3 Surprising Ways Strangers Have Reacted to My Son With Dwarfism

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My son’s blond hair and hazel eyes are not his most unique features, though quite special. His beautiful smile, captivating everyone, is not what sets him apart. My son’s dwarfism is what people notice when meeting him for the first time. I welcome each encounter hoping to share the miracle that is my son.

Here are a some memorable moments that especially stand out to me.

1. A Surprise Question:

“How old is your baby?” the nurse asked.

I winced at the word, baby.

Mmm, how should I answer? I’ve come to the realization that being direct is the best method. I used to answer with just a number, not mentioning whether it was in months or years. I thought being elusive was the best policy, but then I’d see a look of confusion and I’d end up confessing my son’s true age.

You see, my son has a rare form of dwarfism called thanatophoric dysplasia. At 10 years old, he is 25 inches long and weighs in at around 20 pounds, give or take depending on how much cereal he eats. He has the face of a young boy but the body of a baby.

We were at a restaurant in Charlotte, North Carolina when a waitress asked about our son’s age. We both paused and then my husband asked, “How old do you think he is?”

She looked at Samuel, silent for a moment. “About nine months old.”

We both smiled. Instead of leaving the conversation there, my husband began to share what a miracle our little boy is overcoming a “not compatible with life” diagnosis. We shared how he wasn’t expected to live past birth, his months in the hospital and how we were blessed when he was able to come off his ventilator.

2. A Surprise Smile:

Recently, as I was entering the grocery store, I was following several steps behind my husband as he pushed my son in the stroller ahead of me. A young lady with silky brunette hair was leaving the grocery store. As she passed the stroller, she tilted her head back to look at my son. I then saw her face light up with a brilliant smile. I tucked her response in my heart.

We didn’t get to tell her she just saw a miracle, but her response really touched me.

3. A Surprise Reaction:

At a local restaurant, we followed the hostess to a booth. As we passed another table, my son’s eyes mesmerized a tall blonde eating her meal.  After we finished our meal, I asked to pay the tab and was informed the bill had already been paid. Seeing my surprise, the waitress pointed to the blonde. I went to her table and thanked her for the kindness. She proceeded to tell me how my son captivated her as we passed her table. We exchanged emails.

I received this email from her the next day. “I saw everything that was important in his eyes when he first looked at me and I have never experienced anything like that in my 48 years. I was supposed to meet Samuel and when he left, I had something from him….courage. I have been afraid of making changes, taking initiatives, loving, and the list goes on. I was up all night thinking about what you had said to me and reflecting on the look I received from Samuel. It may sound a little nutty, but he is the angel I desperately needed to meet.”

I treasure how my son moves the hearts of those he meets. As our son continues to grow, very slowly, we’ll continue to receive a variety of reactions from the public.  And as we do, we’ll continue to share our miracle, and hopefully he’ll continue to inspire others.

Follow this journey on Miracle Mann.

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To My Daughter With Autism, From Your Proud Dad

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Daddy wants to write you a letter and say thank you.

Thank you for asking questions.

Thank you for adapting to and embracing your autism diagnosis.

Thank you for being proud of who you are.

Thank you for teaching me to see the world differently.

Last weekend we played together in the city — thousands of people around, noise, lights, sand. It was hard for you. We held hands and embraced this adventure together. Remember the fun we had? You controlling the fireworks and swimming at the beach. We walked through the shops and enjoyed plain cheese pizza for dinner.

You wore your headphones and brought sensory toys to help when you became overwhelmed. I’m proud of you for trying new things. I think it helped you heaps.

You make my days fun, princess. I go to bed each day not complaining about the lack of sleep, a new stain on my floor or even that a week’s worth of groceries was used in the backyard for play.

I fall asleep grateful — grateful my life is full of adventures, laughing and sneaky cuddles. The cuddles are my favorite. Thank you for random cuddles; I know you don’t like them too much, but they are so special to me, and I treasure each one.

Thank you for constantly trying. We know that going outside is hard, reading people is hard and living with five others at times is hard, but we tackle this together.

This year has been busy, and you’ve been bombarded with doctors, therapy sessions, medication and routines. It’s been exhausting and tough, and we both wanted to quit, although nearly one year on we are both stronger. Home is a safe place, a place it’s always OK to experiment, test theories and if needed, melt down. No judgment there — just unconditional love and acceptance.

I remember your plan at your new school. You made up a way to explain your autism to your friends. At the point of introduction, you apologized and stated you might say things that may upset them. “I’m loud and sometimes can be rude.” I was so proud; that was a very grown-up decision to make. Did you notice this choice has made school so much easier this year and you have so many friends? Well done!

Lastly, thank you for the laughs. You make me laugh every day. You’re literal; you see the world your way.

Keep trying, keep dreaming and keep proving the others wrong.

Love you sweetie,

Dad

Follow this journey on My ASD Princess.

