I Had Questions After Her Autism Diagnosis. One Answer Stood Out.

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This week we received a diagnosis of autism for our daughter, Jenna. Last year it was ADHD, the year before ear problems and before this hearing issues.

This has been a five-year journey of experimentation, failings, labels and stereotypical comments. She’s been labelled “naughty, loud, weird,” and we were constantly told by her school: “You need to get her checked out,” “There is something wrong with her” and “Have you considered testing?”

Glasses prescribed, hearing tested, IQ tested, and so on, with each specialist sending detailed reports on how to help her.

But still the label “naughty, misfit, failure, loud” were how people viewed her.

We just know her as Jenna.

This week as I sat and pondered what this diagnosis means to us as a family and to me as a dad, I was at a loss.

After I felt like I got it wrong for the past five years, I asked myself these questions:

  • Did that lesson my abilities as a Dad?
  • I missed the signs for Jen; what else have I missed?
  • What did I do wrong?
  • Why did I miss all the signals?

I soon got over myself and came to this understanding: the girl I know as Jenna is still the girl I adore.

As I began the road to discovery, I began asking myself, and for that matter anyone who would listen, these questions:

  • Where does she fit on the spectrum?
  • What have I missed?
  • What treatment is needed?
  • What do I need to change?
  • Have I made the problem worse?
  • How do I shut up the skeptics?
  • How do I embrace her uniqueness?
  • Does she need “the label”?

Putting all the rules, diagnosis, stigma, and people’s comment aside, I can come to a conclusion: Jenna is Jenna, and Jenna can be Jenna, and no label will change that I love my Jenna.

She is unique and different, and honestly, will likely find it difficult to fit into cultural norms for a long time. The diagnosis of autism spectrum disorder (ASD) can’t change that.

I can’t change my daughter not being able to read social cues correctly.

I can’t change the fact that creating friends might continue to be a challenge for her.

I can’t change her being the most literal person I have ever met.

But…

Jenna is Jenna, and Jenna can be Jenna, and no label will change that I love my Jenna.

If I could make a wish and dream big for Jenna, it would be very simple: I want people to value her, laugh with her and embrace her uniqueness.

Just like every one of my four children, she has the potential for greatness. A potential to change the world. I just pray that everyone, like myself, sees the greatness that is my 9-year-old ASD kid — or as we know her at home, Jenna.

A version of this post originally appeared on My ASD Princess.

The Mighty is asking the following: What’s one 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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The 3 Things I Do When My Anxiety Comes Back

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Any of you anxious peeps will know that when anxiety comes to visit, it’s hard to get things done. Tasks that are normally super easy and short become complicated and drawn out. Decisions take longer to make, and your head and your whole being becomes wobbly and noisy.

It’s vital that you seek help for anxiety and that you learn to manage it as best you can. So what do you do when that old friend is in town? Well, here are three things I do when my anxiety comes back:

1. Accept it. My goodness, this one is hard, isn’t it? But it’s not going to go away just because you are willing it to. You have to accept it.

Two years after I was diagnosed, I spent several intense and exhausting months workshopping acceptance with my psychologist. I hated it because I had to really deal with some feelings and, well, feelings. Plus, I had to be comfortable with my life the way it was. Without changing it. Just accepting it as it is. But once I got through the tough parts, I felt heaps better. So when anxiety comes back to visit, I accept it quickly and acknowledge that, yes, my unwanted bed fellow is indeed present.

Acceptance doesn’t mean merely to tolerate but to embrace life. It literally means taking what is offered. So let it in. I don’t always want to let anxiety in, but when I do, I’m without a doubt calmer. This doesn’t mean that I like where I am right now (I’d love to be even more free from anxiety) nor does it mean that I intend to stay in this space, but if I more freely accept the reality of my situation, I have more of a chance of being able to take action to change it. Acceptance of the here and now is key to this for me.

2. Empty my head by writing things out. I recommend starting to write lists. Even if you aren’t a list-maker or even if you don’t want to adhere to a list, it might help to get that noise out of your head and onto a piece of paper. Sometimes it seems less stressful when it is on paper. The inside of your head can get filled with so many other emotions and little thoughts that the enormity of what actually needs to get done becomes completely overwhelming. So write it down. Get it out. Let it out.

You can also meditate to help empty your head, and this is especially powerful after writing a list. Try the Smiling Mind app to guide you.

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3. Give myself time. Then I move on. When I’m having a particularly gray period, I have a little chat with myself. I highly recommend you do this somewhere private because people will look at you oddly if you are just chatting away with yourself over your latte. Once I kind of get an understanding of what’s at the core of my worry and unrest, I give myself a set amount of time to deal with it. I may decide that I can have a day to wallow (this is a guide and is completely fluid, depending on your own head space) and then two days to take action on it. After that, I try to move on and put it behind me.

My management of mental illness requires a great deal of resilience. It is often challenging and always exhausting, but if in the end I feel better, it’s worth the discomfort of a bit of acceptance, list-writing and time.

A version of this post originally appeared on Colour Me Anna.

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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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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