Proposed Oklahoma Law Could Really Help Parents of Children With Autism

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Oklahoma lawmakers and parents are fighting for insurance coverage of children on the autism spectrum.

Oklahoma is one of only seven states that do not require insurance companies to help with autism treatment and medication costs, Fox 25 reported. In an attempt to change this, Representative Jason Nelson authored House Bill 2962, which will make insurance companies cover treatment and diagnosis costs of children on the spectrum up until they are 18.

Parents have left the state because they say the cost of much needed and evidence-based treatments are too much, especially when many of the states surrounding Oklahoma have laws in place that require insurance companies to pay.

It kind of stinks when you’ve been paying into your insurance and they tell you ‘we’re sorry you’re not covered,'” Phil Inzinga, an Oklahoma resident and autism parent, says in the video below.

This is only the state’s latest attempt, because in 2008 a similar bill, “Nick’s Law,” named after Nick Rhode, was proposed, but the bill was never even heard. The Rhode family ultimately left the state.

Get more on the story from the video below: 

 

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The Reason I’m Lucky to Have a Special Needs Family

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Just now I was sitting outside on the porch, enjoying the fresh air and only slightly cool breeze that is a Texas winter, and had a rare, contented moment of thinking, “I love my family. I am so lucky.”

For the ordinary person, that wouldn’t be an unusual feeling to have, but having a child with special needs means that sentiment doesn’t fit into society’s narrative of what it’s like to be a special needs family. I should love and be devoted to my family, but I shouldn’t necessarily consider myself lucky.

“That’s not true,” you say. “I wouldn’t be surprised to hear someone say they felt lucky in their special needs family.”

But way deep down, maybe there’s that tiny, dark place where you think, “I feel so lucky to have ‘healthy’ children.” Because to many people, someone with a disability is an “other.” Her child is different from my child.

But I tell you, I am lucky. To an extent, most of us special needs families are. This isn’t the part where I say, “We’re not lucky because of the disability, we’re lucky in spite of it.” And I’m not going to run through all the valid attributions of “being lucky to have my child alive” or “being lucky to have a child at all, when many can’t.”

What I’m referring to is the unavoidable and essential ability to view things through someone else’s eyes (to the extent that you can). With autism, you must learn early on how to ferret out the antecedent to a meltdown, or you won’t know how to avoid future meltdowns. Was it a sensory response? Was he overstimulated? Is he coming down with something? Are his clothes uncomfortable? Did the change of routine cause an anxiety overload? You think of little else for days or weeks on end, not because you want to, but because you become obsessed with trying to understand your child.

When you’ve finally uncovered that the sound of your hairdryer is causing your child major anxiety, you set about changing the environment so your child won’t be caused distress. Most of us will close doors and get our child noise-canceling earphones. We know avoiding hairdryers for the rest of their lives isn’t reasonable, but making small, doable changes is reasonable, and you are relieved to ease your child’s pain by just that small accommodation.

In short (lie; this is terribly verbose), you learn how to critically examine cause and effect, and analyze the interactions of different experiences on mood and behavior. Because you have to.

This brings me to my hypothesis: most “typical” people don’t have to think in those terms on a constant basis. I would venture that the “average” person goes about their day, giving little thought to whether the sound their shoes make on the tile floor is bothersome to someone, or whether they’ve properly prepared to use their hairdryer.

The reason this acquired necessity makes us lucky is because it gives us an enhanced way of viewing the world. You many not understand why that enhancement is as valuable as it is, so I’ll try to illustrate it.

Imagine if you worked at a convenience store, and one evening a young man comes in and holds a gun to your head, demanding all the money you have in the cash register.

Now, some of you would try to calmly do as he asks, hoping and praying he just doesn’t kill you. Some of you might actually try to fight him, or grab for a weapon behind the counter. Either way, no matter which way you responded, you would probably feel angry and want him put in prison for a long time. He’s a criminal. He’s a scumbag who steals from hardworking people instead of getting a job.

