Dear Autism Parents, I Don’t Know Your Story, but I Know You Need This

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Dear Autism Parent,

Having a child with autism myself, I imagine this road hasn’t always been easy. It’s a road that often can’t be fathomed unless there are fellow travelers.

But traveling the same road is not the equivalent to having the same journey. I can’t begin to know what your days, hours, minutes and seconds are like. Autism may be the line that connects our dots, but our challenges and how we persevere changes the dynamic a bit and causes our stories to differ.

I can speak about my child and the successes, the falls, the fears, the dedication, the bottomless pits and the brighter days. I have four sons overall. It can be challenging to care for all four, especially when the needs of one of them are more. So I don’t know what it’s like to walk in your shoes. I can’t tell your story.

But what I can tell you is parents with children with autism need support. We need encouragement. We need to feel like we’re not failing even though signs of improvement are nowhere in sight. We need someone to listen and not feel like they have all the answers. We need someone to care and someone who “gets it.” No explanation needed. No judgment. Just someone who understands.

Well, I get it! And without ever meeting you, I applaud you for being a remarkable parent. Your strength, courage and tenacity are to be admired. And yes, every mom and dad should step up to the plate because that’s what you do when you’re a parent.

However, sometimes the reality can be too great, and some may find it easier to walk away. Optimism can be hard to find when the days and nights intertwine.

So on behalf of your child, thank you for staying. I know it’s tough. I don’t think any journey is meant to be a piece of cake, no matter how hard we pray for it to be. Nevertheless, this walk we take makes us stronger and more determined to make sure the needs of our children are met.

This doesn’t mean your strength won’t be depleted during your journey. You may even have a meltdown yourself from time to time. But don’t ever think your work is in vain. Don’t think your words are empty. Don’t think you’re not being effective. And please do not think that hope is lost.

The fact that your children are still here has so much to do with you loving them, believing in them and never giving up on them. The truth of the matter is no one can do what you do and get the kind of results that have professionals scratching their heads in disbelief.

No one is more dependable, no one is a better advocate and no one knows your child better than you. Although exhaustion, fear, confusion and, at times, discouragement may encompass you daily, look at your child and know this fight for accommodations, for quality of life and for just getting through the day are beyond worth it.

I’m here to give you this: A high-five, a pat on the back and a thumbs up. You’re doing a great job! The possibilities are endless, and my hope and prayer for you is that you find acceptance, progress, achievements, miracles and much strength and appreciation along the way.

From the heart of one autism parent to another,

Portia

Portia Dawson the mighty.2-001

 The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to community@themighty.com. 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 I No Longer Hide the Equipment I Need to Manage My Diabetes

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It took a transit at the airport in Istanbul, Turkey, to prompt me to change my mindset about my chronic disease. I’ve had type 1 diabetes for 16 years. The thing about being born with a disease or diagnosed at such a young age is that you grow up accepting whatever your parents tell you about it. If they’ve got fears and insecurities, you might adopt them. If they feed you positivity, and courage, you might grow into them, too.

Throughout those 16 years, I did three insulin injections per day. I’d never do them in public – I always went to the bathroom to do it. Only at home was I permitted to do it wherever I was at. It was normal for me.

You wouldn’t think that’s so bad, but it didn’t help my suppressive attitude toward a disease I’ll have to live with for the rest of my life.

In 2011, coming back from a family holiday in Greece, we waited for our next flight at the Istanbul airport. After we finished our dinner, I had to do my injection. As I got the kit out, my mom pointed to the man at the table opposite to us. I saw he had the exact same flexpen as I did, and he was doing his injection out in public, on the right side of his stomach. When I looked up to see what she was describing, he just finished his injection and was pulling the small needle out of his stomach. I watched.

Even though I still went to the bathroom to do my own injection after that, I remembered what my mom described, what I saw. And I wanted to learn from it.

The next time I had to do my injection, I told my parents I wanted to do it in public. No more hiding in toilets or changing rooms or whatever. No more.

That stranger changed my outlook on diabetes.

I don’t blame my parents for my previous outlook – they were just doing what they thought best to protect me. But I’ve grown up now, and it’s still my disease.

I’ve recently switched to an insulin pump, which allows for better blood glucose control. On our way to an extended family reunion, my dad made a scene about the cropped plaid shirt I chose to wear. You can see the “site” where the insulin pump connects to my body. He didn’t want it to be exposed in public.

