside into the playground to be met by the faces of hundreds of parents waiting to collect their children. Sam spots me. “How was your day, Sam?” Would you like to open that can now? The coke can effect describes the child who bottled everything up for as long as they could. This was my own experience of school and the experience of two of my children. Sometimes, I didn’t last until the end of the day. I had a reputation for throwing classroom furniture out of the way while I made my escape. One of my children who doesn’t know of my behavior in school reacts in exactly the same way! It is a fight or flight reaction — I just had to get out and anything in my path would be met with destruction! For a child like Sam, you need to find a way to release the fizz slowly. At school pick up, I minimize communication with the children, welcoming them with a smile, a hug and a high five. Remember how hard Sam’s day was? My child like Sam bounces on a trampoline for up to an hour most days. My other child goes for a run. They have to get it out their system, just like I did. These days, I use loud music and long walks when the need to let off steam arises. If the coke can explodes before you can gently release the pressure, you have to let the tears run their course. It may be a few minutes, it may take hours. The priority is keeping this child safe until the storm passes. Talking won’t work, they can’t hear you during a meltdown. Touching can be risky and lead to more lashing out. All you can do is wait it out, be patient, be understanding. Once the child is calming down, use gentle reassurance, short sentences. Never punish a meltdown. The child has no control. Now move on, be positive and kind. The last thing any child wants is for you to drag up all the triggers and trauma that added up over the day. School is done for the day, leave it there. Sam and others like him will have to summon up the strength to do it all again tomorrow.

M. Betz

What I Do to Protect My Son's Emotional Health During ABA Therapy

My son, Julian, was diagnosed with autism nine months ago. The diagnosis didn’t come as a surprise… my sweet Julian is completely nonverbal. I have to admit, hearing his diagnosis for the first time stung a little. But I took it in stride, knowing it didn’t change how awesome he is. It only added to the services I could get him. Toward the end of the appointment, I asked the doctor, “Where do we go from here?” He gave me a list of ABA therapy providers. Julian would need to start as soon as possible. I immediately felt a sense of panic. I didn’t show it, but my “mom shield” went into full effect. You know that feeling… the urge to protect your child from anything harmful. I’ve heard stories about ABA therapy… children being forced to do things they find uncomfortable or scary, with the goal of desensitizing them. I’ve watched videos of children strapped into chairs so they couldn’t wander… and their therapists ignoring their cries. Of course, I want Julian to make developmental gains and reach his full potential. And I’d love to hear him speak. But I know those things won’t happen if he doesn’t feel safe. My family has worked very hard to make sure he feels supported and loved in a world that is often scary to him. I won’t sacrifice his emotional health in order to reach those goals. Fast forward — Julian has been receiving ABA therapy for eight months now. ABA is nothing like I imagined. In fact, it’s better than every other therapy he’s had before. I not only interact with his therapist, I work with a whole team of professionals who are interested in Julian’s well-being. They even helped me get ABA services for Julian’s twin brother, who isn’t yet diagnosed. The therapy isn’t cold or forced. It’s playful and developmentally appropriate for their age and ability levels. We work on skills and tasks specific to our family, such as taking baths and going on outings. While Julian works on sounds and sorting, his brother, Dominic, works on letters and vocabulary. And both of them work on life skills, impulse control and safety while out in public. I’m even able to plan trips I wouldn’t normally be able to handle by myself. We’ve been to the store, the beach and even the aquarium. My boys have had life experiences that I couldn’t have provided on my own. The process of finding the right ABA provider wasn’t easy. It took a great deal of energy on my part. But I knew Julian’s emotional health was worth it. Here are some actions I took, and continue to take, in order to advocate for the best ABA therapy: 1. I did my research. Before choosing a provider, I asked around. I contacted the Autism Society of America (ASA). They know the ins-and-outs of autism services in my area. (You can find your local chapter here.) I also asked other parents on my local Autism Facebook group. Their first-hand experiences helped me narrow my list. Before I made my decision, I interviewed the provider to get a good sense of the company’s policies and methods. Do they welcome my questions and concerns? Are they easy to talk to? How hard would it be for me to voice a complaint? 2. I got organized. I am in charge of my child’s therapy. I made a list of goals and concerns — for my twins and for our family. In addition to individual communication and cognitive goals, I wanted to work on safety in public spaces. My family spends a lot of time at the beach in the summer. So I added that to the list. It was also important that the sessions were developmentally appropriate, and protective of their emotional health. Their therapy should be play-based with lots of movement and singing — not rigid and ultra-structured. Those concerns were added to the list as well. 3. I communicate often. Not every session is perfect. Neither is every therapist. When something doesn’t feel right, I let them know. There may be a method to to their ways I don’t understand. Or I may be able to offer the therapist some tips to help the sessions run more smoothly. Dominic and Julian’s therapy is done at home with me. But I also keep in contact with the therapists and their supervisors at least once a week to address their progress, as well as any concerns I may have. It’s not easy trusting someone else with the emotional health of my children. It’s even harder when they can’t express themselves in a way I can yet understand. But the majority of therapists feel the same way we do: they want our children to succeed. They want to help support our children’s, as well as our family’s goals. I’ve been extremely lucky to find amazing therapists. What are your experiences? What advice can you give to a parent who’s new to autism? Follow this Journey at Not an Autism Mom We want to hear your story. Become a Mighty contributor here .

