A Few Things I’d Have Told Myself Before Our Autism Diagnosis

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Here are a few things I would have liked to tell my then self, my pre-autism self:

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My daughter, Shea

1. It’s not the end of the world. It can be crazy hard at times but it will enrich your life in ways you never imagined. Our daughter was diagnosed at Children’s Hospital on Halloween at 18 months. The halls were filled with little kids trick-or-treating in their costumes. Distraught and devastated, I looked at my husband and said, “What are we going to do?” and he said, “We’re going to love her with all of our heart,” and we have from day one. Little did I know then, one of the happiest days was going to be trick-or-treating with my 16-year-old daughter (in her prison costume) seeing genuine, unbridled love and happiness in her eyes.

2. People can be mean and some will never understand. Forget it. Stick with the people who support you and love your child no matter how nuts it is at times.

3. Reach out. There’s an incredible community, and we all need each other. Take help from those who are farther along in their journey, and help those who are beginning theirs. We’re all in this together.

4. It’s OK to take a break. You will need it, and it will make you a better parent and a happier person.

5. Stick together as a family and don’t leave your typical kids behind. They need your love and support too. Be a family with equal and mutual support.

6. Be grateful — no matter how long some days are and how tired you sometimes get. This special, crazy, incredible child will make you a better person. The best version of yourself.

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Me and Shea on Halloween

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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I Wish I’d Known This About My Son With Down Syndrome From Day One

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If I knew I was going to pump for a whole year, I would have bought a hands-free pumping bra.

If I knew my son, Ben, was not going to need heart surgery before he turned one, I would have worried less.

If I knew I would only hear congratulations and love for my sweet boy from friends and strangers, I would have spent less time thinking about how to defend him.

If I knew how quickly that first year would go, I would have shut the computer more and spent more time with all three of my kids.

If I’d known the dozen local families, online community and resources available to me, I would not have felt so lonely.

I think back on the last year, and I think about all the things I did wrong. I let Corrie and Evan watch way too much TV. I spent a lot of time online. I neglected my home. I didn’t stimulate Ben enough. I didn’t put his hip helpers on as much as I should have. I wasn’t patient with my family.

And I try to give myself a break. Honestly, it was a shock when Ben was born with Down syndrome, even though the risk (according to the quad screen) was 1 in 19. I didn’t do any research beforehand; I just figured we would cross that bridge when we came to it.

So then, when we did cross that bridge, I felt a lot of fear and worry. I held Ben in my arms and felt protective. I felt like this little baby needed me to shield him from all that life was going to bring.

Little did I know, Ben would be amazing. His smile would light up a room. His brother and sister would adore him. Our family, church and friends near and far would delight in him.

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Little did I know that he would be my easiest baby. He would sleep through the night at one month old. He would drive with me from home to preschool to soccer practice to a doctor appointments with (mostly) a good attitude. He would be a champion snuggler.

If I had known that Ben would be… well, Ben… I would have done a happy dance around the hospital room.

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This post originally appeared on What a Team!

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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When I Questioned If My Son With Autism Could Show Kindness

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I recently entered a short essay in The Mighty’s thankfulness challenge. It received a whole lot more attention than I ever dreamed it would when a representative of People magazine saw the story and called. My essay described some children who have been exceptionally kind to my son, Tate, and I thanked these kids in a public way. Tate has autism, and it’s hard for him to make friends for several reasons, one being that he just doesn’t understand how relationships work. Tate doesn’t understand social reciprocity, but he’s making some great gains due to constant and consistent teaching from home and school. A lot of that teaching has come from his peers. They’re teaching him about friendship and kindness. I wanted to spotlight those kids for their kindness to Tate.

Kindness. Most of us know what it is, even at a young age. It doesn’t have to be defined in words; it’s taught by example. Kindness doesn’t just come naturally to small children. There are always exceptions to the rule, but most children are a reflection of their upbringing. In my experience, usually, the kindest kids have the kindest parents.

unnamed (85) Tate has been blessed with many kind classmates, and a few of them have even taken a special interest in him. They eat lunch with him. They go out of their way to speak to him and consider him a real friend. If I had to describe these kids in one word I would probably pick, “kind.” So, today when I got a message from a representative of “Newton Kindness” saying two of Tate’s lunch buddies were nominated for a kindness award, I was thrilled! But as I read on, I saw that this representative also wanted to nominate Tate, and that left me slightly confused. Tate has been the recipient of his peers’ kindness but had he ever really shown kindness to them? He has autism, after all. I thought about it for a few moments. Tate is a good kid. He doesn’t make any trouble. He’s quiet. He’s not demanding or mean-spirited. But, would I use the word “kind” to describe Tate? It only took me a minute or so of pondering; I realized I’d given the word kindness a small definition. Because Tate cannot do so many things that the rest of us can, he doesn’t always show kindness the same way the rest of us do. Tate cannot show kindness by being a peer model for a classmate who’s lacking in social skills, but he’s a kind young man. He demonstrates it every day. He gives without expecting anything in return. He forgives easily when he’s been wronged, and it takes a whole lot to make him angry. His lunch buddies have described him as a good friend who likes everyone.