And maybe he is those things. But how many people would take the step beyond to wonder what conditions came together to make up this man’s life, leading him to commit those crimes? And to have the wherewithal to know that asking those questions, caring about those possible conditions enough to give them careful thought, doesn’t mean you’re excusing the behavior or the need for a consequence. On the contrary, having those thoughts leads to discussions. And discussions lead to careful inquiry about important circumstances that shape people’s lives, like poverty, racism, classism, disability, gender identification, sexuality, family dynamics, community and health resources.

Maybe you’re thinking you would be the kind of person to think about those things. At the same time, thinking about those things and even talking about them doesn’t mean we can run right out and make all those changes so that everyone has a wonderful upbringing, right? That’s true, but we’re not stopping here. There’s a next step to this.

The next step in this process is to consider: if we know that human beings growing up in certain environments are more likely to have some kind of negative outcome, which ultimately affects society as a whole, then how do we begin making changes right now that will create positive long-term effects in our country? With the knowledge of how conditions shape human behavior, do we reconsider how we approach the big topics we wrestle with as a nation, like wage equality, access to women’s health services, investing in impoverished communities, mental health services and access to higher education? Do we look at the utter failure of our prison systems to “rehabilitate” criminals, as evidenced by the high rate of recidivism? Do we think about whether spending federal dollars upfront to avoid future criminal behavior by investing in people and their environments, rather than spending it to house them endlessly in prisons that are perpetually bursting at the seams? Do we then apply this advanced level of critical thinking to the choices we make politically?

Have I lost you yet? Are you tired of trying to keep up with this train of thought?

As exhausting as it may be to analyze things to this extent, it’s the very reason I feel lucky to have a special needs family. The training I got from my son has given me a lot more anxiety, that’s true. But it’s also given me the ability to think far ahead about the cause and effect of conditions on human beings. And it’s given me the invaluable knowledge that it’s essential to our long-term survival to see the kinds of changes needed to elevate us as a species, rather than remaining unconcerned for those “other” people until they come to us to commit a crime.

I am lucky. My life and my thoughts are infinitely more challenging and complex, and it’s worth it. If it wasn’t for my son, maybe I would be someone who thinks we need more guns, more prisons, more walls, more police, more us versus them.

Instead, I’m someone who wants more access to healthcare, more education about diversity, more community centers, more access to housing for the homeless, more benefits for veterans, more mental health resources, more kindness, more love — because I know these are the kinds of supports that shape positive outcomes that ultimately affect all of us.

Follow this journey on The Connor Chronicles.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

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When a T-Shirt Sparked a Conversation About Autism Awareness

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A t-shirt is like a walking billboard to me. It spreads a message. When my son Dominic’s teacher was ordering autism awareness shirts a while back, some of my family and friends ordered one.

My daughter, Lauren:

girl wearing autism awareness t-shirt
Cathy’s daughter Lauren

My “auntie” who lives in Virginia:

woman wearing autism awareness t-shirt
Cathy’s “auntie”

And my brother who lives in Maryland:

man wearing autism awareness t-shirt
Cathy’s brother

I especially like the message on the front: “Autism Awareness – Accept – Understand – Love.” My brother told me recently about a gal who saw his shirt when he was out and about one day and started chatting with him. She asked my brother if he had read a particular book on autism. He said, “She was very enthusiastic and happy to see the t-shirt in public. She instantly connected with me even though we’d never met. I was a person in her camp.”

My brother agreed that was true! I love that wearing a t-shirt starts the conversation.

Follow this journey on Bountiful Plate.

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Dear Leonardo DiCaprio: You Helped Me Succeed as a Person With Autism

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Dear Leonardo DiCaprio,

When anyone goes after something in his or her lives, a word that often comes up in the conversation is the need for “commitment.” Growing up with a passion for film, watching your commitment as an actor, to take on different characters and to shine in them, has had an incredible impact in my development. 