M. Betz

A Different Way to Communicate With My Nonverbal Son With Autism

When Julian turned 4 years old, I remember thinking, “ What if he never talks?” Up until that time, I had never even considered him not talking, and the thought hit me like a ton of bricks. But the reality was, we just didn’t know. We didn’t know if he would talk next week, or if he would be nonverbal. We just knew that our family, and everyone else supporting Julian, needed to start meeting him at his level. And we needed to do a much better job doing that. So our family decided to try something different. We’ve been using an augmentative and alternative communication (AAC) device for the past five months, and it has completely changed our world. Julian was diagnosed with an expressive/receptive language delay when he was 1 year old. For Julian, that’s a fancy way of saying he doesn’t talk, and he doesn’t seem to understand what we say to him. When he turned 3, he was also diagnosed with autism. Julian has participated in multiple therapies and interventions since he was a baby. And while he has progressed in so many ways, nothing seemed to help his verbal language. By the time Julian turned 4, he still didn’t have any functional words. He was frustrated. He cried a lot. He had a hard time with transitions. He had a hard time at school. He was just having a hard time overall. And why wouldn’t he be having a hard time? He couldn’t communicate. He couldn’t voice his opinions. And he couldn’t understand the majority of what we were saying. I’d be frustrated, too! A few months after his fourth birthday, Julian’s doctor referred him for an AAC assessment at our local children’s hospital. The therapists who performed the tests decided the Proloquo2Go (P2G) app would be the best fit for him. They also informed me that Julian had been training to use P2G and we didn’t even know it. Whenever he used my phone to watch YouTube, or played a game on his tablet, he was essentially preparing himself to navigate through the app! Our Journey so far with P2G We started using the device as soon as we unpacked it. We had a crash-course with the school’s speech and language therapist, and we went to weekly trainings with a speech therapist. On the very first day, Julian learned how to find the food folder. I suddenly didn’t have to guess what he wanted to eat. He didn’t have to scream because I guessed wrong. He simply touched what he wanted to eat, and I gave it to him. It was magical! In under two weeks, Julian could tell us if he wanted more or if he was all done. We easily created a “fun” folder for his therapies, and he could tell us what he wanted to play with. Within one month, we we arguing! Can you imagine how wonderful it feels to argue with your child when he’s never spoken a word? Julian has opinions, and he’s finally able to voice them! He wants to go to the beach. He wants to go see his Nana. And he wants to go to McDonald’s! (Yes, there’s a button for that.) After two months, Julian was teaching us. He taught us that he knows his colors and could identify shapes. And he could connect those concepts with real-life experiences. One night when I was cooking dinner, he brought me a cob of corn and told me it was yellow. Spontaneously, without being asked, he just offered up that information. And then he took a bite for the first time ever. Mind. Blown. We’re currently five months into our journey with P2G. Julian uses it for everything. He’s starting to count and identify numerals. He’s using two-word phrases, such as go outside and want apple. One thing we didn’t really expect, was Julian starting to talk using his own voice. He can say Nana and uh-oh perfectly, and he approximates many more words. I oftentimes hear him humming a tune to himself, which he’s never done before. Receptively, Julian continues to understand more and more words and phrases. He goes to get his shoes when it’s time to go outside. He puts things in the trash. He cleans up when we ask. I’ve even started to spell out words because he can pick up on them now. Five months ago, we didn’t know if Julian would ever be able to speak. But now I realize we weren’t using the correct language. Julian speaks in pictures, and we were using words. Now we finally have a translator with P2G. And it’s helping all of us understand each other better.

