9 Things Autism Parents Want the Rest of the World to Know

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The word autism entered my heart as a whisper. It later entered my brain as a possibility. Later still, it entered my life.

I worried, bought a book on autism, devoured it and then felt like that must not be what my son has. He was nothing like the boy in the book. Maybe he just has a language delay, I thought. I waited for him to start speaking more. For him to start playing in the way that he was supposed to play. He did play, though unlike the boy in the book, so certainly, his issues were different. I stopped worrying about it. Sure, he ran laps around the house. But only when he was tired. Don’t all kids do that? Don’t they all twirl their hair, around and around and around, while drinking a bottle?

I’ve mentioned before that parents and friends assured us that Tucker would catch up, and that his delays were likely due to me being at home with him as a baby. They were wrong. But what did I know then? I had no other child in the house to compare him to. He loves to snuggle, and, from what I’d read, autistic children don’t. He looks at me in the eyes. I’d already learned from Dr. Google that children with autism don’t make eye contact…

This photo was taken four years later. Does Tucker look like anything other than a little boy having fun in the snow?

My point is, autism doesn’t look like anything but the way it looks. It doesn’t look like “Rain Man.” It doesn’t always include hand-flapping, rocking or issues with language. Sometimes it does. But sometimes it doesn’t.

9 Things Autism Parents Wish You Knew:

1. People don’t need to feel awkward when they’re around my son. Yeah, they may need to treat him a little differently, but I wish they wouldn’t be weirded out.

2. Not all autism is the same. People seem to think that because my son isn’t like the one single other person they know on the spectrum, that he must not be autistic.

3. These kids love. They need love. They are wonderful and bring enormous joy and laughter to those who love them.

4. Please don’t tell me my son doesn’t have it because he looks so different from the other kid you know on the spectrum. Knowing one child with autism doesn’t mean anything really — they’re all so different.

5. Kids with special needs are smart, talented, creative and thoughtful. It may not be obvious all the time — their minds work differently.

6. If my daughter is making strange noises, feel free to look. She’s just excited. But please don’t stand there and gape at us with your mouth hanging open.

7. If you see my son in a grocery store, he may be head nuzzling, chewing on the corner of his shirt or spinning. He’s anxious. I will not scold him, so please do not look at me as if I should. He can’t help how his body receives stimuli. He is trying to cope with the way he’s affected by his surroundings.

8. From onlookers who think I am not addressing my child’s odd behaviors: I ask for a little empathy. Don’t judge. Try to understand that his environment strongly affects him.

9. Please accept our kids the way that you assume we will accept yours.

I think I’m speaking for all of us when I say that what we really want you to know is that we, as parents, are both terrified and brave. Just like you.

That while our children may act differently from what you’re familiar with, they are our normals. That they’re full of fierce love, tender hearts and hope.

Hope.

Our special needs kids are here, on purpose and out loud. Even when they’re silent.

A version of this post originally appeared on Finding Ninee.

The Mighty is asking the following: What’s one moment you saw your child’s disability and/or disease through the eyes of someone else? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why I Medicate My Son Who Has Autism

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My 10-year old son has autism. And we give him anti-anxiety medicine every day.

If someone had told me 15 years ago — back when I was a smart, chic, kind of fit 20-something newlywed — that my new husband, Joe, and I would one day give our child a tiny white pill every night, well, I might have laughed.

I mean, people who medicate their children are lazy. Everyone knows that. They turn to pills and syrupy liquids because they don’t feel like trying anything else first. We live in a society dependent on pharmaceuticals, and parents who give their kids medicine are one more step in the pill-popping downfall of our culture. It is the easy way out.

Well, I can tell you that it wasn’t easy. But it was a way out.

Here is what I know about anxiety: it is interruption and interference. It is intrusion. It is an insidious, slithering snake. It is barking dogs and static on the radio and nighttime waking and middle-of-the-day wetting.

It is fear. It is irrational. And it ruthlessly stalks my son.

Jack’s anxiety first started in the spring of 2011, when he was 6. It was like being hit with a ton of bricks — he was here one day and gone the next. One day, we had a mildly repetitive, somewhat obsessive little boy, and then he woke up the next morning and started talking to himself and mumbling about wanting to eat his friends and screaming that the wind chill factor was going to make him die. He kept saying babies were going to paint him blue.

