When I Saw the Power of the Bond Between My Son With Autism and His Dad

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Here’s to the autism dads!

There is a great community of autism moms out there, but today I want to focus on the less-celebrated, but no-less-important, autism dad.

Our fantastic autism dad is named Sean. I call him “Dreamboat.” Yes, even to his face.

When our 15-year-old son was first diagnosed with autism at age 2, we were hit with a whirlwind of new terms, therapies and paperwork. We were both devastated by the diagnosis, but we jumped in head first regardless.

While my focus was on getting our son from therapy to therapy, Sean took over the paperwork. He knew I couldn’t handle both, and he also knew that for my own well-being, I needed to be with the boys as much as I could. So he took on the less desirable task of completing all the necessary paperwork so that our son, TJ, could take advantage of every service available to us. No questions asked.

We were a team from the word go.

Later, as we sat nervously in the audience waiting to see if our son would sing on stage with his second grade class or not, it was the calm of the autism dad that made everything OK. He reminded me that if I showed TJ I was nervous, he would feed off of that and become nervous himself. He kept me calm.

When Sean can see that I am tired or overwhelmed, he sends me off for a pedicure or an afternoon at a spa. He knows how exhausting it is being an autism mom, and he wants me to feel cared for and pampered. We couldn’t do it a lot with our crazy schedule, but one way or another, Sean would find a way to allow me to recharge my battery. Even if it was a simple card to let me know how much he appreciated my hard work, he was always thinking of me.

Sean is just the best father to our boys. Every now and then, Sean would declare “Boys’ night!” and the three of them would head out for burgers or pizza, and maybe a movie or some bowling. Sean wants them both to know that no matter how busy he gets, or how much he has to travel for work, he will always make time for them and they can always count on him.

While watching TJ graduate from eighth grade last year, as we all stood to welcome the class in their procession, Sean didn’t try to hide the tear in his eye as he applauded TJ walking by us.

With a little glance and sideways grin, TJ saw his father. And that moment between them alone, everything else aside, sums up the power of the relationship between the two of them.

It’s different than my relationship with TJ, but it is equally (and many times, more so) important. As a growing boy, knowing that TJ has Sean to lean on and learn from makes my heart feel peaceful and full.

For these reasons, and for so many more, I celebrate you, Sean, and all the autism dads out there who give so much of themselves to their kids every day.

Happy Father’s Day, my dear Dreamboat.

The Mighty is asking the following: What’s a dating story related to your disability and/or disease that made you laugh, roll your eyes, cry or was otherwise unforgettable? 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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Why Travelers With Disabilities Need to Reclaim Their Voice

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Too often, people with disabilities are invisible to us. It’s not that we ignore their existence, but that they’re just not out with us in public. We can’t see what’s not there.

But these people do exist, and in larger numbers than you might believe. In a 2010 report, the United States Census Bureau estimated there are 3.3 million people age 15 and older who must use a wheelchair to get around. Another 10 million Americans use a cane, crutches or walker.

This suggests that in 2010, one in every 23 Americans used a mobility aid to walk (or roll). Did you notice that ratio while you were out at a restaurant? At a baseball game? On vacation? Probably not.

Of the people with disabilities you noticed in public, most were probably not on vacation or far away from home. The world can be a very intimidating place for a person with a disability, and a vacation means traveling to a city or country they do not know. For a person who uses a wheelchair, the idea of traveling beyond one’s hometown might seem impossible.

I’ve always loved to travel, but after a car accident left me using a wheelchair, it seemed like I would never travel again. How could I get a 200-pound wheelchair on a plane? In a taxi? Even down the street in a foreign country? There were so many questions, but so few answers. When I finally did begin traveling again, slightly more than a year after my car accident, I felt both at home and out of place.

Where does a person with a disability go for information on wheelchair accessible travel? Surprisingly, much of the information available on the Internet concerning our niche of the travel world has been written by people who are free of any disability. It is nice that a space has been carved out for us, but can we trust the information we are given? The answer is sometimes, unfortunately, no.

So I started to take risks, and visited cities and countries with incomplete information about accessibility. This actually left me with many options lack of information about accessibility is the norm. I had to deal with challenges, setbacks and disappointments. But I learned.

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For example, my recent trip to Moscow was a risk. The websites and news articles I had read before provided little hope that I would make it out of the airport. The articles told me that Moscow would be inaccessible, with few, if any, provisions for people in wheelchairs. 

