Dear World, I Miss You.

Woman Writing

It’s not you; it’s me. I miss you. Sometimes I withdraw from you, but I don’t want to. It’s hard, really hard being an autism mom. My life is far from the typical life. I have a child who I can’t take anywhere. He gets over-stimulated rather quickly.  He is non-verbal and not able to use the potty on his own. He has lots of meltdowns. His life is hard. Our life is hard.

I want to participate in the things that you have to offer but it’s strenuous, to say the least. Sometimes we can and sometimes we just simply can’t. We never know what we can do from minute to minute, day to day. Some days are easier than others, but the hard days can be gut-wrenching. Nonetheless, each day always brings some amazing, priceless moments. Either way, my top priority is always my children and what they are able to handle.

I find myself wanting to make friends and getting to know the new town that I have lived in for a year and a half now, but I just can’t. Many days, my life would likely scare away any neighbor or new friend. It’s not simply about not wanting to; it’s that I am unable to at this point in my life. I withdraw from making friends because I can’t do my part in a friendship.

I just can’t be the type of friend that drops everything and is there for you when you need me to be. It’s not that I don’t want to; it’s that I can’t. My children have special needs and the number of people knocking on my door, offering or even willing to babysit is few and far between. I have to be here for my boys. I can’t give 100% into any other relationship in my life. If I did, it would be taking away precious time from my children and their special needs.

Just because I have to withdraw from you, doesn’t mean that I don’t want to be a part of you. I still want to hear from you, even if I may not respond right away or be able to participate. It’s not you; it’s me. Well, it’s a little bit you. You’ve gotten harder; I haven’t changed. I am still the person that I was ten years ago. I still love to laugh, talk to friends, go shopping, exercise, help the needy, host family and friends, watch the St. Louis Cardinals win, and so much more. That is all still the same. What has changed is that I have children who are unable to do all of that. And if they can’t, I can’t. World, please know that I want to, I just can’t.

Therefore, until the day comes when I am able to do some of the activities like I used to, I will continue to watch and care over my children. I will continue to feel withdrawn from you. I will continue to refrain from making new friends because I just can’t. It’s not an easy life, but it is what it is and I have an obligation to my children. But keep being you, and we’ll see you when we can.


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U.S. Army to Open First Autism Therapy Center

Army Dad and KidAccording to many military parents, the U.S. Department of Defense isn’t the most progressive employer. Some parents of military dependents with autism—said to number 23,000—have been trying to find services for those dependents for years.

Others have found amazing services for their children, only to lose them when they’ve gotten reassigned to another base and country. Parents have even had their children waitlisted for multiple schools and centers, as they get on a list, get transferred, put their child’s name on another wait list, and get transferred again. In the meantime, their child is missing out on vital therapies and interventions.

In a move to help alleviate this problem, the Army has announced plans to open its first therapy center for children with autism. The JBLM Cares Center will be part of the Madigan Army Medical Center in Tacoma, Washington, and is expected to start providing care in early 2017. The Center will be overseen by Lt. Col Eric Flake, a doctor and the director of Madigan Army Medical Center’s developmental and behavioral pediatric program.

Lt. Col. Flake explained that the center will have programs to help parents whose child has just received an autism diagnosis, as well as “group after-school therapy opportunities.” Furthermore, he said, “During the work day this will also be a therapy center where kids will get direct speech therapy, will get direct occupational therapy.”

Gretchen Shea, a regional administrator for American Military Families Autism Support—an online group for parents—says that many families have mixed feelings about the announcement. But while it may be, in her words, a “drop in the bucket,” we’re big believers that small steps in the right direction are better than no steps at all. Sometimes small movement is all you need for something to gain momentum, and we hope the Department of Defense considers the need and opens more autism therapy centers where possible.