It’s taken Tate a lot of hard work to get where he is. If you can liken learning social skills to learning to swim, think about taking those swimming lessons in a calm, heated, indoor pool with instructors and floaties. Then think about taking those swimming lessons in a muddy, cold river with a strong current and an instructor who’s speaking a language you don’t understand. It would take so much longer to learn to swim if you didn’t have all the support. When a child with autism is put into social situations they must feel like they’re in that muddy river trying to learn to swim against that current. I’ve been on the sidelines shouting encouragement, but I must have blinked and missed the part where Tate learned to “swim.” His biggest encourager sometimes doesn’t see the little milestones.

After my lightbulb moment, I was a bit aggravated that I’d even needed a minute to ponder whether or not Tate could be described as kind, because just last month he’d shown me just what kindness really looks like. I took Tate Christmas shopping. He had less than $20 — he’d earned one dollar at a time by doing one of the only jobs he’s mastered: unloading the dishwasher. He was on a mission! He wanted to buy mistletoe and a gift for his brother, Levi. As we shopped and talked, he added to his list. He wanted to find something for his three sisters as well. Have you ever tried to shop for four people with$20? We got everything he wanted except the mistletoe. I have no idea where to find mistletoe. I quizzed him about why the mistletoe was so important. He finally revealed to me that the mistletoe was going to be his gift to his dad and me. Tate planned to put it up so we could kiss underneath it. I was so touched and tickled at the same time. It took him over two weeks of emptying that dishwasher (which is not a preferred activity) to earn enough money for those gifts, and he never batted an eye about spending it on others.

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When I Heard the Word ‘Autism’ I Only Knew Stereotypes. Here’s What I Know Now.

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“I’m 100 percent certain she’s on the autism spectrum.”

As the doctor said the words, I felt her eyes on me, waiting for a reaction. Instead I found myself sitting perfectly still with a smile frozen on my lips as I watched her play with my 3-year-old daughter.

We were there because Mae had been having stomach problems and seemed to be in pain. When we’d walked in the door it’d seemed like a minor appointment. I wasn’t even sure if we should be there, but it had been going on for a while, and when I called they told me to bring her in.

I didn’t realize that before we walked out of the tiny exam room, I’d hear words that would rock the foundation of our little world.

Autism. I knew stereotypes. I knew nothing.

We stepped outside the doors to find that the world hadn’t come to a screeching halt because of our news. I called my husband. I called my mom. I called the number the doctor had given me. They could see us next week.

In the days that followed I began to keep a list of things to talk about at our appointment. What worries did I have?

Well, she was 3 and didn’t speak. When we were outside, if I let go of her hand she would start to run… and run… and run… without looking back. I was terrified of losing her. She was fearless. She climbed everything. We’d built special baby gates to keep her off the stairs. One was five feet high. It took her about ten seconds to scale it. One day I came into her room to find her hanging from the curtain rod, smiling at me. Oh… and she didn’t seem to feel pain. She’d run into another child while swinging high on the swings at the park and had been thrown a good six feet. My heart was in my throat as I ran to her, but she jumped up and started to giggle before I reached her.

The tests came and went in rapid succession.

I waited for the call that promised to tell me her results. When it came I was standing in the kitchen making lunch. She qualifies for therapy, the voice told me. What’s that mean? I asked. She was undoubtedly on the spectrum, they said.

I leaned against the counter and thanked the person on the other end of the line for delivering the news.

I’d known. But knowing deep down and officially being told are two different things. Suddenly the unknown loomed, larger than life.

People told me nothing had changed. I knew what they meant. My daughter was the same little adorable ball of energy she’d always been. But at the time it felt like everything had changed. I was an introvert, a homebody and suddenly we had doctor appointments and therapy sessions six times a week. What would the future hold?

Fourteen months have passed since we received her diagnosis. Sometimes it feels like no time at all, and sometimes it feels like a lifetime. I still don’t know what the future will hold for us. But that’s OK. No one does. I’ve learned a few things though, since the doctor first said those words that set us off on this path.