He was afraid to go to the bathroom. He was afraid to go outside. He was afraid of dogs and stop signs and orange things. He stopped sleeping and he never, ever smiled or laughed.

Joe and I were completely blindsided. We had no idea that anxiety is autism’s sneaky sidekick, that the two travel in pairs like partners in crime. But then again, we thought Jack would outgrow his spectrum disorder diagnosis by kindergarten, so really, what do we know?

We bought a weighted blanket because all the research said weighted blankets are great for reducing anxiety. It didn’t work.

We re-painted the room he shares with his three brothers a deep, rich navy because we hoped it would calm him, and make him feel as though he was in a soothing cocoon during the night. It didn’t work.

We tried the Wilbarger brushing technique. We bought a huge box of these white, soft brushes that fit in the palm of your hand, and a dozen times a day we would lightly stroke his limbs and his torso. He loved it. But it didn’t work. And after a few weeks his younger brother, Henry, started using the brushes to comb his hair.

We did joint compression and massages, breathing techniques and a low-sugar diet. None of it worked. Still Jack was terrified of the wind chill and babies painting him blue. Still, he talked to himself and asked to eat his friends and lurked around the corners of the house like a stranger within our own family.

Maybe the worst part was Jack couldn’t even explain what was happening. Over and over we begged him to tell us who he was talking to, why he was so afraid, how to make him feel better, but he could not ask for help. It was as though he was locked in his own psychological prison, without so much as a file in a cake to break out. I wept every day.

After two months, the doctor gently suggested it was time to try medication, and so we did. And it worked. Slowly, Jack returned to us. Slowly, he smiled when he saw his favorite cartoon and stopped having accidents because he was afraid of the water in the toilet. He didn’t shriek and cover his ears when he saw a baby in a stroller.

That was four years ago. We never once changed the prescription or the dosage, even though Jack is a good 40 pounds heavier and at least a foot taller. Then last summer, we decided to stop it altogether.

But over the past two months, Joe and I have noticed some changes, some differences in Jack’s demeanor and movements.

You know when you’re wearing a shirt that doesn’t fit quite right? Maybe the sleeves are too short or the fabric is too scratchy. And for the entire day, this shirt nags at you. You can’t concentrate. You feel irritated and all you can think about is taking it off the second you get home. That’s exactly how Jack looks. He looks like his shirt doesn’t fit quite right. Only instead of a shirt, it’s his skin. And he can’t go home at the end of the day and take it off; he has to wear it for his whole life.

He talks incessantly about getting stuck in a time machine. He’s afraid he’ll be transported back to colonial times and the time machine will break or he’ll forget how to work it and he’ll have to stay there without us.

He won’t go outside because he’s afraid he will fall down in the snow and not be able to get up. And when we tell him he will be able to get up himself, and if he isn’t he can call us and we will help him, he insists we won’t be able to hear him.

He can’t perform the simplest, everyday task — things he used to do easily, like brushing his teeth, pouring his own cereal, taking his homework out of his red backpack — without screeching about how he can’t do it, it’s too hard for him, he is scared.

He fidgets and he twitches and he wrings his hands all day long. If he’s sitting, he bends over at the waist and rubs his palms down the length of his thighs. He doesn’t smile easily, but every so often he laughs maniacally at a joke no one in the room has told. He talks to himself. He is not sleeping. He is afraid.

His prison is back.

This time, there are no more rooms to paint. Jack can’t stop jumping and flapping long enough for us to use the brushes, and he complains the weighted blanket is too hot.

When you live alongside autism, there are a lot of firsts — momentous milestones we never thought we’d reach. And every once in a while, I to like take them out and hold them up to the light like rare, precious jewels: His first word. His first sentence. His first real two-armed hug, and the first time he ate a piece of salmon. The first time he lost his smile. The first day he got it back.

And then, about a week ago, the first time he asked me for help.

“Please be next to me. In this bed. I can’t stop it for thinking about the time machines.”

If I had my own time machine, I would travel back to my young newlywed self. I would loop my arm through hers and bend my head close. And I would ask her not to judge her future, because she has yet to walk in her own shoes.

