How We Gently Pushed Our Son With Asperger’s Out of His Comfort Zone

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My 19-year-old son, Noah, was diagnosed with Asperger’s syndrome when he was 3, and I’ve felt uncertain about how much to push him out of his comfort zone ever since.

Years ago, when the other 5-year-old kids in the neighborhood were riding bikes, our son was content with reading books and playing Pokemon. When Noah was sitting on his bike, he would grab onto my husband or me, clench his jaw and tell us he was done 30 seconds after getting on.

I understood how impossible bike riding seemed to Noah. What was fun for other kids was not fun for him. But as Noah got older, I was concerned that he’d lose opportunities to play with friends if he didn’t learn how to ride. And so during the spring before middle school began, we tried one more time.

Finally, he could see the benefit of learning to ride. He’d be able to get away from his annoying parents more easily. He could be with his friends. He could have more freedom and independence. At the same time, we understood the immense obstacles that stood in his way. He didn’t feel comfortable or stable when both of his feet weren’t on the ground. He had to think through each movement before doing it and would look down at his feet when he started to pedal. It was hard for him to pay attention to his environment; he might encounter potholes, stop signs and car doors in his path.

Brenda Dater the mighty.3-001

So we came up with a plan. We made a list of all the small steps Noah would need to take in order to ride his bike independently. We took away the pressure of having to learn by a certain date or age. We let him know he could set the pace and duration of training; he might work on one step for four weeks and another for four days. And we celebrated each new success no matter how small it might seem to others. After four months of practicing for up to 10 minutes each day, Noah got on his bike and rode down the hill from our house and I literally jumped for joy.

I have tremendous respect for the amount of effort my son has to expend every day to make sense of the world. Sometimes he’s exhausted and just wants to do what makes him feel calm and safe — being with good friends, playing with the dog, reading and playing video games. When he’s had enough time to do activities of his choosing, he’s more able to be flexible because he doesn’t feel as if he’s on high alert. And that’s when we can encourage him to try new things.

What we consider before gently pushing our son out of his comfort zone:

1. Is this something he wants to do?

If he’s motivated and interested, we can push a bit more. If he’s completely uninterested, we have to find a reason that resonates with him.

2. Is this something he needs to do?

He didn’t need to learn to ride a bike when he was 5. But by middle school, it became more important.

3. Does he have an underdeveloped skill that would help him reach a personal goal?

Noah wants to write a book but feels stuck. We talk about how people structure unstructured time and break down large goals into manageable pieces. We don’t tell him what to do but discuss what he thinks might be worth trying.

4. Is he fragile?

We don’t push when Noah has already hit his limit. We try to help him remember how to lower his stress and anxiety and connect him to the support and structure that works for him.

It helps me to remember that my son is on his own timetable. Comparing him to his peers leads me to push him for the wrong reasons. I can accept him for who he is and support him to try new things.

As I wrote in Parenting without Panic, “We need to provide just enough of a challenge to stretch our child’s abilities in a safe environment. Too much challenge and our children feel they are failures. Too little and they assume we don’t believe they are capable of much.”

Follow this journey on Brenda Dater’s website.

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When a Little Boy at Macy’s Asked About My Feeding Tube

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I had been struggling with severe anorexia nervosa for months, going in and out of hospitals on medical floors and psych floors. When I went out in public the condition of my body was shocking to people. I felt ostracized, ugly and different anywhere I went.

This was a good week. I was out of the hospital and thanks to a nasogastric feeding tube, had enough energy to get out of bed and walk around a bit. It was wonderful to get outside and away from the repetitive thoughts of my eating disorder, even for a few minutes. But it didn’t last for long. The stares snapped me back into reality and I heard whispers I knew were about me. As I walked into a craft store, a mom loudly commented to her son about how “gross” I looked. She didn’t even lower her voice to whisper.

I realized my disorder made other people so uncomfortable, they forgot I was actually a person like them. I was a person with feelings and eyes and ears. A person who eight years later can still remember this moment perfectly and how it made me feel like I deserved to be belittled because of my mental illness. I heard the comments, saw the stares and lowered my head a bit further as I moved on with my day. I pulled my hood over my face in the 80 degree weather so that I would feel a little less like a public spectacle or remnant of a circus freak show.

