The Politics of My Children's Health: 3 Things Politicians Should Keep In Mind

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I was lying in bed the other night, watching some show on a news channel. The hot topic of the night was — you guessed it — healthcare. News reporters were debating, senators were giving speeches and guest speakers were chiming in whenever they could.

One person would argue millions of people would lose healthcare under the new plan. The next person would respond by saying that number doesn’t factor in the economy’s growth. The debates continued for what seemed like an eternity.

Then they played a clip of the president saying how he’s going let the present healthcare system implode — then people will come to their senses.

Wait, what did I just hear? I think we need to take a timeout.

I didn’t hear one politician mention my well-being or that of my children.

I’m a mom raising four boys, and all of them have issues. One of my 12-year-olds has asthma and a severe nut allergy. He requires quarterly doctor appointments and several medications, even when he’s not sick. He also carries an Epipen everywhere he goes, just in case (I’m not going into how much that costs). My other 12-year-old has GI issues, nothing too serious, but he also requires medication.

My youngest two, the twins, were born prematurely. They’ve spent a collective 17 weeks in various ICU’s since their untimely arrival. Now one has an autism diagnosis and the other one is developmentally delayed. Together, they see three different doctors and a handful of therapists. They keep me very busy.

As you can imagine, healthcare is very important for my family. Personally, I don’t think either bill is good enough, so I’m not taking sides. Instead, I want to remind our politicians of a few things as they continue their discussions:

1. You aren’t debating a healthcare bill about numbers and statistics; you’re debating the health of real people. Frame your arguments accordingly. I don’t want to hear about tax breaks or special interests. I want to hear about supporting, researching and improving our care.

2. No matter how healthy you are now, you’re only one diagnosis or accident away from being “unhealthy.” We all have family members with age-related illnesses. Many of us have spotty medical histories ourselves. And then there are the children, the ones who can’t speak for themselves. We need to protect them. Even if your own child is “healthy as a horse,” you most certainly know a child who is nt. So before you begin talking about “pre-existing conditions” and “high-risk pools,” I urge you to keep these people in mind.

3. If healthcare fails, you all fail. I don’t care what bill you voted for. You’re not doing enough, as a whole, to improve our care. One side is having closed-door sessions while the other is making speeches to a room full of people in their own party. My 12-year-olds work together better than you do!

So as you continue debating about the health and well-being of my children, please set your egos aside. Focus on the task at hand. Our children are counting on you.

Follow this Journey at Not an Autism Mom

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To My Son With Autism Upon Starting Kindergarten

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Dear Son,

I guess I must have blinked, because here you are, a vibrant 5-year-old with big ideas and bigger dreams. In just a month, we will walk down the street with your backpack to enter the bustling hallways and classrooms of your new elementary school for your first day as a Kindergartner. You have thrived in your loving and intimate pre-school class, growing and learning with the same dozen children over the past three years. You say you are “so ready” for school, and I know you are. I also know you are likely to learn much more this year than you can imagine about yourself, about other kids, and about navigating an environment designed for neuro-typical children.

You might learn most other children don’t need to cover their ears to protect against the rebounding cacophony of sounds off the cinder block walls, or scoot over to the very edge of the cafeteria bench to avoid the wafting, pungent scent of a friend’s hot lunch.

You might learn most other children don’t routinely count by 13s or quote hilarious lines from favorite books and movies at the mere mention of a key word or phrase.

 

You might learn most children don’t jump up and down with exuberance at the sight of a rainbow, or stomp over and over in tight circles when they lose a competitive game.

You might learn these general truths as you acclimate to your new school. But how will you learn them? And what will you deduce about this wider, louder world in which you stand out for your differences? These are not lessons I can teach you. These are lessons to encounter in your own time. Some lessons will yield new opportunities. Some will hurt keenly.

My promise to you is I will greet you with firm hugs at the end of each day, and listen expansively to what you do and say about your experiences. I will advocate with empathy and vigor when you need me, and trust your growing capacity when you don’t.

Close-up of boy smiling

For the biggest truth of all is this: You are mighty, and worthy and loved for exactly who you are. For every lesson you learn, there is another one only you can teach. I know you are “so ready” for school. I hope school is just as ready for you.

Love,
Mama

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What We Know So Far About 'The Good Doctor's' Portrayal of Autism

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This September, ABC is getting a new show centered around an autistic doctor. “The Good Doctor,” based on a South Korean show of the same name, stars Freddie Highmore as Dr. Shaun Murphy, a pediatric surgeon on the autism spectrum who is described as having “savant syndrome.”