M. Betz

Why I Said I'm Sorry When Your Child Was Diagnosed With Autism

A couple of months ago I was talking with an acquaintance. We hadn’t known each other for very long, but we had common interests and enjoyed each other’s company. She knew my son had an autism diagnosis, and she felt comfortable talking with me. She told me her son was just diagnosed as well. Before I could think, I said, “ Oh man. I’m sorry to hear that.” As soon as the words passed my lips, I knew it was the wrong thing to say. She gave me an odd look, and I immediately started to backtrack. This type of blunder is nothing new to me. I’ve never been good at politically correct language. But nevertheless, our conversation has weighed heavily on my mind. What I said is true. I am sorry to hear her son was diagnosed with autism, but not because I believe autism is such a terrible condition to have. I’m raising four children. And all of them have “issues.” Two of them recently became teenagers and may not make it through the week if their attitudes don’t clear up. Autism can be a tough diagnosis to navigate, and I know some of the feelings she might experience in the months to come. So when I said, “I’m sorry,” this is what I really meant: I’m sorry you might start researching your child’s condition only to become more confused than you already are. I’m sorry there might be more questions than answers. I’m sorry you might feel the need to become a geneticist, neurologist, psychologist, gastroenterologist and a lawyer all at once. I’m sorry for the feelings of guilt and inadequacy you might experience. I’m sorry your insurance might not approve the treatment you’re seeking, and you may have to fight tooth-and-nail to get the services your child deserves. I’m sorry you may feel alone sometimes, because you think nobody understands what you’re going through. I’m sorry you may lie in bed at night and wonder what more you could be doing. I’m sorry that rude people may stare at your family when you go out to enjoy yourselves. I’m sorry that autism awareness isn’t the same thing as autism acceptance. I’m sorry that, at some point, you may find yourself trapped in a never-ending debate on vaccines. That’s what I meant when I said, “I’m sorry.” But it still wasn’t the right thing to say. It’s not my job to dump all of that negative energy on a mom who’s just starting her journey through the autism spectrum. It’s my job to smooth her path. Now that I’ve had some time to reflect, I know what I’ll say the next time: Thank you for sharing that with me! How are you feeling about the diagnosis? This will open so many doors for your little one. Let me know if you have any questions. Here’s my number. Feel free to call or text me anytime. Our area has a wonderful support network full of parents ready to help each other. I’d love to introduce you to some of them. We have parent meet-ups and family events all the time. I’ll get you on the mailing list. I’m here for you, anytime you want to talk. Welcome to our tribe.