At Macy’s I shopped in the kids’ section because that was what fit me. I was by the fitting rooms where a mom and her son were shopping. He must have been 3 years old. He looked up at me and with a great curiosity said, “Hi, I’m Riley.” I smiled. “Why do you have a tube in your nose?” he asked. I smiled again. In this interaction with a toddler I didn’t feel judgment; I felt connection. I was a person, he was a person and he had a simple question for me. He asked politely. He looked me in the eyes. He asked my name.

I wasn’t exactly sure how to answer. No one had asked me that before. 

The boy’s mom jumped in and told him that some people just need help eating. He nodded, seemed satisfied with her answer and showed me a t-shirt he was getting. I looked up and simply said, “Thank you,” before we went our separate ways.

Why was a young child one of the few people who treated me like a person? At what stage in life does curiosity and acceptance turn into judgment? What this world needs is less judgment and more Rileys.

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This Dad Created a Superhero to Explain His Epilepsy to Kids

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John McLaren remembers falling to the floor and hearing his son shout, “Daddy fell down, Daddy fell down.” The 43-year-old from Durham, North Carolina has epilepsy — he was diagnosed at 14 and has experienced seizures into adulthood.

After this seizure, McLaren realized his son David, then 2 years old, knew nothing about his condition.

“I was afraid I would pass away early and leave my son without a dad,” McLaren told The Mighty. “I wanted him to have something to remember me by.”

So he created a comic book to explain epilepsy through a superhero named ToteMan.

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McLaren modeled ToteMan after himself, explaining epilepsy and seizure in terms kids can understand. He wanted his kids to know what to do if he hit the ground again.

“How do I explain this to a kid? It’s hard enough to explain this to an adult, much less a child,” McLaren told The Mighty.

The answer? Through fun illustrations. The comic details ToteMan assisting a child who’s just had a seizure, demonstrating what to do if you’re in a similar situation.

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The name “ToteMan” comes from a job McLaren had in his 20s. He worked at a racetrack in New Jersey where he’d fix the totalisator (tote) boards and betting machines. If the tellers needed assistance, they’d yell for a “toteman.” McLaren explained that the totemen would rescue the teller; they were the superheroes at the track.

ToteMan’s number one accessory, a screwdriver, pays homage to McLaren’s career. He’s repaired things his entire life. He started out fixing machines like copiers and now works in IT fixing technology.

“Thor has a hammer,” McLaren said. “ToteMan has a screwdriver.”

McLaren goes to ComicCon, a convention for comics and other related art, with David and gives out free copies of “ToteMan.” He’s worked with the Epilepsy Foundation of America to give out comic books through its events. He doesn’t want to charge anyone for the comic. One day, McLaren hopes “ToteMan” makes it into hospitals and schools. Until then, he’s just happy he’s made a lasting memory for his kids.

You can download the comic for free here. The book is now available in Spanish too.

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This Teen’s Project Could Prompt Lego to Produce Toys With Disabilities

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A 14-year-old has designed a Lego set that would make the toy industry much more inclusive.

Kendall Waltz, who lives in Las Vegas, recently submitted an idea for a model toy set including figures with disabilities to the Lego toy company.

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Kendall Waltz

Kendall presented her project to Lego through Lego Ideas, a program where anyone can submit their ideas for Lego models to potentially become real Lego products. If the idea garners enough support and the company selects the design for production, the original designer will take in 1 percent of the toy set’s profits.

The set includes nine mini Lego figures, four wheelchairs and one motorized wheelchair, one wheelchair ramp, one helmet, one walker, five different service dogs including a seizure alert dog and an autism service dog and one seizure helmet.

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“This project’s goal is for everyone to be included while playing Lego,” the project’s description reads.

Kendall, who wants to be a geneticist when she grows up, says she got the idea for the project when she became interested in service dogs through researching how they can help kids with conditions like spina bifida and cerebral palsy.