Speaking on a panel, the show’s executive producer, David Shore explained the steps the show took to portray autism. “We saw a lot of doctors, we consulted with people, we’ve got people on the spectrum who we’re working with,” Shore said, according to Deadline. “But he is a specific character, he’s not there to represent autism, he’s there to represent Dr. Shaun Murphy.”

Shore also said the show works hard to avoid stereotyping, despite focusing on “savant syndrome,” which is not specific to autism and is considered incredibly rare both within and outside of the autism community.

Highmore, the show’s star, also commented on portraying Dr. Murphy, saying:

What we are trying to do is moving away from perhaps the stereotypical versions of people with autism that have been shown on television and in certain movies in the past, the number one thing being that they are somehow devoid of emotion, that they don’t experience as broad a range of emotions as neurotypical people do, and of course that’s complete nonsense.

So far it does not appear as though any of the cast members are on the autism spectrum.

This is not ABC’s first disability-oriented series. In May, the network announced its show “Speechless,” a 30-minute comedy about a family with a teenage son who has cerebral palsy (CP), would return for a second season. Its main character, JJ, is played by Micah Fowler, who has CP.

Netflix is also releasing a new show centered around a character on the spectrum. “Atypical,” which premieres on August 11, is an eight-episode series following a high school senior named Sam (played by Keir Gilchrist, who is not on the spectrum). Sam’s friend Christopher, however, is played by Anthony Jacques, an actor on the autism spectrum.

“The Good Doctor” premieres Monday, September 25, at 10 p.m. ET on ABC.

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4 Things I Want My Sons' Special Education Teacher to Know

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A new school year is upon us! My twins, who turn 4 next month, are starting their third year of special education preschool. It’s a half-day program at the local public school. They absolutely love it! They get to ride the big yellow school bus, eat a snack and even do yoga with the physical therapist.

One of my boys, Julian, is completely nonverbal with an autism diagnosis. He is the sweetest, cutest kid ever. The other one, Dominic, is undiagnosed, with a severe language delay. He is also the sweetest, cutest kid ever.

I know most parents worry when they send their kids off to school. When my oldest son started kindergarten seven years ago, I mostly worried about his behavior. He is “all boy.” I worried about what color he would get in his folder every day. Could he adjust to sitting still for a longer period of time? How would he do making new friends?

Now that I have children with disabilities, my concerns have drastically changed. I no longer worry about my own children’s behaviors. I now find myself worrying about the teachers’ behaviors. I know that might sound negative, but let me explain — imagine sending your child to school with duct tape on his mouth. Seriously, take a second to imagine that. My children can’t voice their questions, worries, frustrations or fears. And to top it off, they can’t tell me about their day when they get home. It’s scary.

Their teachers and therapists are in complete control. I worry how they will handle their own frustrations throughout the day. It’s not that I don’t trust them, because I do. My boys have an amazing team working with them. I just know how hard their jobs are… and I know how irritated I can get on a daily basis.

Even though my boys are at different levels and have their own specific needs, my message to their teachers is the same.

 

Here are a few things I want them to know:

1. I appreciate you.

In the midst of meetings, conferences and classroom parties, there will be times when I forget to say this. But it’s true. If I could buy you a drink every day (alcoholic or caffeinated), I would. You have one of the most important jobs in the world. Thank you!

I also know you don’t live at school. I know teaching is your profession and you have a life outside of work. I realize you get sick, your family gets sick and life happens. You have a demanding job. I couldn’t care less about your lesson plans being typed up and your newsletter coming home on time. So relax… I’m in your corner.

2. I’m counting on you.

I’m entrusting you with two of my children. Neither one of them can tell me what happened at school that day. Imagine how scary that is for me. You’re not only their teacher, you’re their “mother” when I’m not around. I want you to treat them as if they were your own.

3. I’m not Super Mom.

I try my best. But I’m stretched thin. During the first week of school, my boys will have on fresh clothes and shoes. They’ll have cute little snacks and their hair will be brushed.But there will also be mornings when we miss the bus because their insomnia kept them (and me) awake at night. I may even forget to put a snack in their bags one morning because my other two kids wouldn’t get out of the bed (because teenagers).

Please be patient with me and don’t take it out on my boys. It’s not their fault when I can’t handle life. Remember, I’m counting on you.

4. Their emotional health is more important than their IEP goals.

My family has worked very hard to make sure my boys feel safe and loved in a world they often don’t understand. That sense of security can be ripped away in an instant if they’re pushed too far. Of course I want my children to master new skills and make developmental gains. But that won’t happen if they don’t feel safe… if they no longer like school.

There will be days when they just can’t “get it together.” But remember, they’re not being bad. They’re simply frustrated. So when that happens — and it will —  call me! I may have ideas that could help get them back on track. Or I may even decide to pick them up. We are in this together — we’re a team.