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Kids Made Fun of Her Brother With Autism, So She Wrote This

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When 7-year-old Paige Morgan heard kids making fun of her brother Adam, who has autism, she didn’t lash out. Instead, she went home to her mom, who helped her realize this was an opportunity to educate.

“I just said that I didn’t think the kids really knew what was going on, they were 7 years old… and I thought this was a good teachable moment,” Rachel Morgan told KMOV. “So I said, ‘You know honey, I could come in and talk to the kids, but I really think it would be better if it came from you.’”

After speaking with the kids, who responded positively, Paige set out to find a book to further explain her brother’s differences. And when she couldn’t find one, she decided to write her own. Paige, now 9, wrote the intro for “Building Forever Friendships: Strategies to Help Your Friend With Autism and Other Special Needs in School,” which her mom penned.

The book, available here, is already being used in classrooms to teach kids about autism.

“It warms my heart, as the author and a mother, that this book has promoted great heartwarming discussion amongst our children and teachers to better understand and accept everyone for who they are,” Rachel Morgan wrote on Facebook.

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How Opening Up About My Autism Brought Me New Life

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I’m coming out of the closet to every single one of you today. It might not be the “out of the closet” you expected, but it is my puzzling and unique autism closet, filled with memories, drawings, writings and deep miscommunications.

I am bursting out, swinging open the door loud and proud, with all of the quirks, complexities and traits that make me the person I am today.

Let me tell you, it wasn’t always this way. Disabilities like autism often are viewed in our world as things of which to be ashamed or to hide.

Think about your previous interactions or experiences with people with disabilities. Maybe you pitied a kid in a special education class, bullied someone, felt uncomfortable during a conversation or thought it was the kind of thing your parents might see sensationalized on “Dr. Phil.”

These all seem like valid reasons for someone to keep an autism diagnosis to him or herself, or to be shared and discussed in hushed tones on a discretionary basis.

Most likely, this diagnosis is shared only with family members who have been there every step of the way since hearing the fateful words, “Your child has autism.”

On the contrary, I feel it is my duty to hold my head up high and embrace my autistic identity.

The Center for Disease Control estimates that one in 68 children has been diagnosed with an autism spectrum disorder. That’s a lot of future adults to be hiding in the same closet I’ve been in, whispering the A-word like it’s a death sentence.

I did it for most of my life, and didn’t embrace autism enough to shout about it on social media or even to close friends. I wanted to pass as normal and not be judged. I didn’t want to be labeled autistic; it was easier to tell people I was just shy or quiet.

In a culture that values norms and conformity, I wanted to be socially accepted without being too different. I was afraid of being judged, being ridiculed or treated differently. There came a point I realized I had no choice but to be honest about my journey as more people embark on similar ones.

Without further ado: I am Haley and I am autistic. I actually came out of the autism closet back in high school at the tender age of 14, but only meekly after being put on the spot by my English teacher.

At 20, I can tell you that being different is awesome. I love being me; I love being a self-identified introverted creative type with a misunderstood mind that misses out on valuable social cues and exotic foods. I love being one of the most socially awkward people you might ever meet, but I am also one of the most honest.

I might hit developmental and societal milestones in a different order than my peers, but I am able to accomplish these small victories on my own time.

Coming out of this closet has been liberating and thrilling. If I were not autistic, I wouldn’t be where I am today.

I would not be the author of two books, I would not be a guest lecturer, I would not have such authentic friendships built on honesty and trust and I would not know how great success truly feels without the level of challenge I have experienced.

There is something extremely comforting in knowing I do not have to hide who I really am to the world and pretend to be an actress on the grand stage of life. This experience of coming out of the autism closet has not been perfect, however. There are lots of downfalls to it, too.

I have been discriminated against, asked inappropriate questions, told I was jumping on the diversity bandwagon and called names. I don’t want to focus on these injustices today. I’m not here to tell you I’m awesome, but that I feel awesome to have this fierce self-acceptance thing going on.

In turn, you shouldn’t feel bad for me because the word “autism” is branded on my identity. I am stronger than the negative perception of autism that is out there, and I am damn proud of that.

This post originally appeared on Elite Daily.

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When You Lose Someone Who Was Your World

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When you lose someone who means the world to you, when you lose someone who was your world, there is so much that happens. And there are the little things and even the big things you expect… and then the little and big things you don’t expect.

No one tells you that you never stop opening the chat window. No one tells you that you never stop logging on, expecting to see a message. A post on your wall that will make you laugh. It’s gone.

No one tells you that you never stop picking up your phone to send a text or a Facebook message.

No one tells you that the words “Let me know if you need anything” can mean literally nothing. We don’t know what we need. Sometimes what we need is a message saying, “Hey, can I come over?” And sometimes we want someone over. But it doesn’t mean we necessarily want to talk. Maybe we just want someone so we’re not alone. So we’re not without people. We need people… but sometimes we need people while we’re alone. We need someone just to sit with us, who is there if we suddenly pipe up with something, but who is also just there in the silence.