She has yet to meet a tender, precious, funny boy named Jack. She has yet to imagine the rich, dusty purple of a Saturday or Sunday morning’s brilliant yellow. She has not yet held the fate of a child’s joy in the palm of her hand like the most fragile, breathtaking butterfly. She has yet to hear the softest, saddest whisper in the silence of a navy blue room.

“My brain. My brain. It is moving fast. It feels not right.”

She has yet to try and melt his snow.

We have refilled the prescription. And two nights ago, I shook the small amber vial and gave Jack his first tiny white pill. I watched him drink it down with a mouthful of water. And then I prayed.

I prayed it would help bring him home, just like it did the first time.

This post originally appeared on Carrie Cariello’s site.

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Your Hidden Power When You Have a Sibling With Special Needs

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As the sibling of someone with special needs, it is common to feel overlooked within your own family. However, if you choose to consciously and deliberately re-shape your focus, instead of lamenting about the ways things should be, you will come to learn what you are truly made of.

You are not a typical sibling; you are a parent-sibling hybrid. As a result, you are on the fast track when it comes to psychosocial and spiritual development. While your peers are busy being children and adolescents, you will always carry a greater responsibility. At times, you may even envy other children’s carelessness. Be that as it may, if you refocus your mindset, be more compassionate and press on, the additional weight that you carry will only give you very broad shoulders.

You come to know the many shades of complex grief at a very young age. Always commit to allowing love and compassion in to irrigate these wounds, knowing that at first it stings, but it is the only way to truly heal.

Remember that you aren’t alone. Considering your role as caretaker, the last thing you are comfortable with is allowing others to help, but there are many people who can relate. You will find the discovery of common ground and sharing of experiences to be of great comfort on this journey.

down syndrome the mighty

You are an artisanal blend of grit and compassion. This is rare, sparkly and intense. Use this power wisely.

You are sharply tuned in to the needs of your special needs sibling. Your radar is set to pick up on the frequency of ignorance and to protect your sibling from the unfairness in this world. As a result, this love and protective instinct extends beyond your sibling to also include those who are marginalized, without a voice or in need. This compassion is an asset.

Your bond with your special needs sibling is beyond anything you will experience with anyone. Period. You are the translator, the protector, the caretaker, the nurse, the clown, the best friend and more. Exhausting? You have it in you. Trust me.

Nevertheless, your heart breaks every day. It breaks because it wasn’t you and because you cannot fix it, even if you know that nothing needs fixing. When you see someone who is like your sibling, you burst with joy and then your heart breaks for them and everyone like them.

At each milestone in your own development — your victories, celebrations and graduations — you will inevitably feel as if you are leaving your sibling behind a bit further. This is when that complex grief taps you on the shoulder to let you know that it is still there, standing on the edge of the dance floor, reminding you that in the silence of the evening’s end it will follow you home. If you can hold its hand, instead of running from it, it becomes a less daunting companion.

Your sibling has given you so many gifts: patience, compassion, awareness, mindfulness, a sense of humor and a greater capacity for love. Some people search their entire lives for such richness and depth in a relationship. Some never find it in this life. Your sibling will teach you so much if you slow down to watch and listen closely. Remember to keep your heart open. We never learn to love more deeply from experiences that are easy, and loving more deeply is what it is all about.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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 Clothing Line That Lets You Know It’s OK to Talk About Mental Illness

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Wear Your Label is a clothing company that aims to generate discussion around mental health and “ultimately end the stigma (in style).” The fashion line includes hats, T-shirts, tank tops and bracelets that feature slogans like, “Sad but rad,” “Stressed but well-dressed” and “Self-care isn’t selfish.”

View More: http://mayasherwoodphotography.pass.us/wylsummer

View More: http://mayasherwoodphotography.pass.us/wylsummer
Photo credit Maya Sherwood

Kayley Reed, 21, and Kyle MacNevin, 22, both from New Brunswick, Canada, cofounded the clothing company in July 2014. The two University of New Brunswick students came up with the idea after working together at a local mental health organization and subsequently bonding over their own mental illnesses. Reed is recovering from an eating disorder, and MacNevin has generalized anxiety disorder and ADHD.

“Before starting Wear Your Label, I was not open about my mental health issues at all,” Reed told The Mighty. “It wasn’t until I met Kyle that I realized how impactful it can be to share your story.”