A Beautiful Evolution: One Dad’s Autism Journey

pablo-10Pro golfer Ernie Els was used to the nagging voice in his head, especially as he was lining up his shots during tournaments. But he wasn’t used to hearing it in his personal life, until his son Ben was born. Ben was slow to hit his development milestones and never met Ernie’s gaze, and he was eventually diagnosed with autism. Like many parents of children on the autism spectrum, Ernie wondered what he’d done wrong—how he could have prevented his son from “getting autism.”

Ernie’s wife Liezl explained to the New York Times that they’ve all come a long way since those early, anguished and confusing days—especially Ernie. Ernie stated, “At 24, I was way ahead of my time as a golfer,” he said, “but as a man I was nowhere.” These days, Ernie’s game is off more often than it’s on, but he’s found peace when it comes to his son.

In 2008, Ernie and Liezl decided to stop hiding their son’s autism, and went public with the news. They started the Els for Autism Foundation to raise money and awareness, and moved from London to Florida. There, they decided to help construct a school for children on the autism spectrum, providing $6 million to get the Els Center of Excellence started. The school opened in August 2015, taking seven years to be built, with a price tag of $35 million. The Els Center enrolls 100 children, ages 3 to 14, including Ben Els. They plan to open another school, for older students aged up to 22 years, by next year.

Besides attending his new school, Ben also accompanies his dad Ernie on his weekend golf rounds, hanging out in the cart and reading some of his favorite books. Ben is not quiet, and Ernie used to spend a lot of time apologizing to the other golfers for Ben’s noise. He no longer apologizes, as the other golfers are used to Ben. What’s more, he no longer feels like he has to apologize for anything about his son. “I just go in his world. I’m kind of at peace because I’m listening to my boy being himself.”

As Liezl explained: “Ernie’s relationship with Ben has gone from, ‘What am I going to do with this kid?’ to ‘When can I spend time with him again?’” she said. “It’s been a beautiful evolution.”

The Gate in London Becomes First ‘Autism Friendly’ Restaurant

The Gate Restaurant London

Without much fanfare, the National Autistic Society of the U.K. just honored The Gate in Islington, England, with the society’s first-ever “Autism Friendly” award given to a restaurant. The Gate, a vegetarian restaurant, has been in business since 1989 and has locations in both Islington and Hammersmith—suburbs of London.

The Gate in Islington has been helping to spread autism awareness for about two years now. In 2014, the restaurant partnered with local autism charity, Ambitious about Autism, to support local primary schools through fundraisers, school visits, speaking engagements and hands-on cooking classes with the kids. Their objectives for 2016 were to procure an “autism friendly” designation from NAS and to launch the “Chocolate Factory,” a “social enterprise” with potentially large repercussions. One objective met; one to go.

With the Chocolate Factory, The Gate founders plan to develop a chocolate business that will be run by students at Ambitious about Autism’s Ambitious College. These students will both make and sell the chocolate, and all funds raised will go straight back into the business. The goal is to give the students marketable skills that they can use to increase their “future life and job prospects,” as well as make the project self-sustaining.

And that’s not all. The Gate designates itself, “Friends of Autism,” and says that, “we know how difficult it is to go out to a restaurant if you are autistic.” To help families and individuals with autism, they’ve created a guide that can be read BEFORE diners visit the restaurant. The guide gives clear and detailed instructions on everything from making a reservation, to finding the restaurant, reading the menu and interacting with the wait staff. It also notifies the reader that the restaurant maintains a “Chill Zone” with a sofa area, where anybody can go relax and have both space and time alone.

The Gate Restaurant London

Believe it or not, that’s not all that The Gate does to make it easier for individuals with autism to dine there. It also has an Autism-Friendly Menu, which talks all about the vegetarian ingredients used in the meals, complete with colorful photos and detailed descriptions. In addition to all of this, the restaurant practices sustainability in every facet of its business, including recycling and using locally sourced foods.

