The One Change We Made So He Would Never Feel ‘Less Than’

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Before we become parents, we already have expectations about our children’s lives. For most of us, they are unintentional, but they are there and come from, I believe, our own life experiences.

I didn’t recognize this in myself until I had my first child. I didn’t consciously pre-plan his life, I just figured he’d follow a similar path to mine or my husband’s. Both of us were honor roll students, participated in school and community activities, socialized with our peers and took on leadership roles when given the opportunity.

Jonathan was diagnosed with Asperger’s syndrome and though extremely bright, he struggled with schoolwork, and conventional teaching methods were not effective for his style of learning. He loved structure, rules and clear, concise directions but not in the confines of a traditional learning environment. His mind was rich with creativity and he adored imaginary play but preferred it as a solitary activity over interacting with other children.

It became very clear he was never going to follow in our footsteps. There wasn’t much written or known about Asperger’s when he was growing up, so we had to rely on our instincts and focusing in on what would be best for him when it came to making decisions about recommended therapies and educational interventions.

But first and foremost, we had to give up our expectations… to free him from feeling as though he was “less-than” because he couldn’t be who he thought we wanted him to be. It was so liberating to let go and not worry so much about his future life but stay focused on the here and now. So, for example, college was out of the question unless we found the right school and teaching methods to tap into his brilliance. It wasn’t easy, but we did it, and he did go to college. And his college experience was not typical either… yet he graduated with honors.

As his mother, I know I’m important to him and he loves me. I don’t “expect” him to remember my birthday, ask me about what I’m interested in, sing my praises, or think of me at all really. The Asperger mind is extremely busy and too hyper-focused to think of such social “trivialities,” so I’m not offended or hurt nor do I play the martyr over his unintended neglect. When he does notice me, or he says, “Hey, Mom, you look nice,” I’m overwhelmed with emotion and gratitude.

What most see as “small” victories, we consider big celebration time in our family. Molly will run down the stairs to exclaim that her brother immediately responded to her text! I’ll do a happy dance when I call to remind him of an important to-do, only to be told, “I already did it.” We marvel at his ability to remember every single detail in a book he’s read or a movie he’s seen… even if that was years ago.

No, we don’t spend time thinking about what could have been because that doesn’t really exist. Those thoughts come from a place of expectations. We choose to feel the joy in the unexpected, the glory in the seemingly mundane moments, and an appreciation for our son’s unique talents and capabilities even though they are so very different from ours.

Yes, my son taught me the blessings of no expectations… and to delight, cherish and celebrate the journey of our lives.

This post originally appeared on Geek Club Books.

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The Sweet Moment This NBA Star Made a Young Fan’s Day

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Mark Gasol, an NBA player, was on his way to the locker room after a game when someone in the crowd caught his eye.

The center for the Memphis Grizzlies recognized a boy with special needs in the audience and took a moment to say hello, The Daily Mail reported. Gasol talked with the boy for a moment before giving him a high-five, which resulted in one of the most adorable moments of all time. The young fan squeezed his Grizzlies T-shirt to his chest, beaming as Gasol walked away.

The boy is a well-known fan amongst the Grizzlies. Last year, Zach Randolph, another player on the team, spent a moment with him on the sidelines after the he tried to get Randolph’s attention. Randolph gave the fan his warm-up shirt.

Watch the entire encounter in the video below, but keep an eye out for an especially sweet moment at 0:13.

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Why I Love When People Underestimate Him Because of the Way He Walks

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This is the story of my husband, Harvey Dawkins. Harvey was born with cerebral palsy, but his mom never saw him as being disabled, so around the age of 3, she did what most parents of able-bodied children do: she bought him a tricycle.

This is where Harvey’s story really begins. He soon discovered that it was far easier for him to ride then walk. It was then that a bike became a lifelong part of Harvey’s world.

When he was a teenager, he decided one day to “run away,” so he got on his bike and rode from Bensalem to South Philadelphia, which was about a 60-mile ride. It was then that his love of long-distance or endurance riding came to be.

When he got older, he found that he could combine his love of cycling with his desire to help others.

His first opportunity came with a charity ride to raise money for a paraplegic young man. After that event, friends and coworkers persuaded him to do the MS 150 City to Shore ride in honor of a coworker with multiple sclerosis.

