You Don’t Need to Know My Child Has Autism to Show Him Kindness

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We’re always open about our son’s autism. It’s not like we make him wear a “Hey I’ve got autism!” t-shirt or badge. But we try to share his difficulties with the hope that people understand and then support him and us. Problems arise when we meet new people. Autism is invisible; they don’t see it. So many times we’ve heard the phrase, “But he looks normal; you don’t know by talking to him.”

Recently we had a family photo shoot. The pictures are beautiful, but for me they’re tinged with regret and disappointment. The photographer wanted us to pose in certain ways. The big lad really had trouble following the instructions. The photographer quickly lost patience, and it made him uncomfortable. Hubby and I stepped in, of course; we helped to place our big lad correctly and quickly explained he’s autistic. We tried to protect him, to spare his feelings. It hadn’t entered my head that he may have trouble with this, so we hadn’t prepared the photographer. But he could’ve had more patience and shown more kindness.

Autism isn’t invisible; it is always there …

In the shoe shop when he can’t hold his foot against the measuring device because he doesn’t feel it.

In the restaurant when he spills his drink or has trouble coordinating his knife and fork.

At the playground when he takes his time climbing to the top of the frame, up the slide or avoids anything that spins.

When he can’t find his shoes, bag, pencil, the iPad, etc., even when they’re in front of his face.

When he forgets to flush the toilet again.

When he has trouble buttoning his shirt or fastening his laces.

When he loses every race at sports day despite trying his best.

When he struggles to respond to a question asked.

In the library when he talks too loud.

When he can’t get the game out of the cupboard.

When he doesn’t look at the camera or in your eye.

At the hairdresser when he can’t stand the sound of the trimmers.

When the school year ends.

When he goes to a new place or meets new people.

When he misses verbal instructions.

At the birthday party he wasn’t invited to.

When he gets lost in the supermarket or restaurant.

When he worries that his brother is talking to strange kids (he is making friends).

When he repeats the same question or phrase over and over.

Autism is there when he runs, sleeps, eats, plays and speaks.

My fun, kind, clever son is often made to feel lazy, stupid, dumb, weird and unsuccessful. Not because he has autism, but because of the impatience of other people.

Thank you to the lady in the shoe shop who shows an enormous amount of patience and takes a long time to make sure the shoes fit properly.

Thank you to the teaching assistant who attends courses in her own time to learn how to help my son.

Thank you to the kids who wait patiently at the bottom of the slide.

Thank you to the kids’ club staff who know when to leave him alone and when to encourage him to join in.

Thank you to the friend who encouraged him to climb, who told him, “You can do it!”

Thank you to the therapist who showed him all the positive things about being autistic when he could only see the negative.

Thank you to the teachers who read the books and learn how to help.

Thank you to my friends who always listen.

Thank you to everyone who reads this story.

Thank you to all those people who smile.

Finally, thank you to the people who try to understand!

I don’t want my son to wear a badge or carry a card proclaiming his difference to the world. He shouldn’t need to! A little bit of kindness — a little bit of patience — make a huge difference.

Follow this journey on Diary of an Imperfect Mum.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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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To My Mom as I Sit Beside Her Hospital Bed

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Dear Mom,

I sit here at 3 a.m. in your hospital room, looking at you, with memories filling my mind. As a medic, I understand what is happening inside your body, although I can’t feel your pain. I feel helpless and unable to give you the comfort you need. I understand the cancer is growing in many places in your body. It kills me to know I will lose you soon.

As a medic, it’s my job to do whatever I can to save lives, but I am literally helpless right now, only watching as you slowly fade away day after day.

I remember when I was young, you tried to hold me and comfort me, but I only pushed you away. I somehow thought you would be just like my birth mom. But as I sit here listening to the IV pumps, I remember the times you showed me your love and care. I’m overwhelmed with sadness. Somehow I think when the doctors come in, they will tell me you’ll be OK, but time after time it’s only more bad news. I’m trying so hard to be strong for you and Dad, but I see the pain in Dad’s eyes. I see the tears fill up; I see the fear of losing the one person he loves in his eyes.

I feel lost and confused. I feel like I have failed you as a son. I’m unable to protect you and keep you safe.

As a medic, I see both life and death. It’s easy for me to separate my emotions when responding to a patient, but when it’s your mother, the lines get blurred, and you suddenly become lost in emotions and memories. I feel my emotions and body being stretched to its tearing point, and I have no idea when that’s coming. Yet to this day, I’m still standing strong, still comforting you in your last moments of life. Somehow I think doing more research on cancer will help me cope with all of this, but in reality, it’s only giving me more fear and doubt that you will feel better.