Co-founders Adrian and Michael Daniel have set the bar for other restaurants, but the bar is nowhere near too high. As they say in The Gate’s mission statement, “Accreditation is not a badge for us to wave about; The Gate wishes to blaze a trail for other restaurants across the world by us all allowing people affected by Autism to integrate more freely in society without feeling stigmatised.” Congratulations to The Gate: May you continue to lead and inspire, and may you soon be just one of many designated “autism friendly” restaurants.

My First Lesson on Autism Came Too Late

Teacher Thinking

I was a teenager working my very first job. I was a child care attendant at a little mom and pop fitness center, and I had never heard of autism. To be fair, this was over twenty years ago, (yes, I admit it,) and I lived in a pretty small town. I really liked my job. I loved the kids, and if we ever had a difficult one, the time limit was only an hour and a half. I could handle any kid for an hour and a half. Then came Sam.

When Sam’s mother walked through the door I knew that I was in for a very long ninety minutes. She would take the full time, and I could hardly blame her for needing the break. Along with Sam came both and older brother and an infant. Sam’s brother, David, would always make me laugh. He was charming and always tucked his sweatpants into his socks. The infant, Max, did as infants do. Sam was a handsome boy with beautiful blonde locks, who would never look me in the eye.

The child care area consisted of two small rooms. No matter how many kids were in attendance, sometimes that second room would have to belong to Sam. We split the kids up, the other attendant would take the smallest kids and I would take the big ones, the ones who could handle being around Sam. Sam wasn’t violent, he just didn’t seem to know his own strength, which, for a four year old, was impressive. He would pace back and forth, and if a child was in his path, he would simply mow the child over. I knew that he wasn’t mean. I wanted so badly for the other kids to understand that, but every time it was the same. We just had to steer clear of Sam. Some times we had to call down to his mother, to pick up early if he was having a bad day. She never seemed mad, just… defeated.

Sometimes Sam would look out the window and have a little smile. I would stand next to him and look too, wondering what he saw. I wanted so badly to connect with him, I could only imagine how his mother felt. About fifteen years later, I didn’t have to imagine. My own son was diagnosed with autism.

After working at the fitness center for years, I got my associate teacher certification to teach preschool. I taught for years before I had my son. Sometimes I would come across other children who would not look me in the eye. Maybe they would pace or hum. Still, I had never heard word one about autism. All of those hours in class, and not one word. The only course I got was the crash course that came along with getting a medical report.

Years later, I took a class at the local college. It was called, “exceptional needs,” and it covered many different special needs. It was considered an elective and was only offered every other semester. I needed that class. I needed it long before my son’s diagnosis. I needed it long before teaching. I needed it for Sam.

Learning about children with special needs should NOT be an elective. As an early childhood educator, you may be the first teacher a special needs child will have. They deserve a teacher who can identify a need. Teachers need tools to help the other children understand a classmate’s behavior, because those student will go on. Some special needs children will become integrated and some of those neurotypical kids will grow up. They might have children. Those children might have autism. Their crash course should not come with a medical report.

Sam would be a grown man now. I don’t know anything about him. However, I do think about him, particularly when I hear my name over the loudspeaker at the gym.


This post first appeared here, on RaisingJedi.

This Two Year-Old Only Has Eyes for Snow White

Many people swear that Disney World is the most magical place on earth, and for one little boy and his mom last month, it proved to be just that.

Two-year-old Jackson Coley was diagnosed with non-verbal autism about two weeks before the Coley family went on a trip to Disney World. Jackson’s mom, Amanda Coley, is no stranger to autism, as her middle son also has the diagnosis. He, like Jackson (known as Jack Jack), started out as non-verbal, but is now highly sociable. Amanda hopes that Jack Jack will grow the same way.

In the meantime, the little boy is friendly and sociable to his family, but fearful and quiet when among strangers. Until he met Snow White. Unlike with the other Disney characters, who Jack Jack pulled away from, he appeared entirely comfortable with Snow White. Amazed and elated, Amanda and her husband took photos and video of the heartwarming moment.

“To our surprise, he didn’t get up and leave,” Coley told TODAY. “He just suddenly melted and was perfectly content.” Once you watch the video, you’ll melt too.