The top results for a search of “wheelchair accessible Moscow” on Google are each more than two years old, and most are not written by people with disabilities. I have long been vocal about the fact that the majority of online accessibility commentary or travel guides receive little to no input from people with disabilities. A person who spends their life moving about in a wheelchair has an intuition that cannot be replicated. People with disabilities know how to overcome accessibility challenges, because they have to. It becomes a way of life.

One article attacked the public transportation system for being unaccessible, but failed to mention the close to fully accessible city bus system in her attack on the city’s accessibility. It was also clear that since the articles were written, the situation in Moscow has dramatically improved. Curb cuts are now present at the vast majority of intersections. More buildings have been opened up to wheelchair users with ramps or lowered entry thresholds. People with disabilities who have a desire to visit Moscow are more than prepared to overcome the minor challenges that await, and shouldn’t be deterred by inaccurate information online.

As I compared what I saw in Moscow to what was written about it, I realized how important “WheelchairTravel.org will be for the disabled community. “WheelchairTravel.org” is a project I started to give travel information to travelers with disabilities. It is a product of my intense love of travel and passionate desire to share the world with others. It seeks to answer the “how” questions I once had, and shows people with disabilities and wheelchair users that traveling with a disability is far from impossible. It is time we have a voice that comes from within. We must reclaim our right to speak for ourselves and offer our own perspectives of traveling.

Together, we can work toward opening the world to a group of people who are too often forgotten. Roll on!

A version of this post originally appeared on WheelchairTravel.org.

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Meet Kelly Porter, One of Our Mighty Special Needs Teachers of the Year

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Kelly Porter is a 53-year-old teacher from Florida. She graduated from Florida State University in 1985 and has three children of her own. Porter has been teaching at Grace Episcopal Day School in Orange Park, Florida, for the past 10 years and currently teaches fourth grade. Her classroom has children of all abilities, “a cross section of everyday kids,” she told The Mighty in an interview.

This school year, The Mighty asked its readers to nominate a special needs teacher who made a difference in their or their loved one’s life. To nominate, they submitted an essay to us. Our staff then picked five teachers, and Porter made the cut. So we reached out to her to learn more about what makes her so Mighty.

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Describe the moment you knew you wanted to be a special needs educator.

A guidance counselor suggested it to me, and it was an instant click — “this is what I was meant to do with me life.” It was my third year in college. I was a music major in college but didn’t have the passion others had for it, but music therapy was right there on the horizon. It gave me a chance to reach people with special needs through music. I have a piano in my classroom and use it now and again for science.

What advice would you give to someone just starting out as a special needs teacher?

I read this somewhere at the beginning of the year: ask parents what their goals are so you can revisit that conversation later in the year. Set goals and open communication between parents.

If you had a $1,000 grant for your classroom, what would you buy?

I feel children learn so much through exploration, hands-on manipulative exploration. The joke is teaching is just a hobby, we spend all the money we make on getting things for the school. That’s because they’re so important for the children. If I had $1,000 I would buy science equipment and new math manipulatives to really make it come alive for the students.

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What can parents of children with special needs do to ensure their child gets the most out of school?

Give the child full-on attention, be curious with them, hear them out even when they’re going on and on, look them in the eye, hear what they have to say and give it validation. Question them further if you don’t understand what they’re saying, allow them to be involved in the process – engage them in the process of learning. And you need to give your child time.

What’s your favorite thing to teach your students?

Definitely science and a close runner up is math. Science lends itself to hands-on activities. You kind of find out what ignites that particular age group. [My current students] are all about making things blow up or making things smell bad — gross science.

How do you motivate a reluctant learner?

Sometimes you miss out on a lot of the things a child has to offer. It’s important to look for those nuggets. “What does he need today? Where can he be of value to another child?” Plug each child in and show them they are of value.

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What’s the most rewarding part of your job?

I just love children, so the most rewarding part of my job, truly, is being with children every day. There’s a myriad of answers within that: they make me laugh, they make me smile, they’re resilient, they’re wide-eyed with curiosity. What’s not to love?

What aspects of your work often go unnoticed?

I think what might not get noticed perhaps by some parents, is when I’m pushing a child really hard and the child complains. Everything I do is to bring this child up either in an education area of excellence or a character area of excellence; it’s always done out of love.

Has there been an influential teacher in your life?

My high school anatomy and physiology teach, Mr. Maida — he taught all students equally. He took me aside one time to let me know he believed in me. I’d never had a teacher do that before. He didn’t have to do that, but he took the time to let me know, and it really did pay big dividends in my life.