I want to say sorry for the times I never said I love you, that I never hugged you, for the times I didn’t call. I’m so sorry I was not the son you thought I would be, but I’m here now. 

It’s been a long night watching over you. I sit here in a chair with Dad passed out on the couch, and I think to myself, Finally, I can actually break down. A tear forms in my eye, and then more come, one after another. After a few minutes, I slap myself to snap out of it, thinking, You have to be strong for Mom, you have to be strong for Dad. I see your vitals drop, and one after another your organs fail. You’re on a morphine drip, and I can see you feel no pain. As I look at you, feeling so helpless, I think of all the times we had when I was young. The ECG machine alarms go off, your heart rate dips below 50 and I can tell you’re kissing death. Your blood pressure drops. More time is taken between each breath.

Minutes later, I hear you whisper, “Lord forgive me.” I see you take your last breath. I see your last heartbeat register on the machine… Flat line. No more heartbeats. No more breaths.

Forever I love you, Mom. Forever you will be with me.

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The Words Every NICU Parent Deserves to Hear Before Leaving the Hospital

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Parents who have spent time in the NICU know as the day of discharge approaches, you’re alternately thrilled and petrified.

Will I be able to do this?

She’s already been through so much!

What if…? 

A million what ifs run around your addled mind, some too terrible to even acknowledge.

I was bend over my daughter’s crib with her tiny hand in mine. After all her determination, she still only weighs 4 pounds, 9 ounces, and we had to purchase a special car seat just to get her home. I can tell she absolutely knows I’m her mama and we’ll continue to walk through whatever fire is placed in our path.

After 110 days, multiple surgeries and scares, we’re going home with a trach, g-tube and nursing care. My lovingly designed nursery is overrun with necessary medical equipment. I’m still adjusting to sleep deprivation, having just brought her twin sister home 13 days earlier. I pray I have the strength, but I have a lump in my throat and a tightening fear that things will go wrong.

One of our most dedicated nurses comes in on her day off to say goodbye and good luck. She sees my pale, weary face and says, “You have so much joy ahead of you!”

I was so wound up in my worry, I hadn’t even considered the possibility of joy. Her words completely pull me out of the pit and give me the courage to leave with my daughter.

That nurse ends up being 100 percent right.

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When My Child With Special Needs Learned What No Adult Could Teach Her

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My daughter, Esmé, has a developmental delay. She doesn’t yet speak or walk or eat with her mouth. Harder still, Esmé also struggles with a number of social cues. Her special education teacher has been working on waving for I don’t know how long. I lift her hand every night to wave good night to her papa. Every therapist waves hello and goodbye to Esmé, urging her to join them. Whether it’s because of her lack of control over her body or because she doesn’t understand, we don’t know, but Ez has never indicated any interest in waving. Never once has it seemed to register for her.

I’ve never truly worried that she wouldn’t have friends. I know there are kind and gentle souls out there waiting to embrace her. And I also know Esmé is sweet and fun — even if she can’t run or speak or play in a typical way — and that people are drawn to her.

But I certainly never imagined she would garner the kind of consistent and genuine friendship I have observed while she plays with her peers on the playground of the Taylor School where we’ve been visiting once a week for a year.

On the playground, I stay out of Esmé’s visual range while helping with the other children as they play. Esmé is almost constantly in the middle of a circle of friends. One moment she is sitting at the top of the slide with her teacher, Dorothy, banging her feet on the platform while other kids joyfully join in, laughing and getting louder as they see her happy response. Another moment I scan the playground and find her sitting up in a circle of friends. I had missed her — passed over her twice — because I couldn’t recognize her strong posture.

Last week as Dorothy and I pushed Esmé’s red wheelchair out to the playground, we heard the usual shouts: “Ezzy! Esmé is here!”

One of those shouts came from a girl just a few feet away. She ran right over to Esmé. As the girl approached, Esmé shifted to sit up straight as her back lifted off of the support of the chair. She leaned toward the girl who had stopped in front and to the left of Esmé’s chair. The girl raised her left hand and said, “Hi, Esmé!”

Esmé looked back at her for a beat, and then, pointedly, lifted her own hand and smiled back at her.

Dorothy and I audibly gasped. We glanced at each other, each of our faces clearly asking the same question, “You saw that, too, right?”