“While learning about service dogs, I saw that there were barely any toys [that included] them and barely any toys for kids who are just a little different,” she told The Mighty in an email. “It bothered me, so I emailed a bunch of toy companies about it. Lego told me about Lego Ideas, and I submitted the project.”

If Kendall’s model gets at least 10,000 votes, Lego will review it, and, if it meets the company’s required criteria for new toys, designers will transfer her template onto an actual product to be sold around the world. If she wins, Kendall plans to put her percentage of the profit toward 4 Paws for Ability, an organization that pairs service dogs with children with special needs. In the future, she’d also like to expand her project to include a Lego wheelchair-accessible playground and a wheelchair motocross park.

“This project is needed because every child deserves to play with toys like them,” Kendall told The Mighty. “I personally have a Lego figure that I made that I think looks like me, and everybody should have one like that.”

Take a look at some of Kendall’s models in the photos below.

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To learn more about Kendall’s idea for an inclusive Lego set and to vote to see her idea become a reality, head here. To learn more about the Lego Ideas program, head here.

Photos from Kendall Waltz via Lego Ideas.

Related: Why Some Parents Are Dismayed Over Lego’s New Wheelchair-Using Figure

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The Unexpected Help My Son With Autism Received From His Class

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It seems you hear more and more about children getting bullied, especially those with special needs. My 6-year-old son, Brock, who is on the autism spectrum, unfortunately has already been a victim of bullying at his young age.

When he started public school last year, I was worried for him because he’s quite vulnerable and will do anything to make his friends happy, even at the expense of himself. He didn’t talk much of friends at school, besides here and there. And I heard certain names of kids being talked about more than others.

When I had his very first individual educational plan (IEP) meeting last November, I heard something all parents wish for their kids, but even more so when you have a child with special needs. Brock had a very special best friend. And not just one friend but a whole group of them.

You see, Brock is scared to try new things and would do everything in his power to avoid doing so. But that started to change with a boy named Cooper. When Brock had to wear glasses after his eyesight went bad, his teacher tried encouraging him to put them on but to no avail. Then Cooper started chanting, “You can do it, Brockster the Rockstar.” Soon, the whole class joined in. That was the first day Brock started wearing his glasses.

In December, the elementary school had their very first concert of the year. The students did a lot of hand movements for certain songs. With Brock’s significant developmental delays, things like hand movements become quite challenging for him. I watched in amazement as his classmates stopped what they were doing during their live performance to help show Brock how to make the correct movements for the song they were singing. I don’t think I’ve ever cried as much as I have when I saw those 5- and 6-year-olds do that for my child. They didn’t even care that their own performances was on hold. In that moment, all that mattered was not letting their friend be left behind.

In January, Brock started play therapy at school to help with some behavioral issues he was having. A few months later, I met with the therapist to discuss any progress he was having. I learned that during the first few sessions, Brock would hide behind his teacher’s desk in the hopes of avoiding yet another therapy. His friend, Cooper, all on his own, got Brock to go by offering to join him. Cooper attended the first four sessions with Brock.

After the spring concert in May, Brock had a big meltdown in the hallway next to his classroom. The first thing I tried to do was to remove him from the situation, especially since it was in public. He gets embarrassed about his public meltdowns later on after he calms down. When that wasn’t going to happen, I knew I would have to try and help him right there. Imagine my surprise when some of his little friends sat next to me to help Brock calm down. They started saying, “It’s OK, Brockster” and “You’ll be OK.”

Those are just a few instances of some things that happened throughout last school year. Never in my wildest dreams did I think my son would be blessed with friends like that. His classmates didn’t see a child who was different; they saw him as a friend who happened to need extra help and they were more then willing to make sure he got it.

This is the exact reason why raising awareness for special needs is so important. I encourage people to ask me questions because the more aware people are, the less significant these differences become. I’ll be forever grateful for the parents of my son’s classmates for teaching acceptance. And I hope his first-grade year coming up will be just as successful as this past kindergarten year.

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10 Reasons I’m Not ‘Undateable,’ Like This Casting Agent Suggested

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For many, it’s a dream come true to hear from a casting agency inquiring if you’re interested in a role on their TV show. I guess it’s a dream for me, too. In fact, it’s on my God-sized dream board to appear on “The Ellen DeGeneres Show” and to participate on “What Would You Do.”

