Rachel L. MacAulay

Teacher Tells Student With Autism, ‘These Tests Only Measure a Little Bit of You’

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Ben1Gail Twist was so surprised, and gladdened, by a letter sent by her son’s teacher, that she posted it on Twitter, along with the words: In tears. A letter to my 11 yr old autistic son from his school. “These tests only measure a little bit of you.”

Her son, Ben, attends the Lansbury Bridge School and Sports College in St Helens, U.K., a school for children with “complex learning difficulties.” This was his first year at the school, after he switched from the mainstream school that he’d attended for years.

Ben was the only student at Lansbury Bridge this year who took the SATs; unfortunately, he didn’t pass them. Instead of simply sending the results to his parents though, assistant head teacher Ruth Clarkson wrote the letter below, and sent it directly to Ben. In it, she recognizes that the tests only measure a small part of Ben’s knowledge and the person he is. She goes on to list his talents that she and the other teachers clearly see, including his kindness, his musical ability, his ability to make and keep friends, his artistic talents, and so much more.

Ben’s mom, Gail, told The Guardian: “He is all of the things they wrote about him – he is an amazing person. I think their words will stay with him if we keep reminding him what they said about him. When I told him he said: ‘Wow, do they really think all those things about me?’ It’s just a beautiful thing to do.”

She went on to say, “He’s such a sensitive and loving child and he’s got an amazing sense of humour – it’s amazing that the school are able to recognise that our children have other qualities than what they are tested on.”

With the current controversy about our education systems requiring teachers to “teach to the test” instead of to the individual, it’s heartwarming to hear about teachers who go above and beyond to recognize their students’ achievements. Having educators in our lives who recognizes our abilities and talents, especially when tests can’t measure them, is simply priceless.

Christie Macdonald

The Lessons I Learned From Dory

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Dory - Charlie and Jenny

If you haven’t yet gone to see “Finding Dory” — Go see it. I am by no means a movie critic, but I would recommend this movie to any parent of any child. The fact that it’s geared towards children is, in my opinion, simply an added bonus.

The movie begins with an insight into some of the struggles that Dory has. Whether or not you can relate to someone that has the same struggles–in her case it was battling memory loss–you will be able to relate to the fact that Dory has special needs that you cannot see from just looking at her from the outside. This aspect was made clear through various points in the movie: For instance, when she begins to talk to strangers or tries to make a new friend, and within minutes she is getting weird looks and comments, all simply because of a disability that she didn’t chose for herself and that she doesn’t have any control over. Sound familiar?

It’s rare that I am able to read an article, watch a book, or talk to someone who is able to change my perspective or give me a sense of, “You know what? Everything really is going to be OK.” But in an hour and a half, this movie managed to do it.

I had no idea what Dory’s background or storyline would be when I took my girls to see it, so I wasn’t expecting anything overly profound. Yet, without intending to do so, suddenly I wasn’t watching a fish anymore–I was watching my daughter. I was able to step back and see her in someone else; see her struggles and how they affect her daily. I could see how people reacted to her–both positively and negatively–and how those opinions affected her (or in this case, didn’t). I watched children laugh and play with her and adults who had less patience than the kids. I saw how so much of that rolled off her back and how often.

Specific challenges can, in many ways, affect the parent so much more than the child. I watched her play, laugh, be happy and confident, and not take it personally when some of the kids preferred to play elsewhere. I saw strong new friendships form despite her struggles and, most importantly for me, I was able to see how with the patience and love of people who care, it’s totally possible for “everything to be OK.”

We really were all created differently. Dory was just as lovable and just as smart (if not more so) as any other ‘fish in the sea’ and that was pretty fun and refreshing to watch.

I found myself thinking that, as parents, because we care so much, we tend to focus on the struggles that we see, and the differences that we notice. Kids themselves don’t always read situations, circumstances and events like we do. In my experience, children learn, grow and adapt to how they’ve been made, just like we do. And, while we can be uncomfortable watching them play by themselves in a group setting, or preferring to read alone instead of going out–they’re not uncomfortable. They’re fine. They’re happy. They’re doing what they want to do, the way they want to do it. And to be honest, that’s pretty awesome.

I was reminded this week to accept our kids as they are and appreciate them for their differences. I am understanding more and more every day that just because they struggle with things that we may not, it doesn’t mean that they aren’t going to grow up and be just fine.

I debated writing this post at all. I know it comes across as what should just be common sense. But I did write it down because I wanted to be reminded of it myself. Because when I’m in the thralls of parenting–changing routines, introducing new people and attending new events–immediate concerns and challenges can seem overwhelming and I forget to look at the bigger picture, to take a step back and remind myself of this. Some days she is growing up faster than I can even believe it and some days I feel like we’re stuck. Regardless of any of that, she’s funny, she’s happy, she’s going to be OK. And so am I.