Just like that, her peer modeled something, and Esmé, on cue, returned the gesture. Esmé’s friend taught her what none of the adults in her life could: the signs of friendship.

However, what I keep turning around in my mind isn’t so much the gift that the school is giving Esmé. What I think about is the gift the school is giving to Esmé’s peers — like this little girl — by modeling inclusion when kids are old enough to understand she’s different, but not held back by that understanding.

I have come to terms with the idea that my daughter’s trajectory will be as unique and unpredictable as her combination of genetic disorders is unique and unpredictable. I have grown to understand all we really can know about Esmé is what we know of her in the present. I had to unlearn everything I knew about childhood and milestones in order to meet her there in the present.

But her friends have learned the right things from day one.

This is their friend, Esmé. She is going to be 5 in January. She doesn’t speak, but she knows her colors, letters and numbers. She can read. She doesn’t stand without support, but she moves through space in her dancing motion of rolling, pivoting and crawling. Perhaps, most importantly, she has a cat named Chicken. And she likes it when her friends make loud sounds on the slide.

Her friends have included her, as she has learned to mirror their signs of friendship.

And that’s exactly what kids should be learning on the playground.

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Follow this journey on The Cute Syndrome.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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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When My Boyfriend Didn’t Want to Come to My Brother’s Down Syndrome Walk

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My older brother Chess loves movies, wrestling and comic books, and he also has Down syndrome. He has a lot in common with my amazing boyfriend Frank; it was no surprise that they became best friends almost instantly. Chess even invited my boyfriend to visit him in Atlanta (without me!). When October rolled around in 2013 Frank and I had been together for over a year, so I decided it was time to invite him to his first Buddy Walk, a Down syndrome awareness event. “He gets along with Chess so well,” I thought. “Why wouldn’t he want to come?”

Suddenly he had different things to do that Saturday, and I just couldn’t understand it.

Why don’t you want to go?

You love Chess and this is in support of him and so many other families with a loved one with Down syndrome.

Don’t you want to support my family, my brother and even me?

What I needed to realize and what Frank helped me see is that not everyone can jump in full force. Yes, he and Chess got along great but that didn’t mean he was ready to be 100-percent immersed in a community I’d been a part of my whole life. Sounds silly, right?

I apply my same logic when I’m about to get mad at someone who’s used the R-word. I used to be quick to write off anyone who uttered the word without trying to explain why it’s hurtful. I had to realize that I come from an amazing family backed by an amazing community and not everyone is as lucky as I am to have that.

Frank helped me understand that small steps are sometimes the best way to educate and teach someone about something they’re unfamiliar with. That day instead of going to the walk, Frank did something else supportive: he took the R-word pledge. He spoke to his loved ones, friends and co-workers about how the R-word is offensive and asked them to refrain from using it if at all possible.

The next year, Frank and I crossed the Buddy Walk finish line hand-in-hand. He even came along and volunteered with me at the Special Olympics Florida games.

I love being a part of this community and now so does Frank, but he taught me one of the best lessons in compassion and understanding; sometimes it just takes baby steps to learn and grow.

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To the Parent Anxious Over the Future of Your Child With Autism

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Dear concerned parent,

As I look at you I see the love you have for your child.

I see the willingness to want to do the very best.

I see compassion.

I also see pain…

I was once your child.

I now want to be your child’s voice.

So, please listen.

I know at times it isn’t easy for you to understand me.

I feel the same way about you.

I know sometimes it seems like I’m not listening.

It’’s only because I am concentrating on what you’re trying to tell me.

I feel your frustration when I repeatedly do something and you don’t understand why.

It’s just that I’m trying to express myself, and for now, I don’t have another way.

I see your sadness because I can’t accomplish a task you think I should.

But I laugh many times doing things you don’t see.

I hear the anxiety in your words when you speak about me

I wish I had the words to tell you you don’t need to be anxious.

You see all the roads that lay ahead, and you worry.

I see all the journeys that have led us here, and I smile.

You cry for the life you wanted for me and all the sorrow I will have.

I’m delighted with the life I’m living, and I’m dreaming of all I will be.

Please do not look at me as less.

Please do not look at me with sorrow.

Please do not underestimate my abilities.

Please do not believe I’m limited because I have limits.

Your belief and faith in me are my strength and shield.

I’m so much more then what people may see or hear.

I’m a million happy moments, and I’m a million opportunities waiting to happen.

You just need to believe.

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