M. Betz

What I Do to Protect My Son's Emotional Health During ABA Therapy

My son, Julian, was diagnosed with autism nine months ago. The diagnosis didn’t come as a surprise… my sweet Julian is completely nonverbal. I have to admit, hearing his diagnosis for the first time stung a little. But I took it in stride, knowing it didn’t change how awesome he is. It only added to the services I could get him. Toward the end of the appointment, I asked the doctor, “Where do we go from here?” He gave me a list of ABA therapy providers. Julian would need to start as soon as possible. I immediately felt a sense of panic. I didn’t show it, but my “mom shield” went into full effect. You know that feeling… the urge to protect your child from anything harmful. I’ve heard stories about ABA therapy… children being forced to do things they find uncomfortable or scary, with the goal of desensitizing them. I’ve watched videos of children strapped into chairs so they couldn’t wander… and their therapists ignoring their cries. Of course, I want Julian to make developmental gains and reach his full potential. And I’d love to hear him speak. But I know those things won’t happen if he doesn’t feel safe. My family has worked very hard to make sure he feels supported and loved in a world that is often scary to him. I won’t sacrifice his emotional health in order to reach those goals. Fast forward — Julian has been receiving ABA therapy for eight months now. ABA is nothing like I imagined. In fact, it’s better than every other therapy he’s had before. I not only interact with his therapist, I work with a whole team of professionals who are interested in Julian’s well-being. They even helped me get ABA services for Julian’s twin brother, who isn’t yet diagnosed. The therapy isn’t cold or forced. It’s playful and developmentally appropriate for their age and ability levels. We work on skills and tasks specific to our family, such as taking baths and going on outings. While Julian works on sounds and sorting, his brother, Dominic, works on letters and vocabulary. And both of them work on life skills, impulse control and safety while out in public. I’m even able to plan trips I wouldn’t normally be able to handle by myself. We’ve been to the store, the beach and even the aquarium. My boys have had life experiences that I couldn’t have provided on my own. The process of finding the right ABA provider wasn’t easy. It took a great deal of energy on my part. But I knew Julian’s emotional health was worth it. Here are some actions I took, and continue to take, in order to advocate for the best ABA therapy: 1. I did my research. Before choosing a provider, I asked around. I contacted the Autism Society of America (ASA). They know the ins-and-outs of autism services in my area. (You can find your local chapter here.) I also asked other parents on my local Autism Facebook group. Their first-hand experiences helped me narrow my list. Before I made my decision, I interviewed the provider to get a good sense of the company’s policies and methods. Do they welcome my questions and concerns? Are they easy to talk to? How hard would it be for me to voice a complaint? 2. I got organized. I am in charge of my child’s therapy. I made a list of goals and concerns — for my twins and for our family. In addition to individual communication and cognitive goals, I wanted to work on safety in public spaces. My family spends a lot of time at the beach in the summer. So I added that to the list. It was also important that the sessions were developmentally appropriate, and protective of their emotional health. Their therapy should be play-based with lots of movement and singing — not rigid and ultra-structured. Those concerns were added to the list as well. 3. I communicate often. Not every session is perfect. Neither is every therapist. When something doesn’t feel right, I let them know. There may be a method to to their ways I don’t understand. Or I may be able to offer the therapist some tips to help the sessions run more smoothly. Dominic and Julian’s therapy is done at home with me. But I also keep in contact with the therapists and their supervisors at least once a week to address their progress, as well as any concerns I may have. It’s not easy trusting someone else with the emotional health of my children. It’s even harder when they can’t express themselves in a way I can yet understand. But the majority of therapists feel the same way we do: they want our children to succeed. They want to help support our children’s, as well as our family’s goals. I’ve been extremely lucky to find amazing therapists. What are your experiences? What advice can you give to a parent who’s new to autism? Follow this Journey at Not an Autism Mom We want to hear your story. Become a Mighty contributor here .