My journey with the word “commitment” started when I was diagnosed with autism at 4.  Theater therapy was something that helped me progress when many other things wouldn’t. I instantly became one of your fans when I got involved with theater and then later started watching films. I saw your commitment in your films right off the bat. I would try to mimic that type of commitment in my roles on stage.

I couldn’t explain what it was in your roles until I read about the months on end you would take before each role to prepare both physically and mentally to command your performance. That was something I wanted to do.

Later, I’d learn this commitment I was putting into my acting was something I needed to put more and more into my therapies. You can often feel stretched to the limit when you have to juggle physical, speech and occupational therapy, but stretching is something I could see in you as you stretched yourself to film several movies at once. You could make it through all of that. It made me realize I could do that also.

From my therapies I turned to doing well in school, and maybe most importantly, proving people wrong about what I would be able to achieve in my life.

As I followed your career into my teens, I got to know more about your work helping others. That’s something I admire as someone who started community service for the first time in high school. I later wanted to become a disability advocate to help those with special needs like me.

After following your work for years, and everything you do for others, I would like to commend you. When I think about commitment as an adult who has been able to overcome obstacles to become a speaker, author and film consultant, I can only hope those who read this, regardless of their age, disability or gender, know they can achieve anything they want in their lives. I hope they can have the same type of commitment you have shown time and time again in your career.

Congratulations on your success and for everyone you have inspired and will certainly inspire in the future.

Your friend,

Kerry

A version of this post originally appeared on Kerrymagro.com.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. 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 Submit a Story page for more about our submission guidelines.

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Why My Late Autism Diagnosis Was Better Than the Alternative

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I am a child of the 1980s. I watched the first season of Nickelodeon. I ate Kraft cheese and Oscar Meyer b-o-l-o-g-n-a on Wonder Bread sandwiches every day. I saw every Molly Ringwald movie. I saw New Kids on the Block when they were still opening for Tiffany. I was an innocent girl who suddenly walked into third grade and found she no longer had any friends because that’s the year the great divide between popular kids and the ones who got bullied appeared.

My mother always said “just ignore it.” But I couldn’t get her to tell me how. Apparently, I reacted differently than the other kids. So it was even more fun to taunt me. My mother got to the point where if I wanted to stay home from school, I had to be willing to call the doctor myself to make an appointment.

I would say inappropriate things or have inappropriate facial expressions. I would freak out at sounds and smells and touch that others took in stride; in fact, my “temper tantrums” have been referred to as “legendary.” I never got subtle humor, so there were misunderstandings aplenty. Friends were rarely better than acquaintances. As I got older, I couldn’t keep a boyfriend longer than three months.

I was smart. I was in the gifted and talented program from elementary school through high school. In ninth grade, I gave a speech before governors on Earth Day. I was a finalist in a national high school mathematics competition. I graduated with a bachelor’s degree from a Big Ten university in three years with honors. I interned at National Geographic magazine. I was the woman for whom there were no rhetorical questions. I could figure anything out. But I couldn’t figure out how to get along with people.

The year I turned 25, my parents wanted me to move back home to the Midwest, but to me that was defeat. So I picked up and moved from one coast to the other to get away and “figure out” the solution to this problem, too. I had enough saved to last about three months, which was plenty of time to figure this out, right? Nope. Then, it got worse. The diagnosis turned into major depressive disorder. I couldn’t work. I went on disability. I only left my tiny one-room apartment to go to the grocery store or the doctor.

It wasn’t until my 20s were nearly behind me and I saw a Time magazine article about a little boy with autism that I finally figured it out. I showed it to my psychologist, and after a year-long battle to get it covered by insurance, I had an appointment to be evaluated.

