The Daily Questions, Lessons and Heartbreak of a Special Needs Mom

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When I was young I knew I wanted to be a reporter. I believed in the tenet of giving voice to the voiceless and I wanted to hold leaders and institutions accountable.

Now as a mother, and one to a special needs child, giving voice holds an entirely different meaning. At age 3, my curious, persistent and excitable little boy was diagnosed (separately) with autism spectrum disorder and selective mutism, a severe form of social anxiety that makes him afraid to talk in certain situations.

Over the last year, I have spent countless hours trying to determine which disorder is fueling his communication problems because the symptoms can mimic each other. But, after months of torturing my mind, I am deciding that’s not helpful anymore.

The truth is he probably has both.

I didn’t want to be a part of these clubs. I didn’t want to be around these different and sometimes sad people. When we sat in the developmental pediatrician’s office at the Children’s Hospital of Philadelphia and heard the “A” word, my heart sank. More than that, the anger bubbled up inside of me and I just wanted to prove the expert wrong. But once you finally accept it, no matter how long it takes, I can tell you these aren’t such bad clubs to belong to.

Some of the people you come in contact with, the therapists, coaches, parents, and most likely, the kids, are amazing. These people are the ones who truly understand what a big deal it is when your child says “hello” to another child, when he zippers his own coat and when he asks for something he needs.

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Photo courtesy of photographer Jennifer Stone Rypel

I will always wonder, was it the renovations we were doing while I was pregnant? Did I not eat well enough? Or was it because I broke down and took cold medicine once, maybe twice?

There is the constant questioning.

Do other 4-years-olds have a fascination with plumbing or watching the microwave clock count? Do they wait until automatic doors close completely so they can push the button themselves before walking in? Do they melt down when you make a right at a red light because you are supposed to stop at red lights? Are other kids lashing out at their siblings like mine does?

Then there is everyone else’s voice: He is just shy. He will grow out of it. There is nothing wrong with him.  You just weren’t hard enough on him. Every child moves at his own pace.

Some days are absurd. You call your husband and tell him to come home because you can’t do this anymore. You love your dog more now than ever before, even though you forget to feed her, because the dog may be the only one bearing witness to this crazy life. Some days the sadness seeps in like rain.

Your heart breaks a little each day. When you’re watching other kids hold hands and talk effortlessly with one another. When your child gets bullied and doesn’t stand up for himself. When his brother wants to cuddle with him and he wants nothing to do with it. When you feel the stress on your marriage. Whether you want to admit it or not.

Some days are amazing. I have to tell my son to use his inside voice because he is talking so much, though few would believe it because they don’t see what he’s like at home. And out of the fog, his own voice emerges: “My tongue doesn’t like this kind of milk. Can you read those words, please? I need you to listen to me.”

Then there is the good kind of wondering. What will give him voice? Music? Swimming? Art? Look at how far he’s come from a year ago.

Despite my choice of profession, or any swagger I have conjured in my life, I have never loved confrontation. But there is nothing like having a special needs child that makes you stand up and ask for what you want.

You will learn to say, even to family, “This doesn’t work for us.” You won’t hesitate to ask, “How do we make this better?” You won’t be embarrassed when people get impatient with you and your tantruming child for taking up too much of the sidewalk or taking too long to get out of a parking spot.

When others are going through this, you will be useful in ways you could never imagine. You will share your own gratefulness for those who have walked this path before you.

Most importantly, you will never give up.

You may get tired. You may need a break. But you never give up on your child and your family. Just like your child, you will be brave. And you may learn more than you teach.

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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.

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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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.

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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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