Why I Initiate the Conversation About My Daughter Being on the Autism Spectrum

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Moms, dads, grandparents and caregivers everywhere, let this serve as your official warning: If I am out in public with my little girl, and she begins to “act out” in a way that is foreign to you, I will initiate a conversation.

I will talk about something which you might not know how to respond.

I will meet your gaze and tell you my daughter’s name is Piper, and she has autism. I am that mom.

Please don’t mistake my intentions. I will not initiate that conversation to make excuses for my child any more than I will utter those words with the intent of backing you into a corner. My goal is quite the opposite. I’ll tell you she has autism to open the door to reciprocal conversation. I’ll want you to know that as my reality plays out before your eyes, it is OK to ask questions. I will tell you her name to make her “real” to you, and not just some child having a hard time in a parking lot or on a playground.

I will tell you as little or as much as you care to hear. I will tell you autism is different for every child. I will tell you the behaviors Piper is exhibiting may seem odd to you (like continuous spinning or repetitive actions) but they are actually helping ground her in a situation that is beginning to feel overwhelming. I may even get personal, if the conversation leads that way, and tell you how painful it is when people choose to look away, as if she and what she is experiencing don’t exist at all. Because when it comes down to it, regularly averted eyes and silence hit me with a much greater force than any words someone could speak out loud. Because even if words are hurtful, I know Piper is present to the person speaking them.

I am that mom. I will tell you about Piper if you’ll let me. Perhaps we will have a meaningful conversation. That is my ultimate goal. Even if you don’t know how to follow up to what I have told you, and you change the subject or move on, maybe I will have given you something to think about later. Maybe you’ll look up some information about autism in your down-time, and the next time you find yourself in that situation with another mom like me, you’ll feel more comfortable reaching out. Maybe the information you find will enable you to give an informed answer to your own child when they ask you why my daughter was acting a certain way. As long as a door opens somewhere as the result of my words, awareness will have spread a little bit more.

I seek to spread autism awareness because it is key to the future of children like Piper. The little conversations you have with your children about her, and others like her, will shape how she is viewed and treated by her peers. This has a direct impact on self-esteem, especially in social settings, which can be most challenging for anyone on the autism spectrum.

My experience as the mother to a child with autism has taught me that sometimes people don’t know what to say, and other times, they don’t know if it’s OK to ask questions. By initiating a conversation that might feel uncomfortable to you, I am giving you my permission (practically begging you, as a matter of fact) to ask away. I am an open book, and Piper’s story is still being written. If, in response to what I say to you during our brief encounter, you step out of your comfort zone and learn, this gives you the power to help write a positive chapter somewhere in her story. Just by learning, you have the opportunity to positively impact a life. I believe that can be rewarding for both of us.

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I Am a Strong, Autistic Woman. My Feelings Are Valid.

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Is there something about being autistic (Aspie, as I identify) that tells certain people I don’t have solid feelings or thoughts of my own? It sure seems that way. I would like them to know it is quite the opposite. While I might seem more child-like at times, it does not mean I am a child who needs someone else to dictate my thoughts or emotions. And I certainly do not need my own feelings invalidated. No one does. It is, in fact, a very dangerous thing to do. Especially to young children!

Where does this idea come from, I wonder? Our differences as autistics do not make us “wrong.” No, they don’t; they mean we are in the minority, which is not wrong.

I would like more people, in general, to be aware of the fact that autism is a “different operating system” and not a defective one. It is not a disease. I have no business telling someone else how to form their morals and values, and I do not need them to tell me how to form mine. They are formed, and it is my business. I am a strong, autistic woman.

The next time anyone thinks it is their business to tell an autistic person how they should think or feel (or anyone, for that matter), think again. Is it your business? Why is it your business? Might you have something to learn from the person you are trying to change? Think about it.

 

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Dad With Autism Creates Autcraft, a Safe Minecraft Server for Those on the Spectrum

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With over 8,200 members, Autcraft lets children and adults on the autism spectrum play Minecraft in a judgment- and troll-free space.

Read the full version of Dad With Autism Creates Autcraft, a Safe Minecraft Server for Those on the Spectrum.

Read the full transcript:

Autcraft Is a Safe Minecraft Server for Those on the Spectrum

In 2013, Stuart Duncan, a dad with autism, founded Autcraft.

Autcraft lets children and adults on the autism spectrum play Minecraft in a judgment- and troll-free space.

Today, Autcraft has more than 8,200 members.

Duncan noticed parents of children on the spectrum were looking for safe spaces where their children could play the game.