Since that time, Harvey has competed in nine of those rides, as well as adding MS rides in five other states. It is his goal to ride in the MS 150 rides in all 50 states. In addition to doing his charity rides, he has also taken up triathlons, which consists of swimming 400 yrds, biking 16 miles, and doing a 5K run.

I’m amazed at the amount of people who underestimate him solely based on the way he walks. I love when a group of cyclists who don’t know him kind of mock what he might be able to do on a bike, that only lasts until they see him ride. Harvey is a truly amazing individual with a huge heart.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post [email protected]  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Watch This 8-Year-Old’s Emotional Return to Dance After Life-Altering Accident

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Alissa Sizemore, 7 at the time, was playing in her neighborhood in Naples, Utah on May 6, 2014, when she ran into the street and was hit by a UPS truck, Desert News reported. The truck’s right tire came to a stop on Alissa’s right foot.

Fast forward a year and Alissa has not only readjusted to standing and walking on her new prosthetic leg — she is dancing.

In her first solo performance since the accident, she danced to “Try” by Colbie Caillat, a song she and her mother felt represented everything she’d been through in the past year. Halfway through, Alissa removed her prosthetic and continued dancing.

By the end of the three-minute performance in the Vernal High School gymnasium, the teary-eyed audience gave her a standing ovation, People reported.

Watch the moving performance here:

 

I just didn’t want to give up,” Alissa told the outlet. “Dancing has been my favorite thing since I was 4. I don’t have part of my leg, but I can’t let that stop me. I still want to dance.”

Last week, a powerful music video was released featuring Alissa’s dancing. The video is for trio musical group Gentri’s song “Dare.” In the inspiring video she again dances with and without her prosthetic leg. The lyrics and tone of the song reflect the young girl’s strength and resilience.

Watch the music video below:

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When My Son Asked, ‘Mommy, Do I Have Asperger’s?’

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I’ll never forget the day my son came out from his bath, wrapped in his Sesame Street towel, and asked, “Mommy, do I have Asperger’s?”

I was immediately filled with shock and relief. My husband wasn’t home and I knew this was a conversation we needed to have with him together. I scrambled for my words.  Knowing he was not going to stop asking until he got an answer, I still tried to prolong a response.

“Well, sweetie, I think we should wait for Dad,” I replied.

“But, Mom, I want to know what you think,” he said.

How could I look at him and not respond? This was during the time when we were still getting various diagnosis and weren’t 100 percent sure what was going on. I answered the best way I could.

“Honey, I really don’t know. How would it make you feel if you did?” I asked.

“Well, I would feel cool because my friend Roger* has it, and he’s cool. But I’d also feel sad that I would always be scared of things.”

My heart just about broke and at the same time was filled with love and gratitude that I had a child who could so beautifully express himself.

The conversations we were now able to have were so amazing. My husband and I have always been honest telling him that, like everyone, he has things to work on; that he has an amazing brain; and that we will never stop trying to get him the help and understanding he deserves. But now we were able to really dive into this with him, sharing our thoughts and getting a clearer picture of his.

Previously, I had struggled with what to tell him, and how to tell him. I felt like I was betraying him, lying to him. How could I tell him anything when even the doctors still had different opinions?

My son really wanted answers. His self-esteem was not great, a lot of “I’m stupid,” and the one that really kills me, “What’s wrong with my brain?” We told him there was nothing wrong with his brain and that he had many of the characteristics of Asperger’s, but we were still trying to get more answers.

Eventually we had enough information and we were able to tell him that he did in fact have Asperger’s. Not too long after, he was proudly telling people, “I’m on the autism spectrum; I have Asperger’s.” My boy had the answers he deserved. His self-acceptance inspired and continues to inspire me.

This post originally appeared on What Will This Day Bring?

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post [email protected]  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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7 Tips for People With Special Needs Looking for a Job

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Embarking on a career search can be daunting, particularly if you’re a job applicant with special needs. Having a physical or intellectual disability can make tasks like developing a resume, filling out an application and preparing for an interview exceedingly difficult without support, and children with special needs don’t always have the same opportunities to develop job skills as do their typically-developing counterparts.

