Entering the World of My Child on the Autism Spectrum


One of the worst fears as a parent many of us probably share is how to keep our children safe from harm. We might spend countless hours worrying about sickness, physical/metal/emotional harm, appointments, bullying, school and much more befalling our children. We might run around doing things for our kids, plus cooking, cleaning, grocery shopping and baths — sometimes we might even forget to take time out for us. With the million and one items on our checklist of to do’s and worrying, it is no wonder we might not take time to enjoy the little things.

We lived in Louisiana, in the deep, deep south. Copperheads reared themselves at every opportunity. At one time, the farmers’ bulls escaped ensuring, everyone stayed safe and locked up in our homes until the sheriff let us know the coast was clear. I won’t even get into the alligator farm the bank seized, leaving the alligators to fend for themselves. Needless to say, Louisiana was rich with culture and wildlife, but I worried non-stop about things that could harm my son.

I’ll never forget the day Chris taught me something about the “little things” in life. This was also the day I realized just how much worry I carried. Our two mile driveway was made from rock and stone with a natural pond that overflowed every time it rained. Outside, Chris was jumping in and out of puddles. I found such enjoyment watching him, considering not much amused my 3-year-old. I followed him back and forth, with less than a foot spacing between us. After an hour of this, my nerves were shot. I felt like I said, “Chris, please don’t,” or “Chris, be careful,” so much that if that was a song on the radio, it would have been played out.

At one point, he looked up at me with his big, brown eyes and said, “Ma, drop.” I squinted my eyes, as if that helped clarify what he was saying or helped me to hear better. He again said, “Ma drop,” but this time pointed to the ground. “Oh, you mean jump. Is that what you are trying to say, you want mommy to jump?” He smiled ear to ear and shook his head yes. Here, is where I realized, I was officially an anxious parent. No way, who knows what’s in that water? Knowing my luck, I would jump, cut my foot, bacteria would devour it, have a visit to the hospital, and be off my feet for a week. Yeah, nope. I bent down towards Chris, grabbed his little hands softly, and said, “I’m sorry, buddy, but mommy can’t do it. I don’t even want you to because I don’t want you to get hurt. But, you are having so much fun and mommy wants you to be happy.”

Chris looked down at the ground and his jump didn’t have as much pep. I had never felt so bad as a parent until that day. I bent down again to ask him what was wrong. When Chris was upset, he would get distant or mad. This was one of those times. Just jump you fool! You used to jump off buildings into pools as a kid, but you can’t jump barefoot in a puddle. Wham. I had just hit a brick wall of enlightenment. Here, my son wanted to play and all I could think about was protecting him and myself from unlikely possible harm. He took it as me not wanting to play with him and I…..well, I was being a silly parent.

We played even when the rain came. After baths, dinner and bed, the house fell silent again. In the country, when things are silent, there is almost a loneliness that befalls like a blanket softly falling over you. The term, “you can hear a pin drop,” doesn’t quite describe it. I was left to my thoughts and began rehashing the day in my mind. I imagine all my son wanted me to do was enter his world. I want him to feel accepted and understood. I believe he needed me to jump in those puddles and I hope by doing so he felt all those wonderful things. It was the smallest thing to do, compared to the everyday battles and hurdles. I was happy I entered Chris’s world. I cringed then and still do, thinking I almost didn’t because of all the “possible harm.”

I know how hard it can be to take time to enjoy the little moments. I can have many little and big things in my mind — trying to have my children adjust to certain social norms, how to teach my child this, or all the “don’t, no, wait, in a second.” I am blinded by all those things and don’t stop to try and see it through my child’s eyes. For me, it is important to enter my child’s world. No matter how unusual, off the beaten path or stressful it may seem. Later, I believe my child will be ever thankful for it.

Chris is now 9 years old. Driving in the car I asked him, “Do you feel I understand you?” He shook his head yes. “OK, next question: Do you feel accepted by me?” He shook his head yes, again. Piling out of the car, he gave me a hug. He said, “Mom, you know when I say I hate you, I really don’t. I mean, I’m mad. It’s usually because you tell me “no.” I get it, though.” I teared up then and even now, while writing this. I believe going into his world allowed him to blossom in mine.

As parents I believe it is imperative to enter our children’s world first, before pointing out all the things they need to change or think about. I think of it this way: Could I explain what chocolate ice cream tastes like if I’ve never had it before? So, how could I explain the “ins and outs” of the world to my child if I don’t know how they view it?