“Their children were being bullied on public servers because they behaved a little differently and were easily angered.” -Duncan, username AutismFather.

Users must submit an application to join and are required to follow a set of community rules.

“I feel very successful in what i’ve accomplished because i’ve seen children go from being shy and quiet to making friends…”

“And then off to making friends in the real world and finally to getting their first job.”

“The players are the community. It’s not just me or any other single person.”

“It’s everyone, and we’ve all grown to support and encourage and even celebrate each other.”

Duncan says he’d never leave the community behind and hopes to add more game types and servers.

“What I’d hope is simply to inspire other people to do as much as I have or more.”

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What My Sons on the Autism Spectrum Have Taught Me

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As I sit down to write about what my sons have taught me through their struggles and triumphs living with a disability that they might not fully understand yet, I realize it’s going to be difficult. It would take far less time to list what they haven’t taught me. I just celebrated my seventh Mother’s Day. I was 25 and naive when my first child was born. Go ahead and do the math. I didn’t know what I didn’t know. I mean, I did a lot of babysitting growing up and I was a nanny for twin toddlers in college, so obviously I was qualified to be a mother, right?

I didn’t know that the only food I’d be able to keep down for the first four months of pregnancy was Kraft macaroni and cheese. I didn’t know I would call my pediatrician’s emergency line at ridiculous hours for ridiculous reasons (“Why is he sleeping so much?” “Is green poop normal? Google told me it could indicate too much iron.”) terrified that I’d miss something. I didn’t know I would miss something. I would pass off my sweet, docile toddler’s dramatic and overnight behavior change just before his 3rd birthday as acting out because of the new baby coming. I would blame his meltdowns on attention-seeking while I was consumed with caring for a baby and his father traveled. I would tell myself the appearance of phobias were just things he’d grow out of and that all kids were sensitive to the shrieking of baby brother. I let people tell me he would adjust to kindergarten when he was 5. That was one of the most crucial lessons my eldest son taught me. He taught me not only to listen to him but to also listen to myself and trust my mom instincts. I believe God gives us those instincts for a reason. No one knows your child like you.

I pulled him out of school under the wagging fingers of the school social worker, principal and teacher, who believed the problem was me. I was being too soft. That his hands clamped over his ears in the lunchroom, the tears rolling down his 5-year-old face, and the gagging at hot lunch day were not indicative of something more but a deliberate act put on by a child who simply didn’t want to go to school. But I had swallowed and indeed fed myself the “kids do this” line too many times. I have always gone far beyond being a people-pleaser, struggling most of my life with anxiety over what people think of me. While counseling was a huge tool in my overcoming this, it was my son A who taught me that what people believe about me is not nearly as important as what I believe about myself, and others’ opinions can’t hold a candle to what’s best for my child. A taught me that I can’t control what people believe, and just because someone believes something doesn’t make it true. When A was diagnosed with autism spectrum disorder at 6 years old, he taught me about self-forgiveness. I had to forgive myself for what I didn’t know. It had been wrong of me to punish him for meltdowns he couldn’t control. He was teaching me how to parent him and he was teaching me how to be kind to myself.

 

When I began homeschooling A, it was truly my job to teach him, and it was daunting at first. Once again, he’s taught me so much more. Some days would make me question myself again. Maybe everyone’s right; maybe I can’t do this. He’ll fall behind. But they weren’t and I can and he didn’t. A year of intensive therapy, an amazing hybrid school where homeschooled kids attend small classes twice a week, and a lot of learning later, A has blossomed in a way I could have only hoped and prayed for. Homeschooling is absolutely the right decision for him, despite the well-meaning advice from naysayers, including therapists. A taught me to have confidence in myself, and in him. A taught me that the toughest situations can get better with a lot of faith, hard work and patience. A taught me that the autism diagnosis I was so afraid of is not a prison sentence but merely a roadmap, a tool. The autism that makes it difficult for A to participate in large groups, the anxiety that makes sounds, textures and smells hard for him, also makes him understand others’ differences. When A sees a child throwing himself on the floor in the grocery store, he will be the first to say, “I feel bad for him and his mom. It seems like he’s having a really hard time.” He has compassion for a situation that many adults sadly approach with scorn and assume to be “bad parenting.”