M. Betz

What I Want Every NICU Mom to Know About RSV

If the boogeyman had a name, his initials would be R.S.V. Every time I hear those letters, my heart beats a little faster and a tingling sensation rushes through my veins. Four years ago, I’d never heard of respiratory syncytial virus (RSV). I only learned about it when my twins, who had just gotten out of the NICU, started showing symptoms. The virus is actually very common. We’ve most likely all had it at one point or another. For most people, RSV presents as a cold with no need for medical attention. But for premature infants and babies with other health issues, RSV can be fatal. You may think that sounds dramatic, but I have first-hand knowledge of how dangerous this virus can be. Dominic, my tiniest twin, graduated from the NICU on Halloween 2013, right before his due date. On January 2nd, 2014, he started breathing fast, so we took him to the hospital. He spent the next four weeks in the PICU battling RSV. During that month, my 6-pound baby stopped breathing, had to be resuscitated, suffered a collapsed lung and needed a blood transfusion. And those are just a few of the traumatic events he endured. On more than a few occasions, the doctors told me, “We just don’t know what’s going to happen.” His brother, Julian, only spent a few nights in the hospital. Thankfully, with the help of the doctors, nurses and prayers sent by so many loved ones, they both made a full recovery. But when Dominic came home, he was much smaller than Julian. And he remains smaller to this day. I recently found out that October is RSV Awaresness Month. That’s fitting, because it’s right before RSV season starts. In an effort to help other NICU parents, I want to share some of the knowledge I gained while my babies were sick. Here is what I want every NICU parent to know: 1. Take it seriously! It seemed like Dominic had just left the NICU when he started getting sick again. I didn’t want to be “that mom” — the one who overreacts to every-little-thing wrong with her baby. So I started second guessing myself. I thought I could handle it myself. But remember this: if your baby is having trouble breathing, that is a medical emergency. RSV is dangerous. Don’t wait to get treatment. 2. Go to a children’s hospital. I know that’s easier said than done. But regular hospitals are not trained, nor are they equipped to deal with premature babies. I took Dominic to my local hospital when he first started showing symptoms. They told me he had pneumonia, gave him a breathing treatment and antibiotics, and sent us home. A couple hours later, Dominic was getting worse, so we hit the road. Our closest children’s hospital was over an hour away. Luckily, my mom was available to ride with me. When we arrived at the ER, Dominic was immediately rushed to the back for testing and treatment. As it turns out, he didn’t have pneumonia. He had RSV — and it was bad. 3. RSV is not asthma . My oldest son has dealt with asthma since he was 2 years old. So when I saw Dominic having a hard time breathing, I immediately gave him a nebulizer treatment in order to help open his airways. The symptoms looked so similar: shallow breathing and retractions (caving in) around his collar bone. I later learned that nebulizers and inhalers aren’t usually effective when treating RSV. If you know someone with a baby in the NICU, or know someone who was recently discharged, please share this with them. NICU parents are busy. They may not know anything about RSV. You could help them make better decisions than I made. Click here for more information on RSV. Follow this Journey at Not an Autism Mom We want to hear your story. Become a Mighty contributor here .

M. Betz

To My Premature Twins on Their 4th Birthday

My twins are turning 4 years old. I’ve always loved birthdays. They are a time of celebration and reflection. A time to honor accomplishments and appreciate life. This birthday is no different…but it feels different. For the first time, as I reflect on Dominic and Julian’s four years of life, swells of emotions are rising in my chest. Tears as sharp as glass are forming in my eyes. I am overwhelmed with such an abundance of feelings, my heart could burst. So I decided to write them a letter. My Sweet Boys, Today is your 4th birthday and I want to let you know how proud I am of you. You have overcome so many obstacles during your short time on this earth. From being 6 weeks premature, to fighting serious infections. From staying months in hospitals, to visiting countless doctors. You’ve endured so much, and still manage to smile, laugh and love each day. I will forever be in awe of your strength and courage. To Dominic, They say the best things come in small packages. You are the tiniest, most wonderful gift I could ever receive. You brighten up the room with your mischievous smile and bold laugh. My heart aches reflecting on how many battles you’ve had to fight; how many times the doctors told me, “We just don’t know if he’s going to make it.” But that heartache quickly turns to feelings of joy and elation because you’re still here. There are so many things I love about you. Your confidence and assertiveness is often surprising. You can have a whole conversation with only five words, but that doesn’t stop you from speaking your mind. And those attributes can only be matched by your compassion to uplift those around you. I love how you cheer on your older brothers at their games. And you always make sure Julian is well taken care of. You are such a gift to our family. To Julian (my youngest baby), You are the sweetest, most precious gift a mother could ask for. Your innocent smile and doe eyes melt my heart every single day. You have taught me so many life lessons during these past four years. You’ve touched my heart in ways I didn’t know were possible. I’ve always had a saying about you: “Julian will not be rushed.” You’ve always done things in your own time. During your first week in the NICU, the doctors were worried because you wouldn’t breathe on your own. But as I’ve gotten to know you, I imagine you were probably just relaxing. You just got here; you weren’t ready to do everything yet. I can understand that. The same was true with crawling, walking, eating and now talking. You’ve never been concerned with predetermined “milestones.” You get to them when you are ready. Why stress? You taught me that life isn’t a race, it’s a journey. And I’m so happy I get to share it with you. Happy birthday, Dominic and Julian. You are my heroes. Love, Mom Follow this Journey at Not an Autism Mom We want to hear your story. Become a Mighty contributor here .