Follow this journey at Ronnie’s blog.

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5 Things I've Learned From Disney as an Adult With Disabilities


I’m a Disney girl. I’ve always been a Disney girl. I grew up watching “The Little Mermaid” and “Cinderella.” When asked what I would do if I could do anything for my Make-A-Wish trip, I said meet Mickey Mouse. My best friend and I still go see most of the new Disney movies in the theater. It’s funny because I relate to and appreciate the movies differently as an adult. As a kid, I liked the stories and music. As an adult, they have deeper meanings.

Here are five things Disney has taught me as an adult living with various disabilities:

1. It’s OK to be sad. –“Inside Out”

It might sound silly, but one reason I love “Inside Out” is because it shows me that Sadness is just as important as Joy. I have a tendency to be more like Joy, always looking at the bright side. But as an adult with a disability it can be hard to see your peers do things that you can’t or haven’t done yet. Things related to working, friendships / relationships, and becoming independent from your family. Figuring out this stuff is hard enough when you have a disability or chronic illness. But, when you see your friends and peers doing them “without any trouble” it can be hard. It’s OK to feel sad, scared or frustrated… feeling those emotions is just as important as being happy.


2. Dare to do things that scare you. “Finding Dory”

I love this movie so much. One scene stands out for me, though. It is when Dory wants to go through the pipes to find her parents in quarantine. She’s scared because she was given directions by two crabs but they aren’t able to go with her. “I can’t be somewhere where I have nobody to help me.” I have low vision (totally relate to Destiny) and it can be scary for me to go places by myself. I get nervous in unfamiliar places because I worry about things like going off curbs and down steps in my power wheelchair. But like Dory, sometimes you have to do things that scare you. Be brave. Don’t limit yourself by being too scared to do something on your own (within reason).

3. Never stop dreaming. –1950 animated “Cinderella”

Simple enough. Never stop dreaming and don’t put limits on yourself. If you want to do something, try as hard as you can to make it a reality. I say “try as hard as you can” because I get it. Working towards certain goals when you have a disability can be filled with so many extra considerations and complications. You may not be able to achieve all of your goals, or your goals may change, but the key is to never stop dreaming.

4. Have courage and be kind. –2015 live-action Cinderella

This is one of my favorite sayings now. I even bought a sparkly decal with this saying for my wheelchair. I feel like this has always been part of my personality, but I never really thought about it. Having courage when you have a disability can mean many different things. For me, it has to do with my outlook and how I approach various situations. It’s kind of a combination of everything I’ve described. Understanding that there are going to be tough days, but there are also good days. It takes courage to keep moving forward despite all the obstacles that can go along with a disability.

Being kind is a good idea for anyone, but it can be especially difficult for someone with a disability when faced with certain situations. For example, staring. Instead of getting angry or frustrated, I simply smile. I wave to curious kids. I try to remember that most of the time people are not trying to be mean or rude. I approach these situations as learning opportunities. I want to be friendly and educate them. I’m not perfect though, and have definitely had days when this kind of thing gets really old. I know sometimes you need to speak up and and make your frustration known. But on the whole, having courage and being kind is the way to go.

5. Appreciate both the good and bad times. –“Moana”

I wasn’t sure about “Moana” at first but now I love it. There’s one particular line that stuck out to me after re-watching it a few times. Moana’s grandma tells her “Sometimes the world seems against you / The journey may leave a scar / But scars can heal and reveal / Just where you are…” I like this because it’s so true. I have physical scars from surgeries and IVs. While I can’t really see them (they’re on my feet, behind my knees and on my back) knowing they’re there is enough.

If I really think about it there are also emotional scars. There isn’t a specific incident or event that sticks out. I think it’s more subtle, from a lifetime of having to “fight.” Whether that’s through illnesses, physical therapy, succeeding in school, and now work, it’s just a fact. I have to work harder to do what I want. There are also the effects of feeling left out at times, like I alluded to earlier. It all adds up. The point is to try to appreciate both the good and bad times.

So there you have it, five things Disney has taught me over the last few years. Some may say Disney movies are just for kids, but I disagree. You’re never too old to learn something from them.

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I Am the Face of Disability, Even if I Don't 'Look' Disabled


Occasionally, friends, I get tired. I’m not referring to the fatigue that is common with my diagnoses. I am referring to the kind of mind-draining tiredness that comes from fighting the same battle. I am 32 years old and fully disabled. I have a handicap placard that hangs in my car. I have no shame in either of those facts, because there is absolutely nothing I can do to change my condition. However, I’m growing tired of defending my status based solely on the fact that I don’t look quite sick enough to fit others’ mental picture of disability.