View More: http://mayasherwoodphotography.pass.us/wyl
Photo credit Maya Sherwood

Reed and MacNevin draw on their own experiences with mental illness to develop the empowering expressions on their designs. They then screen print the slogans onto the clothing in their studio — something Reed says was important to her and MacNevin to do themselves.

“It adds another layer of meaning to the clothing,” she told The Mighty. “When you get this clothing, you know it was made by someone who’s going through something similar to what you’re going through.”

View More: http://mayasherwoodphotography.pass.us/wyl
Photo credit Maya Sherwood
Credit- Hanna Walters
Photo credit Hanna Walters

Reed said she hopes someone who sees another person wearing Wear Your Label clothing will instantly feel safer and more empowered to share how they feel — something they may not have had the chance to do before.

“I think what scares people about talking about your mental illness is not knowing what kind of reaction they’ll get,” Reed told The Mighty. “There’s so much stigma that surrounds the issue, and it can be really terrifying to put yourself out there like that.”

“It wasn’t until I started sharing what I’d been through that I realized how common it is,” she added. “Starting Wear Your Label has helped me gain confidence and really take ownership of my own mental health.”

Wear Your Label is launching a Kickstarter campaign on May 20 to fundraise to expand its clothing line. To learn more about the company and see what it currently carries, visit the project’s website

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A Complete Guide to Interacting With People With Special Needs

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We thought we’d try to break this down in the simplest way possible. So here it is, in one easy-to-read graphic: a complete guide to interacting with people with special needs. It’s everything you’ll need to know.

Maybe people will finally get it now. Maybe. 

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If I Never Hear My Nonverbal Son Say, ‘I Love You’

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Earlier this week, I picked up my 5-year-old son, Quinn, from daycare and saw a giant pink poster with a statement from each child in his class noting their “favorite thing about their mom.” My son’s note was at the top, declaring that he “loves his mom’s great cooking.” Quinn is nonverbal, so he clearly did not tell his teachers this. And what’s more, even if he were verbal, I assure you this is not what he would say.

My son is the only nonverbal child in his class, so I immediately felt an ugly jealousy rising in my stomach upon seeing the notes on this poster. All of these children really did say these things about their moms. I’m even jealous of the “my mom wipes my butt” accolade. When something like this happens — and I have to admit it happens a lot — I experience a predictable cycle of jealousy, anger and sadness.

The jealousy is fleeting; I know have a great kid and appreciate his other qualities and skills. The anger though is somewhat subdermal, and I’m not sure it ever goes away. I’m angry at the “it doesn’t make sense” and “this isn’t [expletive] fair” qualities of raising a nonverbal child. The sadness, of course, is a result of the longing to hear his voice and inner thoughts. It’s also the result of the realization that not knowing these things means that some of him is locked away from me.

I glanced at this giant pink poster again today as my son came wildly careening over to me, shouting with joy at my arrival. He jumped in my arms and kissed me repeatedly. His teacher casually looked over at us, smiled and said, “He has the best reactions when you arrive, I’ve never seen anything quite like it.”

It was that moment I thought to myself, “Look elsewhere.” What was that famous quote often attributed to Einstein? “Everybody is a genius, but if you judge a fish by its ability to climb a tree, it will live its whole life believing it is stupid.” I have to look elsewhere or otherwise I am creating the same unfair and hurtful standards for Quinn and for my own motherhood. If I evaluate motherhood according to benchmarks of verbal declarations of love, I will live my whole life believing I have come up short. And nothing could be further from the truth.

So I sat down and wrote this poem for my son and for myself. It’s my gift to us. Because being this kiddo’s mother, when I look elsewhere, is better than I could have ever imagined it would be.

If I Never Hear “I Love You”

If I never hear “I love you,”
Whispered thoughtfully,
If I never hear you say those words,
While leaning into me,
I will find them in your face,
In your fiercest embrace,
In your hand that clutches mine,
As we walk this road together,
Our bond a constant tether,
That needs no verbal declaration,
No murmured affirmation.
Your love, it stays with me,
As a lovely graffiti,
That is written everywhere.
In your touch, your laugh, your sweetest grin,
Are the words that have never been,
In your frustration reaching out for me,
In your sick or weary lethargy,
I hear those words constantly.
In places I never thought I would have to look,
You share the words that autism took.

This post originally appeared on Project Bearings.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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