What role do teachers play in children’s lives?

The teacher is a coach. The teacher is coaching a student in life in different areas, in character or education.

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Anything you’d like to add?

The blessing is if you have time to work with the child; their abilities may be where you’re not looking.

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To the Dad Whose Guidance Helps Me Raise My Sons With Autism

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Sunday is Father’s Day. I’ve just moved across the country with my two autistic children who are beautiful, amazing and completely out sorts.

My father, my blood father, is not part of my life. He doesn’t want to be. That’s OK, though, because I have a father.

My father-in-law is a wonderful man. A man who walked into my life when my father walked out. His son, my husband, is an amazing man. I love him dearly. I want it to be clear I wish my husband a happy, happy Father’s Day and I love him. He is an amazing daddy.

This, however, goes out to my father-in-law. The dad who chose to love me.

Dad isn’t a man of words. He is a man who acts. You know the type who loves his children resiliently, and it’s just understood because he is good to them. He’s their friend. He listens.

Dad was the math teacher at our high school, so as you can imagine, he has a practical mind. When I talked to Dad about my boys’ autism diagnoses, he didn’t blink an eye. I know it was a surprise to him. No one thinks their grandkids are going to have a disability, but he has accepted them just as they are. When you’re a special needs family, you know what that means. Everywhere you turn there might be judgment, disapproval, “cures” and ideas about discipline. He and my mother-in-law have always just accepted them as they are.

My father-in-law has taught me many things that have helped me raise my two perfect boys who have autism.

These are some of the things he’s taught me. I hope his guidance will reassure those who never had the honor of a true father.

Breathe: You were given these children; you can handle it. They fit perfectly into your family.

Have a smile for your child no matter how frustrated you are. It’s your job to teach your children grace.

Pull your wisdom from who parented before you, but don’t let them tell you how to raise your children. They are yours.

Never, ever, ever let your frustration become an attack on your children. They have soft spirits.

Always have faith.

Apologize to your children when you are wrong, or they will never learn to apologize.

Sometimes an open heart means a broken heart. This applies to your children, too. But every moment is worth it.

You never regret love. That’s why we are here, to love others.

You must have someone you can be accountable to. Someone who will love you, support you and help you get on the right road.

Your past mistakes don’t have to be your future. You just have to get passed the past.

Dad, I am still a work in progress, but thank you.

Much like on the hardest days with my boys, when you met me, I was lost. You helped me by simply telling me I was enough. Plenty of people loved me; I believe God loved me, and I could love me. I remember the grace you have, and I know I’m blessed and I can do this.

I hope I am half the parent you didn’t have to be.

Happy Father’s Day,

Jo

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. 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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10 Things I’d Like People to Know About Living With a Chronic Illness

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I’m 17, going into my senior year of high school and I have mitochondrial disease. I am dependent upon feeding tubes, IV nutrition and countless medications to keep my body working every day. I need plenty of help just to get through the day, and it’s definitely not easy at all! Thankfully, I have a wonderful support system. Despite all of this, I try and live past my illness every day and continue to try and do the things I love even though my disease has taken a lot away from me. Here are the things I’d like you to understand about living with a chronic illness.

1. People always say, “You are too young to be in that much pain.” Chronic illnesses don’t discriminate. It doesn’t matter your what your age, race or gender is. It doesn’t matter where you live. All children, adolescents, young adults, adults and the elderly are at a risk of developing and managing a chronic illness.

2. “But you look perfectly fine.” That’s the problem, we aren’t “just fine.” Our disease is invisible to the naked eye, but if you turned our bodies inside out, you’d see the real damage our disease has caused us. The reason people with chronic illnesses look fine is because their illnesses can be invisible, so that’s why they’re also known as invisible illnesses.

3. We don’t cancel plans on purpose or because we don’t want to hang out with you. Trust me! We would do anything to be normal and just hang out with friends, but sometimes we are too sick to even get out of bed. Please understand we don’t mean to cancel at the last minute, but this disease effects us daily and how we feel changes daily. One day we’re able to go out to a movie with friends and then the next we’re lying in a hospital bed.

4. Lying in bed all day is not a luxury. Netflix and the Internet can only entertain you so much. After a few hours, you start to get bored and want to experience a typical life. One other thing: Don’t wish you were us and say you want to live like we do because it’s definitely not glamorous. Many of us would much rather be working or hanging out with friends.