So, I’m saying this now on behalf of myself and the entire disabled community. Every disabled person is the face of disability. Whether or not a person uses a mobility aid does not determine their disabled status. An illness that physically alters appearance is not required for a disability to exist.

 

Sometimes the face of disability is found at the hospital or in a treatment center. Disabled people often have complex medical needs that must be addressed in those types of settings. However, there are other times that the disabled go bowling or to a zoo. Just because a person has physical limitations does not mean they have abandoned all hope of ever having fun again.

Today, my car was parked in handicapped parking. Today, it was necessary that I utilize the aid of my placard, because I could not have completed my task successfully without accessible parking. However, when I returned to my car, I felt embarrassed. A couple in the car next to me stopped and stared. I immediately wondered if I was walking slowly enough to meet their approval. I wondered if they noticed I limp on my right side. My hip has started dislocating again, and it’s making me a bit extra cautious when I bear weight on my right leg.

Then, once I was in the car – still feeling the weight of their gaze as they craned their necks to inspect my disability placard – I felt ridiculous. I do not have to prove my disability to anyone outside the medical community. I did not ask to have a chronic illness. I did not choose to have joints that frequently dislocate. I didn’t special order my aneurysms because I thought they sounded fun. Why am I acting ashamed of something I cannot help?

I’m over it. I am tired of feeling embarrassed about something over which I have no control. I refuse to apologize for not looking “sick enough” for some people. I am the face of disability when I am standing and cheering for my favorite team, and I am the face of disability when I am sitting in the hospital waiting for more tests and procedures.

The encouraging part of this proclamation is that I know I’m not alone. There are so many other faces of disability throughout our world – faces who are sick and exhausted and frustrated. But also, faces who smile and laugh until their sides hurt. Let me encourage you to show your face. The face of disability looks like all of us who were dealt a difficult hand by life and still manage to smile.

If you want, join me in sharing your selfie on Twitter and Instagram with the hashtag #iamthefaceofdisability. The world needs to see us, because staying hidden is too exhausting.

Follow this journey on Crazy Chronic Life.

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Children in Taekwondo.

When My Students Asked How We Should Treat People With Disabilities


When I first became sick five years ago, my favorite sport, basketball, was quickly ripped out of my life. I could no longer play, and as a high school junior, I was looking forward to getting some more varsity time. Yeah, sometimes life does one of its funny little tricks and works out weird.

The sport that fell into its place was taekwondo. I had done it for a few years when I was younger, but I wasn’t very good at it to say the least. When I got super involved with basketball, taekwondo was one of the first sports cut. Like I said, I wasn’t very good.

After losing the ability to walk due to extreme muscle weakness, I was determined to not let my conditions get the best of me. I could barely walk when I started taekwondo. Over the years, I’ve had my ups and downs with my health, but there’s been one constant other than school… taekwondo. I would help out with the classes in addition to my own classes. In the last two years, walking has again become a hardship, so I do my taekwondo from a wheelchair or on my knees. Yeah, you heard me right. I used wheelchair and taekwondo in the same sentence.

Recently, I was teaching a class for 7 to 12-year-old kids and we were having a talk on our life skill of the month, respect. The talk started just as many had started before. “What’s respect?” “Who do we give it to?” “How do we earn it?” We had the kids all engaged and ready to get back to work when one of the students, maybe about 7 or 8 years old, mentioned we should give more respect to people with disabilities. That perked my ears up and I was so shocked, I was speechless. Fortunately, my instructor was on his A-game and came up with the perfect response. It went something like this:

Student: “We should give more respect to people with disabilities.”

Instructor: *pauses* “Everyone take a seat again. Who deserves our respect?”

Kids: “Everyone!”

Instructor: “So let’s say there’s a kid at school who can’t see or a kid on the playground with one arm, their eyes don’t work and that kid can’t climb the same as you. Should you treat them any differently?”

Kids: “No!”

Another kid: “But you should help if they need it.”

Instructor (while nodding): “We are all the same. Help if you can, play together, and talk to them. This is one of the most valuable lessons you can learn, boys and girls. Treat everyone the way you want to be treated. Respect must be earned.”