But if you see it from this perspective: during a meal, I don’t ask you to go to the bathroom every time your pancreas is producing insulin to allow glucose to be absorbed from your bloodstream, so why must I hide my insulin intake?

If people stare, that’s their business, not mine. Constantly hiding the equipment I need to manage my disease is forcing me to hide a part of myself that’s brought about some of the best moments in my life. I’d prefer strangers’ questions over any incorrect silent assumptions any day.

To anyone else with diabetes out there, please know this: Your daily diabetic routine, whether it involves injections or pumps or otherwise, doesn’t make you inferior. It’s OK not to want to display this routine in public sometimes; it’s OK if you want to hide it from certain people if that’s your decision. But don’t let those who don’t want to see it make you feel like a part of you is unworthy of acceptance.  Diabetes (however long or short one has had it) is an integral part of all of us, and like any other characteristic, it needs to be wholly accepted in order for us to move forward.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. 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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As a Mom of a Son With Special Needs, I Beg You to Have ‘the Talk’

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This summer is the first summer Baker has been 3.

Silliest of statements, I know. Of course this summer is the first summer Baker has been 3. Hear me out.

Three-year-olds get to play with the big kids. Three-year-olds are no longer considered babies and given the grace babies are given.

Babies are allowed to sit quietly. Babies are allowed to keep to themselves. Babies are allowed to play in their own safe area.

There are no expectations surrounding play with babies, except that babies will be babies. Babies do what babies do.

Last summer, and the summer before, and the summer before that, Baker was a baby. This summer is the first summer Baker has been 3.

This summer is the first summer Baker has played with the big kids.

This summer is the first summer Baker’s play has been laden with expectations of looking and sounding a certain way.

This summer is the first summer Baker has been noticed as different.

Before, Baker could sit on the sidelines. He could bounce on my lap and giggle and coo to everyone’s delight.

Before, Baker was a baby. Before, it was OK Baker could not talk, could not run as quickly, could not jump as high.

Before, none of the other kids saw Baker any differently than they saw their baby sister or little cousin. He was a baby (and a darn cute one). He did what babies did. Because of his different abilities, some of it came at a slower rate and took much greater effort. His hypotonia caused his chubby little legs to frog out when he slept and his little body to collapse into mine, winning him all the awards for world’s greatest snuggler. He was a baby, and everybody loves a baby. Especially Baby Baker.

This summer is the first summer Baker has been 3. And because of that, this is the first summer our little sphere has been expanded. And because of that, two things have happened to this momma’s heart: it has experienced both unspeakable joy and unspeakable ache.

My heart has threatened to overflow watching Baker create new friendships. I’ve been so encouraged listening to other mommas enlighten and empower their children with knowledge about Down syndrome as questions have presented themselves about why Baker’s play and talk differ from their own. I’ve loved watching the innocence of children, as they love with their whole heart, without judgment and with unhindered acceptance.

My heart has also threatened to shatter into pieces as I see other children notice Baker’s different abilities. “Is he special ed?” one asked innocently. Others can’t understand his fascination with perfectly folding all of our beach towels instead of bounding down the slide like all the other children. Why, when their conversations flowed as easily as lemonade on a summer day, did Baker prefer silence? Why, when he does speak, does he often do so first with his hands and then with words that sound so differently than our own? Why does he often drift to the perimeter when all of the action is in the center?

Why is he different than me?

Could you answer that question?

Little more than three years ago, I would have stuttered through it, preferring to brush it under the doormat or opting to combat it with the eye that commanded silence instead of opening doors to a conversation of acceptance.

As the mom of a seriously great kid, who happens to have unique needs, I beg you to have the talk. The talk about likes and differences, and how often we’re more alike than different.

If you need a name, use Baker. If you need a face, I think his is pretty perfect. If you need words, use a picture book (spoken like a true teacher, ha!). I love “We’ll Paint the Octopus Red.”

Your children won’t mind if the words aren’t perfect or eloquent or include textbook terminology. They can be simple and succinct and from the heart.

From the bottom of mine, thank you.

More than you know, thank you.