M. Betz

Why I Tell Strangers My Son Is on the Autism Spectrum

My son, Julian, was diagnosed with autism about six months ago. I wasn’t shocked when he received the diagnosis. Julian is completely nonverbal, walks on his toes and doesn’t have the best eye contact. At first, it felt odd telling complete strangers about Julian’s condition. I’ve always known that spreading awareness was important, but it felt different now that it was my baby. I didn’t want to wear a shirt with his diagnosis on it. I didn’t want people to judge him before they even got to know him. But as time has passed, and new situations have arisen, that feeling  has changed. Here’s why: 1. Julian doesn’t “look autistic.” I’ve heard that comment several times during the past few months. I’m guessing it means he doesn’t look like he has a disability. Julian looks like a typically developing 4-year-old. He walks, runs, laughs and plays. We live a couple blocks from the beach and Julian loves crawling in the surf with his twin brother, Dominic. Every so often, another child visiting the beach will approach Julian to play. I don’t get involved. I simply watch to see how it all plays out. Most of the time, he will simply ignore the other child. This makes Julian appear rude and inevitably hurts the child’s feelings. Occasionally, he’ll engage to play. But there’s a couple barriers to overcome: he doesn’t talk and he doesn’t acknowledge what the other kid is saying. This also makes Julian appear rude. I’m not sure if you’re aware, but kids don’t like it when other kids are rude to them. They always run and tell mom. That’s my cue! The standard protocol for a mom in this situation is to tell her kid to play nicely, or something to that effect. That’s obviously not going to work in Julian’s case. Instead, I go straight to the other mom. I let her know he has autism. I’ve found that it eases the tension and promotes a more accepting environment. It even creates a dialogue that wouldn’t have otherwise been started.   2. I used to be “that mom.” Until a couple of years ago, if I saw an older child “being bad” or “having a tantrum,” autism probably wouldn’t have crossed my mind. I honestly would’ve thought the child needed to be disciplined. None of my friends had children with autism. I simply wasn’t as aware or as informed as I am now. So I tell others about Julian’s diagnosis — not for sympathy or attention, I simply want to add a drop of autism into their brain soup. So the next time they see an older kid “having a tantrum,” they might have a different perspective or view of the situation. Then they might offer a kind smile, instead of a disapproving glare. 3. Julian is getting older. Julian has always “visited” other groups of beach-goers. We live at a quiet neighborhood beach, mostly frequented by locals. He would walk among them while they talked. He might even sit in their chair or play with a toy. Nobody ever minded. They would always dote over how adorable he was. That won’t be the case for long. As Julian continues to grow at a typical rate, his speech and cognitive development is progressing at a much slower pace. Behaviors that used to be tolerated or seen as “cute,” will quickly become viewed as inappropriate and annoying. Most people aren’t mean. We simply have societal norms — an unwritten rule book — that everyone is expected to follow. When people like Julian deviate from those norms, they are viewed as rude, intrusive, or unmannerly…unless people know they have a disability. And how would they know that if I don’t tell them? Now that I’ve started opening up to complete strangers about Julian’s autism diagnosis, I’ve found that many people are interested in learning more about the condition. Some even have friends or family members on the spectrum. There have even been a few people who have given me advice or tips because, they themselves, have been in my shoes. What are your thoughts on spreading awareness? Do you talk about your child’s disability to strangers? Have you found it helpful? Follow this Journey at Not an Autism Mom We want to hear your story. Become a Mighty contributor here .