We wanted to learn what would help people with special needs find jobs more easily, so we reached out to some programs that specialize in assisting people with special needs find employment. The Mighty spoke with Keri Castaneda, Chief Program Officer of AbilityFirst, a program that offers a variety of services for people with varying intellectual and physical abilities in Pasadena, California. We also talked with Sarah Duplessis, the Program Director for Food for Good Thought in Columbus, Ohio. Food for Good Thought provides job training and support for people with autism and offers supported employment at its gluten-free bakery.

We asked Castaneda and Duplessis what they each wish people knew before beginning a job search or working with a job placement program. Here is what they had to say:

1. Parents, start preparing with your children early.

“It’s never too early to start preparing a teen for adulthood,” Castaneda told The Mighty. “This includes things like building communication and socializing skills and helping the child become independent and do things for his or herself.”

Early preparation also includes inspiring your son or daughter about what they want to be early in life. “A lot of times kids with disabilities are never asked what they want to be when they grow up,” Castaneda told The Mighty. “For so many of the people we serve, that has never even been brought up.”

2. Learn about services offered within your school district, community, county and state. 

Both AbilityFirst and Food for Good Thought are funded through state and federally-funded agencies like the Department of Rehabilitation and Medicaid. Castaneda and Duplessis each suggest that people with disabilities who are looking for jobs should look into other programs in their communities for financial support and other services.

“The more funding a person has, the more support we can provide,” Castaneda told The Mighty. “It’s important to understand what resources are out there in your school district and community. A lot of people take for granted that those resources are available.”

“A lot of parents come to us and don’t even know what’s out there,” Duplessis told The Mighty. “Options like the Bureau of Vocational Rehabilitation in Ohio are available in all states — you just have to know how to apply for services. Look into state and county board funding. Sometimes you can even get transportation to and from work.”

3. Don’t know what you want to do? Employment services can help.

“If someone comes to us who has never worked before, they go through an assessment period where we try and work with them on what they’re interested in, what their ability levels are and what kind of support networks they have. This is before we begin looking into job options,” Castaneda told The Mighty. “One of the things we consistently offer is moral support. It’s something a lot of people take for granted.

“Our first step when working with people who have never had jobs is a career exploration phase. Our clients take an interest inventory test and work with a job developer to come up with three to four careers or professions to explore,” Duplessis told The Mighty. “Then we find companies that are willing to talk to our clients about those tracks, and they go to informational interviews. Job seekers goes with list of questions that like, ‘What is your day like? What is the best part about your job? What is the worst part of your day?’ From there, they narrow down what it is they do or do not want to do.”

4. Job services don’t necessarily have agreements with employers to fill certain amount of spots.

“This is a common misconception people have about agencies like ours,” Duplessis told The Mighty. “We don’t have jobs lined up for people. Every case is its own case — every client has his or her individual job goal.”

“Another reason we don’t have jobs waiting for people is because we want to teach our clients the entire process,” she added. “We want them to leave with a resume so they can update it down the line and do it on their own. The interviewing skills they develop with us will stay with them as well. If they’re looking for a career change a year or two down the line, they’ll have those skills built in.”

5. There are programs that offer supported employment.

“It’s important to try and get people with disabilities active in the community, but sometimes people need ongoing support. For those people, supported employment is the way to go,” Duplessis told The Mighty. “Supported employment means consistent everyday support. Right now, we have 10 supported employees with a couple job coaches who are there with them every minute of every shift. These employees are independent, but the coaches help them continue to grow. Some stay in supported employment indefinitely; others look to eventually move on to more independent employment.”

6. Finding a job takes time.

“Many parents think their child will get a job within two weeks of working with us, and that’s not how it works. The process can take anywhere from one to six months,” Duplessis told The Mighty. “If one of our clients has never had a job before, we want to make sure he or she is developing the skills to find a job before we match him or her with employment. This can take time. We don’t set anyone up to fail, so having faith in an organization like ours is important.”

7. Some services will continue to support you after you’ve gotten a job.

“Once a client gets the job, depending on the type of funding he or she has, we can offer on-the-job coaching,” Castaneda told The Mighty. “We interface with employer — we’re not taking over the position of the employer, we’re just offering support. If, for example, there’s a new task someone has to learn or a new job duty, we can work with the employer on how to best work with that individual to master that skill.”

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