Amanda originally posted the video on her Facebook page when the family returned from their Disney vacation, but after it was shared more than 6 million times, she shut it down. For privacy, she then decided to move it to YouTube, where it’s been seen almost another 3 million times.

And we’re not the only ones who love it—Jack Jack is a big fan too. According to Amanda, he loves to crawl into her lap when she’s at the computer, point to the screen, and use sign language to say, “More.” It seems his love for Snow White is still as strong as ever.


Socializing Mommy: The Need for Playdates

Emilys Puzzle

I was hit with a double whammy when it comes to playdates. First, my son was diagnosed with autism. Everyone from the doctors to therapists to many well-intentioned but ill-informed friends have suggested that I get my kids involved in playdates to “socialize” them. Because, you know, kids with autism are socially awkward. It’s true, my two boys are quirky little fellas and they sure can stand out in a crowd at times. Right after my son was diagnosed, I would nod my head in agreement to everyone’s suggestions, positive that they knew more than I did. I was determined to socialize the crap out of my kids.

Then, as if I wasn’t under enough stress already, I decided to homeschool my children. What?!  Homeschool two boys with autism?! They’ll never leave the house. Of course, I never heard so much talk and concern about “socialization” until I brought up homeschooling. Once again, well-intentioned but misguided and misunderstood concern. Needless to say, I fell for all the rhetoric and got to work setting up as many playdates as I could. I was determined to prove that my autistic, homeschooled boys were not going to be socially awkward; well, any more than they normally would have been.

Anyone with small children was fair game for playdates. I asked them all. I was surprised how many people readily agreed. Only a few looked at me like I was nuts.  Within a few weeks I had our days so full of playdates that we didn’t have any time for school and absolutely no down time. I soon found that, when it comes to playdates, quality beats quantity every time. There were certain kids that my boys just didn’t click with and, worse, there were certain moms that I didn’t click with. The playdates became more of a hassle than a fun get-together. We’d sit uncomfortably, staring at the children playing or fighting and counting the minutes until I could make a polite escape. After those playdates I would often feel more exhausted than refreshed.

Somewhere along this road I met a couple of moms where everything just clicked. The kids got along well, our parenting styles were similar and I actually enjoyed their company. When I left these playdates I always felt more energized. It was during one such visit, as I watched the kids each doing their own thing, sometimes playing together but mostly apart, that it occurred to me that these playdates were more for me than for my kids.

As my kids get older they automatically gravitate towards other children. They don’t always play typically, but they are drawn to and curious about other children. If nothing else, they enjoy watching the other kids play. It occurred to me that my kids are being socialized when they are playing with their grandparents, with their cousins, when they are at the park or a class or a birthday party. Kids will play with other kids. If they don’t like them they don’t play with them. They don’t get hung up on social niceties like adults do. They have a lot of opportunities to be around other children of all ages just by being a child themselves.

As a stay-at-home mom, I’m the one cooped up in the house or car alone with two tiny beings for 10 hours a day. I shuttle them from home to their classes then back home again, only engaging momentarily with other parents in passing. It seems to me like stay-at-home moms are the ones that need socialization, yet no one ever talks about that.

Having frequent playdates benefits moms in so many ways. First, it’s amazing how good it feels to share a parenting horror story with another mom and have her nod her head knowingly. Even if she doesn’t have any solutions, just knowing that you are not alone makes a world of difference. Second, playdates are a wonderful opportunity to see how others parent—How they interact with their child and how they handle their child’s behavior. Third, it’s a great way to watch other kids of similar ages to see if your child is progressing typically. Finally, sharing parenting tips and tricks with one another is invaluable. I’ve picked up a lot of great ideas from watching and talking to other mom friends on how to handle situations with my children.