This response was so spot on, I wish more young people could have heard it. If you teach them young, it sticks better. These kids have a taekwondo instructor in a wheelchair with multiple disabilities who hates excuses and special treatment. As my instructor told me the other day, when I’m teaching, they don’t see the chair anymore; they see the instructor. Of course kids are curious, but they have an example right in front of them. With all my disabilities, I’m still held to high expectations with some minor accommodations, but do I get treated any differently because I’m in a wheelchair? No. Not by the kids. Not by my instructor. Not by my peers. Not my family.

The moral of the story is to teach kids respect and acceptance early so whenever they meet people different from them, disability or not, they know how to act appropriately. It’s never too early to start!

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Thinkstock photo by Microgen.

Born This Way cast with RespectAbility and Brad-Sherman.

Congressman to Discuss Disability Employment on Emmy-Winning TV Show


Lauren Appelbaum is the communications director of RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for people with disabilities.

Rep. Brad Sherman, the 10-term Congressman, is known as a serious legislator. So what is he doing in a reality show made by the same company that created “Keeping up with the Kardashians,” “Rob & Chyna” and “Total Divas?”

The reason is simple: he co-hosted a major event in his district with Emmy-winning reality-TV innovator Jonathan Murray (executive producer of the shows listed above, in addition to “Real World,” “Born This Way,” “Autism the Musical” and others) and former President George W. Bush appointee on disability issues, Steve Tingus.

The event, entitled “Ending Stigmas & Bigotry: Expanding Employment for People with Disabilities,” was presented by Sherman working in partnership with RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for people with disabilities. Both Murray and Tingus are on the board of RespectAbility, whose president, Jennifer Laszlo Mizrahi, and communications director Lauren Appelbaum (author of this article), also are featured in the episode.

Participants in the event included stars from the cast of Emmy-winning reality show “Born This Way,” which features seven diverse young adults with Down syndrome, as well as other individuals with autism, multiple sclerosis, spina bifida, physical disabilities, amputations and non-visible disabilities. Local experts including Cathy GottElaine HallSandra McElwee and others also participated. Together, participants brainstormed new ideas to move the needle forward on the employment of people with disabilities in a shared agenda. The congressman facilitated these discussions.

“Today in California, 115,600 youths with disabilities, between the ages of 16 and 20, are preparing to enter the labor market,” Sherman said. “They have high expectations and deserve the opportunity to achieve the American Dream. Young people with disabilities may simply need some thoughtful help to transition into the workforce. People who are blind, deaf or nonverbal frequently use assistive technology. Similarly, people with developmental disabilities can benefit greatly from internship opportunities and job coaches. Comcast, Ernst & Young LLC, Lockheed Martin, Sprint and other companies have seen that people with disabilities can be extremely capable and loyal workers.”

“Born This Way” is a breakthrough show on diversity and changing the disability lens from a “hand out” to a “hand up.”

Megan Bomgaars runs her own successful company, Megology, and Sean McElwee just started his own company as well called Seanese. John Tucker is a rapper, and his YouTube video has been watched more than 150,000 times. All of the stars have Down syndrome. When the show was recognized with an Emmy for outstanding unstructured reality program, three of its stars became the first people of color with disabilities to win an Emmy.

Steven Clark says that having a successful career is key to becoming independent for himself.

“I get to have more freedom,” Clark said. “I get to be more adult-oriented. I can finally relate to everyone else in the world who gets up early in the morning for a job.”

Promoting success stories of people with disabilities in shows like “Speechless” and “Born This Way” helps to change negative perceptions of people with disabilities.

“Each year 300,000 young people with disabilities reach the age to enter the workforce,” Mizrahi said. “However, despite polls showing that most of these young people want to work, they often hit a roadblock because of negative stigmas. So it is wonderful that viewers of ‘Born This Way’ will see young adults collaborating with a member of Congress to expand opportunities for employment and starting their own businesses.”

The episode will air on Tuesday, June 6 at 10 PM ET on A&E Network.