My children are my world and I’m doing everything I can to help them progress. Sending them to school is a huge part of those efforts. As a parent, I’m counting on you to protect, encourage and guide them. I’m looking forward to the year just as much as you are. So, thanks in advance!

Follow this Journey at Not an Autism Mom

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U.K. Stores to Hold Nationwide Quiet Hour for Those on the Autism Spectrum

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On Monday, October 2, shops across the U.K. will observe a nationwide quiet hour as part of an autism awareness initiative benefitting shoppers on the autism spectrum.

In partnership with The National Autistic Society (NAS), on that day all 14 of intu Shopping Centres will reduce their lights, music and background noise starting at 10 a.m. Also participating are Clarks and Toys ‘R’ Us stores throughout the country, both of which, have previously hosted quiet hours for shoppers on the spectrum.

While the event starts on October 2, stores throughout the U.K. are encouraged to participate at any point during the week.

According to research from The National Autistic Society, 64 percent of autistic people avoid going shopping, and 28 percent have been asked to leave a public place for reasons related to their autism.

“Like anyone, autistic people and their families want the opportunity to go to the shops and services on the high street. But our research suggests that many find the often busy, loud and unpredictable environment of public places overwhelming and avoid them altogether,” said Mark Lever, chief executive of the National Autistic Society, adding:

“We hope that the hour will provide a break for families in the week and in the long term will help spread understanding so that shops and services are more accessible every day of the year.”

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My Son's Autism Is an Invisible Disability

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My son’s autism is invisible. When I first expressed my concern that Henry was two and had only spoken two words and had stopped saying them months ago, our pediatrician told me Henry looked just fine to him. Yes. A pediatrician. While it’s frightening that a medical professional, one I love and respect, could not see past the invisibility of my son’s disability, I can’t fully blame him. This is human nature. For many of us, seeing means believing. And not seeing, not knowing, terrifies us. We can find the worst parts of ourselves when we are faced with the unknown. I am guilty of the same well-intentioned, yet harmful misconceptions.

Before my son was diagnosed, when I first moved into my current home, there was a man who walked by my house, a lot. Back and forth, he walked past my house. My instinct was to lock my doors. Weeks passed and I began to see the man walking everywhere, all around town. I remained cautious. A few months later, Henry received his diagnosis, and I began to learn all about autism spectrum disorder.

 

One day, as I drove down my street and passed the man pacing my block, it dawned on me. Maybe he is autistic. Maybe his repetitive behavior that soothes him is walking. What if one day Henry finds comfort in long walks? What if someone sees him, misunderstands his behaviors and judges him? What if they are afraid of him? I began to look on this man with compassion; I began to look upon him with the same kindness that I can only pray that others will bestow upon my son. I haven’t seen the scary man surveying my neighborhood in a long time. However, I do see a man who is minding his own business, and enjoys long walks around my neighborhood, quite often.

Autism can be invisible. This fact is a double edged sword. It will help my son in life, and it will hurt him at times. The fact that one cannot see his autism spectrum disorder, will at least impact how people will judge him. It will also leave him vulnerable to misunderstanding and unsolicited judgements. So much of how we deal with situations and people is based on our perceptions. Sometimes our perceptions are born from experience, knowledge and our personal ideologies. But sometimes they are born from fear, misunderstanding and ignorance.

How do we reconcile these conflicting motivations from our perceptions? We can begin ceasing our efforts to identify the disability. Education is wonderful, and I’m all for it. We should all educate ourselves about disability. But even a thorough education can be insufficient in identifying certain invisible disabilities. You could not possibly identify every disabled individual’s personal symptoms, traits, idiosyncrasies, self-regulating and repetitive behaviors. Autism spectrum disorder can be a great example. It is an umbrella diagnosis, meaning it encompasses a wide range of symptoms, and each individual’s coping mechanisms for these different symptoms is unique. In other words, it’s a mixed bag. And they don’t say, ” if you know one person with autism, you know one person with autism,” for no reason.

So if we cannot possibly learn how to identify each individual’s invisible disability through self-education, then what can we possibly do? Instead of looking for the disability in others, look for the humanity you share. When you see someone who looks different than you, or even someone who looks the same as you, and you don’t understand them and your instinct is to runaway, or stare, or judge, try not to. It’s that simple.

Instead of looking for someone’s disabilities, look within yourself for what we all share. Compassion, kindness, acceptance — they are all at your at your disposal. There is something even more fundamental than education in life: humanity. Sight can be one of our least reliable senses. Our hearts, however, are fully equipped to see what our eyes cannot. Close your eyes, open your heart, and you will see more than an invisible disability — you will see people, beautiful people.

Follow this journey at Diaper Diaries

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