When you have children with special needs, it’s even more important to find another special needs mom to connect with. I can’t begin to explain how good it feels to talk with another mom who’s in the trenches daily, and can relate to the subtle difficulties of raising a child with special needs. When in public with my children, I’m so used to being on guard, watching their every move in order to avoid a million different unpleasant scenarios. It’s such a liberating feeling when having a playdate with another special needs mom to be able to just relax and allow your child to play, interact or not interact as they wish.  No explaining, apologizing, prompting or correcting…just playing. It’s heaven.

However, playdates with typical children help me to see that “normal” is a broad term and that typical children can be socially awkward too. It’s good for me to see that some of my sons’ quirky traits are not due solely to their having autism. All kids are weird. Period.

It’s important to hear about the struggles that parents with typical children face. It helps me realize that I’m not the only one with unique parenting struggles. They struggle too. We are all just blindly feeling our way through this parenting gig.


The original version of this blog piece first appeared here.

Coming to Terms. It’s OK to Be Scared.

It's OK to be scared.

When Jax was still a few months away from being the cute little monster he is today, I wondered what it would be like to have a son. I was so excited to play catch with him in the backyard and teach him how to shave. I was also concerned that I wouldn’t be able to sit back and relax after a long day at school. I wondered if I’d ever have the time to watch an entire Yankees game ever again or if I’d always be too tired to stay awake for an episode of Game of Thrones. I figured my morning cup of coffee (large hazelnut, light with skim milk and one sugar) would be a thing of the past because I’d be spending my paycheck on diapers and a college education.

How cute were those concerns, right?

Those were the days. The last week has been insane. I finally felt that I couldn’t hold anything in anymore and decided I wanted to be open about my concerns…. No, not concerns–my fears. I was afraid. I am afraid. I’m scared about what is… what could be… what might be… going on with my son.

On one hand, he’s the smartest, cutest, most charming guy in the world (clearly all traits he inherited from his father). On the other hand, his communication skills are “developmentally delayed” and he is struggling to communicate with us. He wants to tell us what he wants and needs so badly. I can tell. I can feel it in my heart and, as a parent, you know–you just know–when your child is tying to tell you something.

Here is the point in this blog post where I have to take a second to admit I’m in tears and I’m scared. I’m scared because I’m the dad and I’m crying. I’m supposed to be the big, brave guy for my son, right? I don’t know how I’m supposed to act anymore. I really don’t. I feel like the most helpless and horrible parent ever.

So here we are… Just another day of me complaining about my son not being able to talk or tell me what he wants. Great, another blog post where I rant and rave about my inability to help my son. Yet, for me… It’s not just that. It’s a chance for me to say, “This is what I’m going through, this is what we are dealing with, and it’s OK. It’s OK to feel like your world is caving in and that you aren’t ever going to be able to do as much as you wish you could do to support your child.”

So as I just said, here we are… at a point where a feeling of loneliness and a feeling of helplessness overtake days of smiles and laughter. Where being strong because you’re the dad and the one with the educational background and the one with special education experience is supposed to reign supreme.  Yet, the only thing you’re sure about is that you aren’t sure about anything.

I used to think worrying about nightlights and how many ounces of milk he drank in a day were the stresses that caused parents to drink multiple glasses of wine with their Xanax. So, for me to admit these issues is at least the beginning of what we are going to be dealing with for the time being. It at least gives me a point of reference. It is the point where I say that I don’t know what the hell is going on and I surely don’t know how the hell to fix it. But I do know this is the point where we begin trying. (Not that we haven’t been implementing strategies to support his development already).

I’m not writing this blog post as a parent of a child with autism. I’m writing this post as a parent of a child who is not talking, as a parent who has been told his child is possibly on the spectrum, and as a parent who has struggled with knowing where to turn for help and support. I’m writing this blog post as a parent who is coming to terms with the initial stages of a child who is showing a developmental delay.  I’m writing this blog post as a parent who has read plenty of people write about “being strong and all will be OK.” But not enough people write that it’s OK to be mad, and sad and confused and more likely… It’s OK to be scared.

Summer Is Hard.