Photo credit: Katie Thompson Photography

Follow this journey on Our Dream Come True.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. If you’d like to participate, please send a blog post to community@themighty.com. 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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Explaining Epilepsy to Your Kids Just Got Easier

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Living-with-Epilepsy-cvr It’s estimated one in 26 people will develop epilepsy sometime in their life. While the neurological disorder is prevalent for every age group, it’s more common for young children and older adults, according to the Epilepsy Foundation. Trying to explain epilepsy to children can be difficult, but that’s where Medikidz comes in. The company publishes comic books from kids’ perspectives that help families understand health issues. Now, Medikidz has partnered with Eisai to develop a comic book series called “Medikidz Explain Epilepsy.”

“We’re taking the real, clinical science behind the disease and medicine, and we’re explaining it to kids in a way they can understand,” Melissa Frascella, Medikidz Account Manager, told The Mighty. “It helps them feel empowered.”

Recently, Medikidz published the third of a four-part series, written from the perspective of a teenager with epilepsy. Megan, a 16-year-old, is the star of “Medikidz Explain Living With Epilepsy.”

“It shows all aspects of it. The good, the bad and the ugly,” Megan says in a Medikidz video. The book emphasizes that people with epilepsy shouldn’t let epilepsy run their lives.

“I would tell other people with epilepsy to just do things,” Megan says. “Things that make you happy, things that you love, and don’t ever let epilepsy stop you from living your life.”

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“Medikidz Explain Living With Epilepsy,” “Medikidz Explain Epilepsy” and “Medikidz Explain Seizure Assistance Dogs,” are available free to anyone. The books are also distributed to doctors offices and at community and advocacy events.

“Education is key to learn about and really understand what epilepsy is and how it affects the body,” Frascella told The Mighty.

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You can learn more about Megan’s story in this video.

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When Her Friend Died of Cancer, This Woman Stepped Up in an Amazing Way

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Laura Ruffino and Elizabeth Diamond, from Buffalo, New York, were best friends since the fifth grade.

When Diamond was diagnosed with stage IV brain cancer in August of 2014, she asked Ruffino to look after her children if something ever happened to her, ABC News reported. Ruffino didn’t hesitate to answer.

I instantly said ‘OK,‘” Ruffino told the outlet.

After Diamond passed away in April, Ruffino, her husband Rico and their two daughters, immediately welcomed Diamond’s four daughters and adopted them. Lily, Ella, Samona and Tara, ages five to 12, are now part of the family.

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Via the Ruffino family’s YouCaring page

The Ruffinos are working to rapidly accommodate the new additions to their family as best they can but would like to make some changes in order to make the girls more comfortable, according to their YouCaring page. They are hoping to get a van that can seat all six children and would like to convert their garage into additional bedrooms for the girls.

Get more on the story from the video below: 

Visit here to donate to the Ruffino family. 

h/t BuzzFeed

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Why I’m Dedicating This Blog Post to My Dad’s Snoring

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I dedicate this blog to my dad’s snoring.

I tease my dad endlessly about his nightly habit — it’s truly something out of “Looney Tune”s or an old Disney short (imagine a blanket rising up and down over the bed). But in reality, the sound of my dad snoring and the fact that he’s actually sleeping is music to my ears. Here’s why:

My first seizure was in the fall of my sophomore year of high school. I was on a high — I was in the middle of an extraordinary tennis season I worked hard for, my grades were great and I had an amazing group of friends.

Then one night, I woke up, and my parents heard me slam up against the bathroom door and engage in a 4.5-minute full-body seizure. That’s it. There were no signs, no symptoms, no stressors. My folks were blindsided.

To hear them recount this tale then — “We heard a thud, we tried to push open the door, there was nothing you could do, you just want to hold them and know you can’t” — was horrible. But to hear them recount it now that I’m a parent is just devastating. I can’t even imagine what my parents were going through, but I try, and it makes us closer.

Up to 10 percent of the world’s population experiences one seizure in their lifetime, but epilepsy is defined as having two or more unprovoked seizures, so after my first seizure and appointments with neurologists, I was told to just wait it out and see.

Dad never really slept again.

I remember coming home at night, going to the bathroom at night, waking up earlier than him in the morning — in high school, during summer breaks in college, even as an adult when my husband and I briefly lived with my folks while our house was being worked on — and my dad saying, “Brig, is that you? Everything OK?” I remember me saying, “Go back to sleep” with a smile.

I did continue having seizures until my senior year in college, but now I’m 14 years seizure-free and a parent. I finally hear my dad snoring, and sometimes I think, “Yep, I get it. And, I love you too.”

Follow this journey on Step Up for Epilepsy Awareness.

Do you have a story about your experience with epilepsy? Please send it to epilepsy@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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