I can’t leave my precocious son E out of this conversation. E was spitfire before he was born. He was so active, his little feet knocked one of my ribs out of place! Little did I know this little boy would change my flat screen world to three-dimensional HD color. E started teaching me when he was an infant. When I say he never slept, I am not exaggerating. The first time he ever slept more than 90 minutes at a stretch, he was 15 months old. The well-meaning advice-givers told me to let him cry it out and that I was spoiling him. Now, I am not against the cry-it-out method itself, but E needed to be held. He needed to rub/pinch my arm and comfort nurse. He needed touch and motion to feel calm and secure. Since he was conceived, E and I have had an almost uncanny connection. I knew I was pregnant with him even when test after test showed one line. You can’t not know E is there. If you know him, you know what I mean!

E has always taught me what he needs. To this day, E still needs touch to fall asleep or to calm down. E taught me that it is possible to do whatever you need to do for your children, even function on an hour’s sleep. Moms are superheroes, whether your child is “typical” or has a disability. When E started preschool at the same school A attended, he taught me to be flexible. We loved (and still love) the school, but it became apparent that E needed more than the school could provide. Due to his difficulty following verbal instruction, E was not able to complete our school district’s evaluation process accurately. He did not qualify for special education that spring, at 2 and a half. In the fall of his second year of preschool, I returned to the district’s early childhood center armed with the results of a private evaluation completed by an occupation therapist. The results showed that E had dyspraxia and sensory processing disorder. He was reevaluated at the early childhood center and this time he qualified for special education placement, a full IEP, and bus service. E has been obsessed with school buses forever, so this was and still is thrilling for him. The child who struggles with transitions runs out to that bus every day like it is a flying carpet arriving to take him to Disney World.

E taught me persistence. E taught me advocacy. E taught me that one person’s school bus is another person’s golden chariot. E teaches me courage every day. The first day that bus arrived to take him to a brand new school, he jumped on and bravely waved to Mommy from the window, headed for the unknown. E teaches me that life is an adventure. When I mention in conversations that E receives special education services, I’ve been met with an, “I’m sorry.” Please don’t be. I’m not. E is thriving. His speech has really taken off.

When E received his official autism diagnosis at 4, it wasn’t a surprise to me. Applied behavior analysis therapy was recommended. I was nervous and overwhelmed. A lot of hours, a lot of therapists coming and going through our home, and varying opinions in the autism community left me unsure. Still, we tried. The benefits are already apparent to me. E has taught me patience.

E teaches me tolerance and compassion. Public outings can be a challenge. He jumps first, asks questions later. If you’ve seen me out and about with E, you may have seen him elope and me running after him. E does not do this to be naughty. He does it because the world is his playground and when he sees something interesting, he runs straight for it. His expressive language is delayed, and verbal communication is a challenge for him. It is difficult for him to stop and say, “Mom I want to go see that.” Conversely, E is prone to sensory overload. When he needs to escape a crowded, noisy, bright place, he will simply take off. He may also seek sensory input by touching things, repeating phrases or making loud noises/speaking loudly. Sadly, people gawk at E when he does these things. You can’t look at E and see that he has a disability. E has taught me to have a thick skin. Yes, public outings can be exhausting sometimes, but I will not deprive him of going to fun places like the museum or Rainforest Café.

E has taught me that there’s often more to behavior than meets the eye, and I’m not just referring to autism. I feel like I have become a more accepting, less judgmental person all around. I still have a lot to learn, but I would like to think I’ve learned to choose kindness over judgment more often. My child on the floor of the Lego store is not being a “brat.” He is experiencing sensory overload due to a lot of people, fluorescent lights and colorful displays. Likewise, the mom on her phone at the park may be burned out. This might be the first time her kids have entertained themselves all week and she’s finally sitting and catching up with friends or reading an eBook. The person with the bad temper who seems angry at the world may really just be sad. I’m not saying behavior should be excused, but there’s usually an explanation. E has taught me that the world still has a long way to go when it comes to acceptance.

I believe my boys have taught me more than I could ever teach them. Seeing them try, struggle and try again teaches me strength. Being in tune to their needs has helped me to be in tune with my own. When A goes up to his room with noise-canceling headphones, his blanket and his Iron Golem stuffed animal, he teaches me it’s not only OK but important to take a break when it’s needed. When E runs like the Energizer Bunny, he teaches me to never apologize for uniqueness. My boys have taught me that some people will never understand, never try to understand, and that’s OK. We won’t hide away to make them comfortable. My boys have taught me love beyond measure, patience I didn’t know I was capable of, self-care, grace, and that the world is a better place with them in it.

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How My Dog Helped Me as Someone on the Autism Spectrum

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I have always been an animal lover. When I was a kid, my parents couldn’t take a walk around the block without me petting every dog we encountered. I didn’t always remember people’s names, but I knew their animals.