Summer Sunglasses

It’s that time of the year again… Summer! I have a love/hate relationship with summer. Don’t get me wrong, I enjoy the warm weather. In fact, I love the warm weather! I love being outdoors. Before I had my children, I loved to soak up the sun as much as I could. There’s nothing better than having a little tan, watching baseball, cooking out, picnics, going to the lake, taking vacations, enjoying the summer holidays, etc.

It’s amazing how quickly your life can change. Seven years ago I was enjoying all those summer activities. Now, six years after the birth of my first son who has severe autism, I no longer have any idea what it is like to enjoy the slightest ounce of summer fun.

My oldest son is an eloper and is attracted to water. Therefore, having him around any water in the summertime can be dangerous. With that said, we spend a lot of our time locked in our house so he doesn’t elope and get into a dangerous situation.

Taking him to a baseball game is totally out of the question. He has severe ADHD, severe autism, and sensory processing disorder. Those three things do not allow for a child to sit still or handle the smallest of crowds, let alone a baseball game or a short weekend getaway somewhere.

I haven’t been able to attend any summer holiday activities either. Taking my boys to a family gathering that entails a cookout, fireworks, or whatever your family might enjoy doing is totally out of our league. Between the high anxiety, rigidness of routine, and all the traits that autism brings into their lives, anything out of the ordinary, such as holiday fun activities, cannot be done. If I try to attend, I find myself back in our van and on our way home within 20 minutes of arriving.

Summer is very hard. It is just as hard as any other season of the year. Severe autism is the same today as it was yesterday and as it will be tomorrow. Sometimes it is easy to forget how trapped we are in an autism house. If you are like me, I am so used to our routine and strict schedule that I simply forget what life can be like in the “typical” world. But, as soon as the nice, warm weather arrives, I hear the neighbors outside enjoying their pools. I hear their friends gathering for cookouts and I am reminded of what life is like for my family.

However, I won’t let it get me down. Even though I would love to enjoy just one of the things that I used to love to do, it’s OK that I don’t. Do I get jealous at times? Sure I do! Does it make me feel lonely and isolated? Of course, but it is our life. Therefore, I will continue my love/hate relationship with summer and make sure we do the best that we can to enjoy it our way.


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Maybe in a Different Life

Marcella Becker

“Would you like to join us for an ice cream?”

“Yes, very much, thank you!” – That’s what I would wish to answer.

“No, unfortunately we cannot.” – That’s what I do answer.

“Maybe in different life.” – That’s what I think.

If friends with healthy children ask me whether my son and I would like to accompany them to the movies, to the shopping mall, or just to have an ice cream, my answer is usually: “No.” And I immediately think: “Maybe in a different life.” Sometimes I even image what the reaction would be if this statement would not only remain in my mind, but would be spoken out: “No. Thank you for asking, but unfortunately we cannot. Maybe in a different life.” At this point I have to mention and emphasize that we have great friends who try really their best to include us. Even if this means going swimming at the most unusual times or accompanying us to the most distant and lonely outdoor playgrounds.  

It is very difficult–almost impossible–to have a social life with a disabled child. It is hard work. It is tiring. It takes incredible strength.

I am a very sociable person and I like to have people around me. I enjoy meeting up with friends and I love to discover new things and get totally enthusiastic about new and interesting impressions. I studied in the U.K., and I’ve lived in Brussels and the U.S., and I always wanted to pass on my impressions and travel experiences to my son. It was my greatest wish to visit other countries, events or museums with him. On our first and, so far, last museum visit, my son ripped off the tail of a stuffed animal. After I tried to fix it, we escaped. Evan and I are experts when it comes to escaping. We could rob a bank in no time. We would be gone before anybody realized that we were there.