Rachel L. MacAulay

12 Year-Old Boy Becomes Honorary Road Crew Member

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Construction1Heather Nelson, her husband Colin, and her two sons live right along a major road in Rockland, Maine, that’s currently undergoing a complete overhaul. It’s been big inconvenience for many commuters who travel the road daily, including Colin.

One day, when her husband was stuck for an hour about five minutes from home because of the construction, Heather realized that the construction company probably heard a lot of complaints about the project. But their son, Brian, was absolutely loving having the construction vehicles right outside their door. So, in an age when people seem to complain much more often than they compliment, Heather decided to thank the company for making her son so happy.

She took a short video of Brian and sent it to the Thomaston Rte 1 Project, the Facebook page for the road project, along with the caption: “I’m sorry to everyone who is completely annoyed by the cluster this construction is making….but it sure is making one autistic boy very happy that he can sit right on his doorstep and watch bulldozers and dump trucks.”

The very next day, Heather heard from a Lane Construction representative, who told her that she’d shared Heather’s post with the construction crew and they wanted to make Brian an honorary member of their crew. Before the day of Brian’s visit, one of the crew members called Heather and asked her about autism and how Brian would react to everything and what they should expect. In a blog she writes for Bangor Daily News, Heather said, “They really went out of their way to understand him.”

At the construction site, they presented Brian with his very own hard hat, along with other construction gear. They asked him if he wanted to go in various construction vehicles and, although his initial response for each was “No, thank you,” they waited patiently and didn’t rush him or force him, and he eventually wanted to take a look inside each one.

They were there for a while, and Heather wrote, “At some point, I figured we’d get some bored and tired team members. It’s hard if you’re not around autism every day to really grasp it and understand it… But we never hit that roadblock. It was clear, minutes into the evening, that this was truly about Brian. Every person there was so genuinely happy to just be there and to watch Brian. No one was on a time schedule and they bent over backwards to make sure it was all about Brian and did whatever it took to make him happy.”

While there’s no doubt that the construction crew was thankful for Heather’s original thank-you post to them, they more than returned the favor, and the honor. In Heather’s words, “Seeing Brian noticed and honored for who he is, means everything.”

Rachel L. MacAulay

A Meaningful Life, Animated

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Life Animated2For many of us, Disney animated films are just entertainment. But for the Suskind family, these films are much, much more. After all, it was through these films that their son Owen learned to relate to the world around him and make sense of it after autism took him away. And it was through these films that his parents found a way back to him.

As happens with many children eventually diagnosed with autism, Owen was a “typical” developing kid until the age of 3. Then he became a shadow of his old self, no longer talking, playing, looking people in the eye—he was there physically, but had otherwise disappeared. He stayed that way for another 3 ½ years, until one day when they were all watching a Disney movie. Owen looked at Ron and Cornelia and said, out of the blue, that he didn’t “want to grow up, like Mowgli or Peter Pan.”

It was the first time Owen had communicated in years, and it was both a substantial thought and a substantial sentence. His parents finally realized that he hadn’t been gone all of those years; he’d simply been locked inside himself. And during that time, he’d watched and memorized and processed every single animated Disney movie they’d played for him. He’d formed his identity based on Disney characters and his understanding based on the films’ lessons.

Although doctors cautioned the Suskinds from getting their hopes up, they continued to use Disney animation and characters to reach and reconnect with their son. As Ron explained, “the goal was to do whatever worked.” Ron, a Pulitzer Prize-winning journalist and author, wrote a book about the journey to reach his son, “Life, Animated: A Story of Sidekicks, Heroes and Autism,” and recently realized his dream of having the book made into a movie.

That movie, “Life, Animated,” presents Owen’s story in the closest way possible to relate to what he went through—using animation. The result is something amazing and precious, heartwarming and heartbreaking. “Life, Animated” is a stunning tribute to the selfless love of two parents who were willing to do whatever it took to help their child live in our world, on his own terms.

As Cornelia says, “Who decides what a meaningful life is?”

Angela Conrad

Dear World, I Miss You.

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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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Rachel L. MacAulay

A Beautiful Evolution: One Dad’s Autism Journey

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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.”

Emily Eggleston

Socializing Mommy: The Need for Playdates

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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.

It’s good for me to see that some of their quirky traits are not due to autism. All kids are weird.

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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.

Peter Fragola

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

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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.

Angela Conrad

Summer Is Hard.

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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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Marcella Becker

Maybe in a Different Life

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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.

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View more by Marcella Becker on her blog @ andersunddochnormal.wordpress.com.