M. Betz

When I Started Telling People About My Son's Autism Diagnosis

My son, Julian, was diagnosed with autism about six months ago. Julian was born prematurely, spent six weeks in the NICU, and has been in therapy ever since. He is nonverbal with a global developmental delay. He’s seen multiple doctors and specialists in his short four years here on earth. Needless to say, we weren’t shocked when the doctor gave us the results of his autism testing. When I first started researching Julian’s condition, Facebook’s algorithm started directing every autism related advertisement to my newsfeed. There were shirts I could wear, shirts Julian could wear, puzzle bracelets, bumper stickers — the list goes on. Honestly, I was bothered by the idea of telling complete strangers that my son has autism. I didn’t have a bumper sticker with my older son’s asthma diagnosis. I didn’t wear a bracelet displaying my own ADHD diagnosis. Why would I want a shirt telling people Julian has autism? As the weeks have gone by, and new situations have arisen, I’ve started telling more and more people about Julian’s diagnosis. I even started writing about my family’s “new normal” on my blog. Some surprising things that happened when I started opening up: 1. I’ve learned so much more about autism. At Julian’s official diagnosis appointment, his doctor gave me a pamphlet; instructed me to find an ABA therapist and sent me on my way. I felt overwhelmed, lost and alone. So I joined a couple support groups online. As it turns out, “autism moms” (and dads) are some of the best resources out there. Many of these parents have been at it for years, following the latest medical advancements and finding alternative therapies. And thankfully, they are more than willing to share their knowledge with newcomers like me.   2. I’ve found a new community. When I first started researching the best therapies for Julian, I felt like I was on an island. I felt isolated. None of my friends had children with autism, so I thought I was going to have to take this particular journey alone. But the more I reached out, I found people who were traveling similar paths. I even found myself offering help to people who are just starting to take the first steps with their child on the spectrum. The simple feeling of community has helped me tremendously. 3. I’ve met some amazing people. Once I started to tell my family’s story, other people began telling me their stories. I’ve talked with people who I ordinarily would have never met — and not just from the autism community. I’ve gotten to know families with children who have rare diseases and newly-discovered conditions. They’ve told me stories of heartache and strength, of sorrow and triumph. I am grateful for their testimonies and continue to be in awe of their courage. Opening up about Julian’s condition wasn’t easy. But I’ve found great value in the connections I’ve made and the help I’ve been given. Maybe those puzzle bracelets and t-shirts aren’t just to spread awareness. They might just be a way to let others know they aren’t alone in their journey — a reminder that autism parents are everywhere, ready to help you whenever you decide to reach out. Follow this Journey at Not an Autism Mom We want to hear your story. Become a Mighty contributor here .

M. Betz

Ways You Can Help Friends or Family Who Have a Baby in the NICU

It’s been almost four years since my twin boys, Dominic and Julian, were born. They arrived prematurely, and spent the next six weeks in the NICU fighting for their lives. That may seem a bit dramatic, but that’s actually what they were doing every day. Both of them were weak, had trouble breathing and battled serious infections. Just like many other NICU moms, I also had a family at home — a husband and three older children. It was September, so they had just started a new school year. Luckily, I had an amazing support network of family, friends and coworkers. They helped our family make it through one of the toughest times in our lives. If you have a friend or family member with a child in the NICU, here are a few ways you can help: 1. Offer a ride. New moms aren’t allowed to drive for one to six weeks, depending on their delivery. There was no NICU in my hometown, as is the case with most rural areas. The hospital was over an hour away from my house. That means I was traveling three hours each day to see my little ones. Luckily, my hubby and brother did most of the driving. 2. Bring a meal. Whether you cook one or pick one up, that’s one less meal a NICU mom has to worry about. You could even coordinate with others to bring a meal to the house each day. 3. Clean up. Offer to clean the kitchen or bathrooms. As a mom, I felt a bit embarrassed letting my coworkers see my messy kitchen. But they helped without judgement, knowing we all need a helping hand sometimes. 4. Do some laundry. All moms know the laundry never stops. Offer to either run a few loads, fold some, or simply put clothes in the correct rooms.   5. Help with the older kids. You could offer to take them to practices or drive them to school. You could even offer to keep them overnight to allow both parents time off. 6. Offer to visit the baby in the NICU. This one is reserved for the closest friends and family, as visitors are limited. But it was nice knowing a loved one was with my babies when I had somewhere else to be. 7. Get some groceries. Even if mom can’t think of a list, pick up some of the staples to help the family. Think of some easy meals they can pop into the oven. Grab some snacks and drinks. 8. Put a care package together. If you’ve had a baby, you know what moms need: snacks, drinks, coins for the vending machines, Advil, hygiene products, etc. 9. Take up a collection. Most parents never ask for monetary help. But no matter what their financial situation, having a baby in the NICU is costly. Extra gas, babysitters, eating away from home and renting rooms are just a few of the added expenses NICU parents incur. 10. Just ask! What can I do? How can I help? What do you need? Every family is different. Each one has different needs. Having a baby in the NICU is such a stressful time. I don’t know how our family would have made it through without the help and support of our loved ones. If you were a NICU mom or dad, what are some things that helped you? Follow this Journey at Not an Autism Mom We want to hear your story. Become a Mighty contributor here .