5. “It’s all in your head.” This is a common saying a lot of people with chronic illnesses have heard. It’s not psychological. It’s real and causes very severe physical effects to the body.

6. Don’t pity us. We can do most everything you can do. We just have some extra challenges in the way. It may take some extra time, but we’ll get there eventually. Try not to focus on the “I can’t” and look at what an amazing person we really are. We get enough pity from random strangers, so we don’t need it from friends and family.

7. If you don’t know about our disease, just ask. We’ll be more than happy to explain it to you so you can understand more about our condition. Information found online may not be entirely accurate or related to the specific diagnosis we have. Never assume that you know it all when more than likely you don’t. So please don’t come up to us saying you’ve found our miracle cure because more than likely you haven’t.

8. Most importantly, we’re not lazy. People with chronic illness might also deal with chronic fatigue, and that just wears us out. Imagine if you were fighting a battle against your own body. Your body has to do both parts of the fighting here! Can you imagine how much energy that takes? We try to keep caught up with work and school and not stay in bed and sleep all the time, but it does get hard.

9. “If only you would exercise more.” I’ve heard this one too many times before. Your physical strength does play a role in chronic illnesses, but, trust me, we try to keep pushing through and do as much as we can. However, our disease can limit the amount of energy and strength we have so this makes exercising difficult. There are some chronic illnesses which require the patient to not exercise at all. The patient’s physician will be able to tell whether exercise would be beneficial.

10. “If only you were more positive, then you would feel better.” People with chronic illnesses are some of the bravest and happiest people I’ve ever met. They love life for what it is because they all know life is short and you don’t get an extra chance. It’s hard to be positive every day when nothing ever seems to be going right and you’re in so much pain. Everyone is entitled to feel negatively every once in a while.

Michaela Shelley the mighty

A version of this post originally appeared on It’s Not as Easy as You Think.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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I Can’t See My Reflection. But Thanks to My Son, I Know I’m Beautiful.

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I’m a vampire. I can’t see my own reflection. In fact, I haven’t been able to see it since I was diagnosed with retinitis pigmentosa (RP) in 2008. My son, Asher, has no memory of me with vision. He has always accepted me the way I am. But I haven’t.

One of the toughest things to come to terms with when dealing with RP is the gradual decline in your ability to clearly focus on and define objects. I have struggled with my sight loss, and oftentimes caught myself wishing I could just do some simple tasks again like quickly glancing into a mirror with my own eyes to confirm that my outfit, make-up and hair all appear the way I envision them.

I have learned many adaptive techniques to confidently make myself presentable every day without assistance. But the one thing that has nagged at me is wondering exactly how I look now. I can picture my fashion choices, but I have difficulty comprehending my actual facial structure and physique. Do I still look as becoming as I did the day I first got married or even the day my son was born? My appearance is out of my sight, but it’s most certainly not out of my mind.

Coping with this reality lead me to also doubt my beauty. So for the past year, I’ve made a conscious effort to do some deep soul searching. My search came to a pleasant yet unexpected end one evening during bath time.

While rinsing the suds off my sweet little boy, Asher simply said, “Mom, you should wear that pretty dress again.”

“Which one? I have several pretty dresses?” I asked curiously.

“The one in the picture when you and Daddy got married,” Asher explained.

Then it donned on me that my husband and I had recently gotten a special wedding photo framed, commemorating our 15th wedding anniversary. It was a new addition to our living room. Still, I didn’t realize that Asher had been taking much notice of it.

“What made you think of that?” I asked.

“Because, Mommy,” he replied with the upmost sincerity, “because you’re so beautiful.”

In that instant, my son demonstrated his whole-hearted acceptance for who and how I am.

Through his simple words, I understood that when he looks at me, he sees a loving, caring, giving and capable parent. In short, he sees his mom, not his blind mom. That’s true beauty!

Ever since that memorable conversation, I recognize that my child is a far more accurate reflection of my soul than any image in a mirror could have ever provided. Through the eyes of my child, I learned that it’s not my disability that defines me, nor is it a barrier to who I am as a person.

My limited sight is just one part of how I am, not who I am. It is the light that shines from within me and is reflected in my son’s perspective, which tells me, inside and out, that I’m beautiful!

As a vampire, I may not have the ability to view my own reflection in a mirror. But I’m blessed to have the immortal, unconditional acceptance from my son who sees me more perfectly than I ever did.

April Meredith the mighty

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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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