In fifth grade, I started struggling a little bit. I was still undiagnosed as on the autism spectrum. To cope with the issues no one understood how to help me with, I focused even more on animals, and even tried to act like I was a dog. My peers played along at first, but as I grew older, they were less accepting.

Finally, on January 13, 2000, the best day of my childhood came. My parents broke down and adopted an English Shepherd dog for the family. We named her Sadie.

 

Sadie became my best friend. She got me out of the house when it was my turn to take her for walks. She helped me to become more social with others. Sadie gave me a reason to get up in the morning. More than that, she gave me unconditional love.

Once, someone asked me why I love animals so much. I knew exactly what to say. “People in life have let me down. Animals never have.”

It was as simple as that. Some of my peers had made fun of me. They would call me names or mock me, and it only got worse as I moved into middle and high school. However, Sadie was always there. Some days I would come home from school crying, but then I would see my best friend greeting me with her tail wagging and I’d forget about my problems for the moment.

I wouldn’t have made it through those years without her, and she passed away just days after my 23rd birthday.

My dog truly helped me. She never passed judgment. Sadie showed me how to connect with the world around me and provided unconditional love. She was definitely more than just a good dog, and she will always be my best friend forever.

Erin with her dog, Sadie.

Erin with her dog, Sadie.

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Feeding Tips for 'Picky' Eaters: Making Mealtime Less Stressful

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There are many reasons why a child may have difficulty with feeding, including delayed oral motor development, difficulties with visual motor skills, grasping skills, etc. These can affect skills involving using utensils, chewing and swallowing.

Some children have trouble eating due to sensory issues. Think of a time you went to the dentist and had Novocain. You probably didn’t feel like talking much, and drinking water from a cup or eating food probably was uncomfortable because you couldn’t feel anything. Although this is not exactly what it feels like for some kids, it’s comparable. For example, a child may not know how much of a bagel to bite off, or they may over-stuff and shovel food into their mouths. This may be because they don’t have a good sense of how much food they have in their mouth or where it is in their mouth. If a child is having trouble eating, cut their food up into small pieces and monitor how much they eat at a time. This can prevent over-stuffing and a choking incident.

Furthermore, some children have trouble with trying new foods because of taste or texture. They may crave extremely strong tasting foods such as sugary sweets or salty/sour/spicy foods. On the contrary, strong flavors may be very offensive to another and he/she may only stick to bland foods such as breads or pasta. Food with certain textures can also be intolerable for children with oral sensory sensitivities. Another common issue related to eating and children on the autism spectrum can be the need for “sameness.” This can cause extreme anxiety when the child is presented with new foods. Please know that unusual eating patterns and behaviors, as well as food aversions, can be a common trait of autism. As a parent, you should never feel guilty or place blame on yourself. You are doing the best you can and doing a great job! If you can introduce a healthy, nutritious option to your child’s meals, this is a great start. Please note that if you have serious concerns about your child’s eating habits, always consult with your pediatrician to rule out medical problems or consult with a dietitian/feeding therapist.

However, here are some practical everyday tips and ideas:

  • Try cutting food into similar shapes and sizes. Slice your child’s food into smaller pieces. You may even want to try Fun Bites, which is a food cutter that cuts food (grilled cheese sandwiches, peanut butter & jelly sandwiches, fruits, veggies, quesadillas, pancakes, etc.) into bite-size pieces. It also makes food on the plate more neat and organized (which can be visually appealing for some children on the autism spectrum).
  • Introduce a visual schedule. Many children with autism tend to do best with clear routines. Use a written list and/or pictures to indicate the day’s mealtimes. Post this in the kitchen with a gentle reminder that mealtime is approaching.
  • Does your child crave sugar? If your child prefers a certain sugary cereal, try crushing a little bit to make a crumb powder and sprinkling on top of a healthier alternative such as an unsweetened oatmeal. This will provide the flavor of the food your child likes, while introducing a healthier option.  Also, a great replacement for cake and cookies is to bake a low-sugar version of banana, zucchini, or carrot bread. You can make these into muffins as well.
  • Experiment with textures and different flavors. A food aversion may be due to hypersensitivity to texture and the way the food feels inside the mouth (rather than the flavor). For each food your child refuses, try serving it a different way. Sometimes the way a food is cut or cooked can make a huge difference. For example, a child may not be able to tolerate the texture of a banana when it’s sliced, but be able to eat it whole (the outside texture of a banana is completely different than the more “slimy” inner part). You can also experiment with cooking veggies different ways. Roasting vs. sautéing vs. steaming vs. grilling can make the texture and taste of food completely different. A child may dislike steamed broccoli, but love it grilled or roasted. Another example is sweet potatoes. If you child will not eat them, try slicing thin, drizzling with oil and baking in the oven to make sweet potato fries. Serve with ketchup or their favorite dipping sauce (ranch, sweet and sour, etc). If your child gravitates to more strong flavored foods, maybe sprinkling Old Bay or Cajun seasoning over food may be a fun option. Get creative!
  • Change the environment. Try switching up your mealtime routine. Sometimes changing the experience of eating can help a child eat the food on their plate. Try having a “picnic” outside and eating on a blanket on the grass. Or, if you have a patio or deck, eat outside instead of at your usual kitchen table. Changing the environment may help make a difference.
  • Lemon zing! For children who refuse to drink anything other than sodas or juices, try introducing water with a squeeze of lemon/ lime. The strong, sour taste of the lemon may be enough to satisfy your child’s craving without the added unnatural sugar. Or, you can make lemon juice ice cubes to put in water. If your child is very oral seeking, pouring some juice into plain cold carbonated water may be a great way to provide the sensory input they’re craving.
  • Switch up the utensils. A mother once discovered that her children were more willing to try different foods if it was introduced to them on a toothpick! This realization eventually lead her to create PickEase, which is a safe, kid-friendly version of a tooth-pick. Trying this may help your child try different foods. Keep in mind that not all foods work with PickEase, however, if you think this is something that would appeal to your child, it’s worth giving it a try.
  • Try some movement before meals. Movement can be used to “wake up” a child’s body and senses. You may find that it helps to engage in some physical exercise before sitting down for a meal. Physical exercise can also help to decrease anxiety related to mealtime. Run outside, go to the playground, jump on the trampoline, etc.
  • Offer your child the same food that you’re eating, even if you think they’ll refuse it. As Temple Grandin once said, “You have to stretch these children just outside the comfort zone. You stretch just enough so they develop, but don’t go into meltdowns and problems.” Therefore, don’t stop introducing certain foods and always keep trying. The proximity of the food on their plate and the look/smell of it may help your child eventually progress to eating more foods in the near future.
  • Color the food. Did you know there are brands of food dye that are 100 percent natural and plant based? (for example red dye made solely from beets). Because some children on the autism spectrum have color preferences and will only eat foods of a certain color, adding their favorite color to a food they normally would never touch may be helpful. You can color white sauces, deviled eggs, waffles, pancakes, mashed potatoes, yogurt, omelettes or scrambled eggs using this natural food dye. Coloring food may sound extreme, but if the goal is to add variety to the diet of a child who will only eat foods that are “red,” this may be a way to introduce new foods.
  • Offer Choices. Try offering a variety of foods and allow choices within the nutrition categories. Sometimes anxiety related to mealtime can be alleviated by giving your child more control over what’s put on their plate. Offering choices, giving more control to your child and adding a variety of options during mealtime can really make a difference.
  • Be sneaky. If your child is extremely picky, you can always try “sneaking” veggies into other foods. For example, you’d be surprised how much baby spinach you can put into a yummy fruit smoothie without it being able to be detected or tasted! You can also try to put veggies into omelettes by chopping them up very finely and adding to eggs.

Other things to consider:

Is mealtime difficulty related to frustration using utensils?

-Remember, the purpose of a fork is to stab food. If the food isn’t thick or hard enough to pierce, a younger child shouldn’t be using a fork (or at least until they are old enough and have the appropriate fine motor coordination). Instead, give your child a spoon for foods such as rice, elbow macaroni, ground beef, etc.

-It’s easier to learn how to use a spoon when eating thicker foods. For example, applesauce, thick chowder, yogurt, and pudding are easy to learn from because they stick on the spoon. Liquid soup or milk/cereal are more difficult foods to learn how to use a spoon with.

-Give hand over hand assistance. If your child is having a hard time stabbing a piece of chicken with a fork, put your hand over theirs and physically guide and demonstrate for them. This can help him/her motor plan the motions needed to use utensils the right way. The visual feedback and demonstration is also very helpful.

-Proper seating. Stable positioning helps with feeding. Some children use abnormal patterns of movement while feeding themselves. Making sure their feet are planted firmly on the ground (knees at 90 degree angles) can really make a big difference.

Proper seating posture:

  • Head is upright and slightly forward.
  • Body is upright.
  • Arms are forward (and should be able to rest comfortably on the table).
  • Hips and knees are bent to a sitting position (90 degree angles).
  • Feet are resting flat on the floor.

Christina Kozlowski is an Occupational Therapist & Owner of Sensory TheraPLAY Box

sensory play box

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