Key Facts:

  • Only one-in-three working-age people with disabilities have a job and people with disabilities are the poorest of the poor.
  • Some of the most talented people – from scientist Stephen Hawking to finance wizard Arthur Young – are, or were, people with disabilities. Hawking uses an electronic mobility device. Young, the co-founder of Ernst and Young (EY) was deaf and was a wiz at both math and finance. Today EY employs more than 150,000 people globally, and is known to be a leading expert in engaging talent with disabilities.
  • The Israeli military recruits people with autism for their elite unit 9900 because they find them exceptionally good at computer and pattern recognition skills.
  • Today Comcast has a service where you can talk to your TV remote control to find the shows and channels you want to watch. It was invented by Tom Wlodkowski, Comcast’s vice president of accessibility, an engineer who is blind.
  • In recent years Apple, Microsoft, Google and others have created breakthroughs in technology that use innovations to enable people with a wide range of disabilities to succeed in school and the workplace. This includes the fact that computers can now read out loud to people who are blind and YouTube can automatically add captions to videos for free so that people who are hearing-impaired can follow them.
  • Studies show that most people with disabilities want to work.  The Harvard Business Review, Fast Company, Wired and other publications have extolled the “disability-advantage” to companies that hire talent that includes people with disabilities.
  • People with disabilities are the largest minority in America, with almost one-in-five Americans having a disability. However, according to GLAAD, fewer than two percent of scripted television characters (15) have disabilities in 2016. The stars of “Born This Way” are the first-ever people with disabilities of color to ever be recognized with an Emmy.

Learn more at RespectAbility.

Blue scooter against yellow wall.

4 Reasons a Mobility Scooter Means Freedom


My grandpa was not yet 1 year old when he got poliomyelitis. Polio for short. It was around 1950, and the vaccine would come out soon after that. He used crutches for most of his life, but when he had a heart attack in 2007, it was time to consider a mobility scooter. Manual wheelchairs were not practical. He couldn’t go everywhere in them. And crutches were too hard on his body.

You see, polio is about more than paralysis. It attacks the central nervous system, spreading to the brain and the spinal cord. The virus destroys nerve cells and the muscles cannot be used anymore. In my grandpa’s case, it stunted the growth of one leg and made it so he could not use his other leg at all. After open-heart surgery, my grandpa had to consider getting a mobility scooter after using crutches for decades.

When I thought of my grandpa, I never thought of his crutches. When I think of him now, I never think of his mobility scooter. It’s like when someone always wears the same shoes. You don’t need to look at their feet anymore. You know they are wearing the shoes, but it’s not important.

My aunt likes to tell the story of when she was a kid and someone asked, “What happened to your dad?”

She gasped, “What?”

But when she looked at him, her dad was fine. There he was, standing with his crutches. This is how he always was, had always been. Nothing had happened. His crutches were just as much a part of him as his limbs were. Every picture of him drawn by his daughters included his crutches. In every picture of him by his granddaughters, he is drawn with his mobility scooter.

My grandpa’s crutches gave him the freedom to be there for every part of his daughters’ lives. His mobility scooter now gives him the freedom to be there for every part of his grandchildren’s lives. Every day he wakes up and goes to work by himself using his mobility scooter. In the parking lot of his apartment complex, he presses a button and a ramp comes down, enabling him to drive up into his van and park next to the driver’s seat. Then he pulls himself into the driver’s seat and goes to work. He lives by himself and works a full-time job, and he would not have been able to do this without his mobility scooter. Whether you have a rare disease like my grandpa, or you have another physical disability, a mobility scooter can give you your freedom back.

Here are four reasons why: 

Flexibility: Unlike a wheelchair, a mobility scooter has a seat that can swivel. This means you don’t need to crane your neck or turn your entire wheelchair around to look behind you. And there’s more space for your legs. It’s much less cramped than a wheelchair. At the end of the day, a mobility scooter can fold up, saving space and ensuring easy transportation.

Ease: A mobility scooter is easier on your upper body than crutches or a manual wheelchair. They can strain the shoulders and hurt the arms. The padded seat is upright, supporting your back. Going up inclines is a lot easier, too. There isn’t the risk of falling if you are using a cane or crutches, or losing control of a manual wheelchair and rolling backward. You can also travel a much longer distance.

Speed: A mobility scooter can go four to eight miles per hour. This saves you time and energy. You can keep up with your friends and family at the mall without wearing yourself out. And you don’t even need a driving permit.

Independence: Having a mobility scooter can help give you your independence back, enabling you to get to work and go into the community. Keeping your independence helps combat depression. Depression is common in those with a physical disability, especially older adults, because of isolation. Having a mobility scooter makes it much easier to leave the house and continue spending time with others.

You can get your freedom back just like my grandpa has. With a mobility scooter, you don’t need to slow down. You don’t need to miss an event or special occasion because of your disability. The convenience of a rechargeable battery, a comfortable seat that swivels, and not having to strain the upper body has helped my grandpa maintain the quality of his life.

If you have a physical disability, how do you maintain the quality of your life? Do you think mobility scooters are a good choice, or do you prefer something else?

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