A couple of months ago, I did receive an inquiry from a casting agency for a reality TV show… but it wasn’t a quite a dream come true.

To sum it up: A man in the U.K. saw my YouTube video and emailed me. He asked if I was still living in the U.K. as he was looking to feature people on a reality TV show: people with “significant medical conditions” who were “looking for love.” When I inquired about the specific name of the show he was casting for, he avoided my question. So I went to Google and did my own research. The casting agency that reached out to me works for two shows with the description he gave me: “Too Ugly for Love?” and “The Undateables.”

I know a few people in the U.K. who enjoy the shows; however, a majority of the people from the U.K. that I’ve connected with are strongly opposed to them. Having limited access to the shows, I only want to focus on the titles. I’m not fond of them. Maybe the show helps educate others about different conditions by raising awareness, but I still don’t like the titles.

There’s a lot I could say about them, but that’s not why I’m writing this. I’d rather focus on the positive. I’d rather tell you why my facial birthmark doesn’t make me too ugly for love or undateable.

1. I have a unique perspective on life. This comes from both my unique appearance and my experiences. I know there’s more than one way to look at a situation. From firsthand experience, I know we shouldn’t judge a book by its cover — or a person by how they look.

2. I know how to laugh. I have to laugh, whether it be at myself or at a situation. I know I can’t take everything too seriously. When someone asks if I painted my face with face paint, or a child asks if I got my birthmark from “eating a hamburger,” I laugh. Life would be too hard and complicated without those moments of laughter. I can’t wait to laugh with a significant other.

3. I’d add a bit of color to a man’s life. (See what I did there?) Not only will the purple hue on my face add in some color, but my life is never boring. There’s always a story to tell.

4. My family is amazing. They’ve never treated me differently because of my facial difference. They still pushed me to do my best; they still tell me I can do anything I put my mind to. They’ve encouraged me to be proud of who I am, as I am. They love and support me.

5. I (typically) have a lot of patience. I get asked a lot of questions and I get stared at often. It usually takes a lot to push me over the edge. Sometimes I have to explain my birthmark and condition 20 times a day; sometimes I don’t have to explain it a single time. Either way, I don’t mind.

6. Life isn’t always easy, and I get that. I’m basically a pro at knowing how to persevere, and I never give up. I may get knocked down on occasion, but I always get back up. The staring and the comments? The medical procedures? My image going viral? All these things have had a part in teaching me to persevere with joy.

7. My heart is compassionate. This goes hand-in-hand with having a unique perspective in life. I know what it’s like to struggle, to go through a hardship — both because of my birthmark and general life experiences. When I see others struggling, my heart breaks.

8. I am one of a kind. Birthmark or not, there’s only one me.

9. When I date or marry, my boyfriend/husband won’t be taken for granted. I get that my birthmark isn’t up every guy’s alley, and that’s OK. Especially when it includes laser treatments every two months, rude comments, and constant stares. I know other people close to me are affected by people’s harsh comments and gawking. Whoever I date/marry will probably have similar experiences themselves. Whoever I marry (if I marry), I know he’s been worth the wait.

10. I’m confident. I know who I am. My birthmark doesn’t define me. I can wear makeup, or I can go without it. I’m more than my physical shell. I’m proud to be me, birthmark and all.

I’m not perfect, and I make mistakes… but I know I’m dateable. I’m beautiful both inside and out. Although I hope to continue to grow and become a better person, I wouldn’t change who I am. My life has been an adventure, and I know my journey has a lot of amazing things on the way.

I know not everyone with a facial birthmark or facial difference will relate to my list. Not everyone has such an awesome family, and not everyone feels confident. But if you’re struggling, I hope you’re encouraged to make your own positive list as to why you’re beautiful and/or dateable — because you are. You are one of a kind. You are valuable. You are a unique and beautiful person worthy of being loved.

You are especially worthy enough to love yourself.

The Beautiful Travelin’ Chick,

Crystal

Follow this journey on The Travelin’ Chick.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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