We need someone who is OK if we sent a frantic text or Facebook message at whatever a.m. It’s OK if you don’t read or respond; don’t feel you have to. But we need someone to share our pain with.

No one will replace the person we lost. Nothing can ease our pain. I don’t believe grief ever goes away. Instead, I believe it changes. It grows with us and it becomes a part of us.

I truly believe people mean the best, but no one tells you how much it f*cking hurts when people say, “Oh, I know exactly how you feel.” No. You. Do. Not. You did not have the same relationship I did. You did not lose the same friendship I did. We lost the same person and we’ve both lost loved ones, but you have no idea how I feel. You can relate. You can feel similar. But you have no idea exactly how I feel, and those words hurt so much.

What no one tells you is how lonely grief is. That it’s the moments you least expect it is when you are blindsided by it. That when you’re walking home alone from the grocery store at midnight, it’s when the tears fall. When you’re on the bus and you see something hysterical that you’d text them, it’s when the familiar salty feeling overwhelms you.

Grief is forever. It becomes a part of you. No one tells you that. You expect that in time, you will get better. I don’t believe you do. I believe as you approach your new normal, you change. But grief is the price of love — and it’s worth it, I think. I think love is the greatest  gift you can give anyone. And in a way, I think the grief and pain is that final gift you can give them. For it means that your relationship meant something — to both you and to them. It means their life meant something to someone — to many someones — to countless someones. And that’s what matters. That’s what love is.

Follow this journey on A Heart Made Fullmetal.

Lead photo source: Thinkstock Images

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When People Think I’m ‘Sensitive’ About My Child With Special Needs

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“I know how sensitive you are about these things.”

Ouch. It was a comment made in an attempt to be sensitive to my feelings, but it felt like a punch to the gut.

“These things” she was referring to happened to be people leaving out, discriminating against, bullying or otherwise hurting my son, A-Man.

I get a bit sensitive when my other son, Mr. C, is invited to a play date for the fourth time in a row without A-Man.

I get a bit sensitive when people imply I should avoid having more children with special needs.

I get a bit sensitive when someone asks me why my son doesn’t play like a “normal” kid.

I get a bit sensitive when people criticize me for feeding my son foods he will eat instead of forcing food he can’t tolerate.

Yeah, I guess she was right.

A-Man is routinely left out because people won’t make an effort.

I’m not ignorant. I know it can be more challenging to take a child with autism to the park than to take a child without any special needs. I know when family and friends want to take Mr. C for a play date, they just need to buckle him in the car and let him play, while taking A-Man requires pull-ups, pre-planned snacks and handling potential meltdowns. I know Mr. C can easily listen when someone tells him to stop playing with something, while A-Man can easily become fixated on something (and it’s usually something he shouldn’t play with, like cords and wires).

But I also know it doesn’t take that much effort to make something work for A-Man. Pack some extra baggies of goldfish crackers, give him some time to adjust to new surroundings and he will have just as much fun as Mr. C almost every time. There are some events A-Man truly can’t handle, like spending the night somewhere new or going to Chuck E. Cheese, but those are the exception and not the rule. So yes, when A-Man is left out of an outing or event he would really enjoy simply because it might take a bit more effort, I’m sensitive about it.

People say terrible things about others with special needs without realizing.

I know in this day and age, it’s nearly impossible to say anything without offending someone. I believe that’s especially true in the special needs world. It feels like if I say A-Man is autistic I might offend roughly half of the population, and if I say he is a boy who has autism I might offend the other half. I tend to give people the benefit of the doubt, especially if they don’t have any reason to understand children with special needs. I do realize most people are not intentionally being cruel, but sometimes it gets really old. When someone asks what’s wrong with A-Man or says something like “my child would never still be in pull-ups at 4,” I get a tad sensitive. Right now A-Man doesn’t understand cruelty, which I’m incredibly thankful for, but one day he will. I will not allow people to insult him no matter how sensitive that may make me.

Being a special needs mama can be hard.

This is probably the biggest reason I’m sensitive. Between the pull-ups, meltdowns, food sensitivities, therapies, specialists and 947 other things we deal with every day, we honestly don’t have the time or energy to deal with people being terrible to/about us or our kids. We are tired and overwhelmed. We get overly excited over small victories, like a trip to the grocery store with only one meltdown, and we can get easily upset by difficult setbacks. When you heavily favor our kids without special needs over those with, or you make nasty comments about our kids or our parenting, it adds another thing to our already heavy load.

So friends, we know you aren’t trying to be cruel, and please know we’re not trying to be overly sensitive. Most of the time, we are just sensitive for our kids with special needs because we have to be. The world isn’t always sensitive to them and their needs, so it hopefully isn’t too much to ask for our friends and family to be a bit sensitive to our needs.

Follow this journey on This Outnumbered Mama.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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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