If I could go back in time, I would tell myself that it’s going to be better than OK — that it’s going to be amazing. I’d tell myself that there will be days that seem to stretch on forever, but that there will also be days when your heart will feel like it’s going to explode in your chest because you’ll appreciate the wonder of the simplest moments in ways that you never knew were possible.

When she looks at her newborn baby brother and says, “love, love, love” over and over again while touching his cheeks, his mouth, his nose with careful fingers, you’ll savor every touch, every word. When she holds your hand as you’re tucking her in and says, “Happy. Mama.” your heart will overflow with the wonderfulness of the moment.

You’ll also learn that words aren’t the only way to communicate and that sometimes they aren’t even the best way. A word, look, a sign, a gesture — life and the way we communicate will take on the richness of a sort of dance.

If I could tell myself one thing, it would be that you’re going to do so much more than survive. You’re going to love and laugh. And perhaps most of all, you’ll learn that the ordinary will take on an added sweetness and become extraordinary as the smallest moments take on the luminous glow of a hard-won triumph as you watch her grow into the person she is meant to be.

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Follow this journey on A Woman’s Place

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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The Mantra I Adopted When My Son Was Diagnosed With Autism

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DSC_0335bw If I could go back to the day my son was diagnosed with autism, I would tell myself the following things:

1. There will be plenty of time for crying later. For every time he says a new word. For every time he points at something and looks at you for approval. For when he leaps into your bed in the middle of the day and snuggles with you and whispers “Good night.” For every trip to the beach or the pool, when you see the look of pure joy on his face while waves crash over his legs or as his kicks create a wake of chlorinated water behind him.

2. He’s still your perfect little boy. A diagnosis doesn’t take that away from you.

3. It’s not your fault. You didn’t do anything wrong. Because there is nothing wrong with him. He’s who he is. Because even if he flaps his arms and chews on his fingers and walks on his tiptoes until his last days, he’s perfect just the way he is. Let him be who he is, and don’t try to make him into someone he isn’t and cannot be. By all means, help him — provide him with the tools he needs to be his best self, but at the end of the day, accept him.

4. Buckle up, sister. You’re about to become a strange hybrid of a stay-at-home mom/special needs advocate/occupational therapist/physical therapist/speech-language pathologist/special educator. It’s your job to make sure he’s balanced, happy and fulfilled and that all of the therapists and professionals involved in his well-being and education are on the same page as you. Sometimes that means taking matters into your own hands — especially during those long spring, summer and winter breaks from school. Sometimes that means creating living room obstacle courses or bouncing your boy on the couch as you recite the ABC’s, holding him under his arms as you lift him up again and again only to toss him into the stacked cushions at the end of each verse. It’ll keep you young, and your arms will be ridiculously toned. Ah, there’s that silver lining!

5. Invest in lots of carpet cleaner and bubble bath. Life is going to be messy!

6. Your mantra will soon be “Tomorrow is another day.” You’ll say it as you sing a lullaby to your little guy, his sweet smile lighting up the dark room, the air still thick with the day’s accomplishments and progress, as you envision the next day’s triumphs. You’ll say it as you tuck in your exhausted, emotional preschooler, as your tears commingle with his, both of you drained and frustrated and ready to give up and throw in the towel completely. It’s a bit dramatic and Scarlett O’Hara-ish of you, but it makes you feel better knowing you can wipe the slate clean and try again the next day. No one is perfect — the key is that you keep trying. And trying. And trying.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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Watch Celebrities Stammer Through a Tongue Twister to Support a Girl with a Rare Skin Condition

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Sohana Collins, 12, has Epidermolysis Bullosa (EB), a rare condition that causes her skin to burn and tear at the slightest touch, according to Channel 5 News. She experiences unimaginable pain; small cuts or bumps can quickly become blistering third-degree burns, and without eye drops, the surface of her eyes could be torn. 

“To see her do something really normal without pain would be absolutely incredible,” Sohana’s mom, Sharmila, says in the video below.

There’s currently no known cure for EB, but Sohana’s family in the UK has already helped raise £2,000,000 (more than $3,000,000) for research. Now, several notable new faces are backing their cause. Sharmila reached out to “Homeland” actor Damien Lewis, who not only agreed to support the charity but offered an idea to raise awareness for Sohana’s condition by filming himself blundering through a tongue twister. Since then, Sienna Miller, Benedict Cumberbatch and Emma Watson, among others, have supported the campaign on social media.

Learn more about Sohana’s condition and watch these celebs tackle a tongue twister to support her cause in the videos below.

 

To learn more about Sohana’s story, visit the Sohana Research Fund or search the hashtag #EBtonguetwister.

h/t Faithit

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