January 7, 2016 marked 4,500 days since my autism diagnosis. I keep track in recognition of the day my life began again. I could finally understand why I couldn’t understand. I got services from the local regional autism center. I slowly transitioned back into the world. Now I’m married, and we own a home in a quiet suburb of Los Angeles. I work from home so I don’t have to remember to use the right facial expressions or deal with the cacophony of a cubicle farm. Every day, I work remotely with technology teams from Texas to India who take my ideas and bring them to life for a major corporation. I am the official “autism champion” for my global company in Southern California. I volunteer with a local charity to help my compatriots struggling to find their place in the world. I teach law enforcement about sensory issues to aid in dealing with those in crisis.

I am an adult with autism. I am autistic. No matter how you say it, my life is better with the diagnosis.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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 Submit a Story page for more about our submission guidelines.

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To the TSA Agent Who Took My Son With Autism and Me Aside

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Dear TSA Agent,

I am sure you screen hundreds of people every day, and you probably don’t remember me or my family — but I remember you. I remember people who make me cry.

boys hugging at Disney World.
Kelly’s sons at Disney World.

It was my family’s first vacation together and my children’s first time on a plane. At the time, they were 7 and 9 years old, and we were very excitedly heading to Disney World.  My youngest has autism and is nonverbal, so I prepped for this trip for months. I read blogs and websites about preparing a child with autism for travel, preparing for the crowds at Disney and for the first time on an airplane. I called the airline and talked to an agent. She was patient enough, asking if I would prefer to be seated first or last. I requested as close to takeoff as possible so it would mean less time on the plane. She put a note on our itinerary so the expectation would be set with the associates at the airport.

The day before, I was able to check everyone in but myself. My ticket required that I stop by the ticket counter to check in. When I arrived, the agent explained that because of my special request, my ticket had been flagged. I don’t fly very often, but I’m pretty sure it’s not good to have your airline ticket flagged. The pit in my stomach worsened.

We walked to security, where you sat, a smile spread across your face. You greeted us warmly and asked for our tickets. I had everything: birth certificates, a marriage certificate and a doctor’s note explaining Patrick’s diagnosis. You simply asked for our tickets and our driver’s licenses. You studied them and stopped on mine, then looked at both children. “Which one has autism?” you asked. A sense of dread came over me. I quietly pointed to the redhead clinging to my leg.

You smiled and bent down, trying to catch Patrick’s eye. “Is he verbal?” I squeaked out a “no.” You said “hi” to him and smiled again, and I felt his grasp loosen a bit. Then you turned your attention to Patrick’s older brother. You smiled at him and introduced yourself to him. He smiled back and told you his name was Brady. Then he barraged you with the excitement he was bursting with over his first time flying. You listened as he prattled on, your grey head nodding in acknowledgement. Then you turned your attention to us, and I steeled myself for your judgment, your questions.

“I just want to say God bless you,” you started. I was dumbfounded, unable to determine where the conversation was headed. “I have a grandson that is autistic.” You continued, telling us how you had taken your grandchildren to Disney World the year before. You talked fondly about your grandson with autism: “He was the best behaved, most appreciative and the most excited. I’m sure Patrick will have a wonderful time.”

My husband joked about Brady’s affinity for talking, and you both laughed. I found it hard to do anything but try to work around the lump in my throat. You patted Patrick on his head. “You know, he doesn’t have to be able to talk to tell you what good parents you are.” I smiled my appreciation, and you thanked us and wished us safe travels. The next person in line moved up to your counter and you greeted them just as warmly.

That interaction might not have lasted in your memory, but it certainly did in mine. Your words helped calm my apprehension and reminded me that my husband and I have a different experience than most, and there are people who recognize and appreciate that. I stopped to wipe my tears away and collected myself, ready to move forward.

boys sitting in chairs

A version of this post first appeared on Quad City Moms Blog.

The Mighty is asking the following: Share a travel moment related to disability, disease or mental illness that made you laugh, cry, roll your eyes 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 Submit a Story page for more about our submission guidelines.

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