“You cannot expect people to tolerate Evan’s behavior.” – That’s what a friend of mine said once to me. I think about her words quite often. Is Evan’s behavior unacceptable? Should we not participate in social events or even be a member of this society? I tried to answer that question value-free; at least as good as possible. Can I expect other people to tolerate Evan’s behavior? Evan is loud–very loud–and he’s wild, boundlessly wild and impulsive, uncontrollably impulsive. If we enter a room, it gets loud suddenly and I have the impression that all eyes are focused on us.  It is similar to a Wild West movie. The Sheriff enters the saloon and all eyes rest abruptly on him. The bad guys immediately notice that he does not belong there.

Inclusion. When I think about inclusion, I automatically think of our social life. Inclusion. Nice. Such a nice dream. For us at least. Evan and I prefer cafes for handicapped people. We visit events organized by handicapped people and for handicapped people. We still drive to distant and not highly frequented playgrounds. We prefer lonely forest paths.

In Germany, there are nursing homes for the elderly, psychiatric clinics for mentally ill people, and disabled homes for handicapped people. Everyone seems to be divided into groups and remain among their peers. Please don’t get me wrong. I am a real fan of inclusion. If inclusion would run for President, Evan and would definitely be sitting in the front row, cheering for inclusion. We would have huge signs: Go Inclusion, Go! But as long as inclusion only sounds good in theory, similar to a very well-thought-out campaign, it unfortunately remains just a theory. Inclusion begins in the mind of people. Those who are not excluded in the first place, do not then need to be included.

I would love to participate in events to which Evan and I are explicitly welcome and Evan is encouraged to be able to participate in his own way and to his ability. I would love to visit cinemas or theaters, where the audience and the actors continue happily even if Evan is dancing around the stage or accompanies the play quietly on his air guitar. We wish to participate boundlessly and actively in everyday life. Is this outrageous to demand? When it comes to inclusion, no:

“Inclusion is the process whereby every person (irrespective of age, disability, gender, religion, sexual preference or nationality) who wishes to can access and participate fully in all aspects of an activity or service in the same way as any other member of the community. Inclusion requires time, space, effort and resources but it creates a society which is fairer, more cohesive and richer.” (Source: ACE Disability Network)

Is Evan’s behavior an unreasonable demand? Honestly, I do not know. Maybe it is for some people. But nevertheless, we have the desire to participate in everyday life and to be a part of this society. Of course, Evan must keep to certain rules. But he will never be socially compliant and will never meet the expectations of others. And you know what? He does not need to.

Autism is not just a diagnosis. It is our life. I cannot stress and emphasis this sentence enough: To get along in a world and society that is not made for autistic people is a daily effort and challenge. For Evan and myself. We face this challenge. Every day anew. We go swimming, mostly when the swimming pool is empty – but we go. We arrange to meet up with friends. We go on vacation. We visit indoor playgrounds – half an hour before they close. We go to theater performances, sitting in the back row so that we can escape quickly and undetectably. I always think that I’ll never do it again, but then determine after a few days that I will always keep trying. We don’t give up.

Evan and I love life and want to be part of society. We do not want to lock ourselves in at home. I am very grateful that I still have the strength and power to carry us both through these experiences and challenges. I keep the negative experiences away from Evan, thanks to my impenetrable “mother shield,” so that my son can walk smiling and happily through life and continue to believe in the good in life and in people. I want his little independent soul to grow in peace and full of trust. I must admit that my impenetrable mother shield has already suffered a lot and only stays together out of habit sometimes.

Although Evan has already undergone a lot of negative experiences in his life, this wonderful little boy has the gift of lovingly approaching people and simply taking their hand and believing in the good in everyone. Without any reservations. Whatever ethnicity, disability or social class they belong to. Is that not great? Moments like that make me believe that this little boy is so much wiser than a lot of other people (including me).

I also believe inclusion has its limits, but Evan and I still hold onto a world without stereotypes and boundaries. We believe very strongly and with all our heart that one day we will be guests of honor in the front row at a social event. Not in a different life. In this life. Welcome, little Evan! Does it sound idiotic? I don’t care.

View more by Marcella Becker on her blog @