woman sitting outside on a bench with her brother

The Important Lessons My Brother With Autism Taught Me

155
155

Dear Autism,

You took away my brother’s words. You took away his eye contact. You introduced yourself in a rapid fashion. The babbling, the lack of eye contact, repetitive behaviors, and the lack of social awareness became my brother. These symptoms didn’t only consume his life, it consumed mine as well.

We wanted to get rid of you. Neurologists, psychiatrists, and therapists confronted you. I remember the countless hours my brother spent in doctor’s appointments and therapy sessions. But you didn’t shake. You didn’t budge. You weren’t afraid. You wouldn’t be sent away.

I was afraid of you. I became afraid of the meltdown that was to occur in a noisy restaurant. I became afraid of people calling my brother an “animal” again. I became afraid of walking aimlessly in a hospital again because the autism “spells” came with self-injurious behaviors. I became afraid of the scornful looks my family and I would receive from others who didn’t know you. I became afraid of losing friends – you were “weird” to them. I was angry with you. How dare you think you can control my life?

Autism, you came with a darkness. Yet, you also came with light. You opened my eyes to the difficult truths of our world – some people will judge and reject you all due to a “difference,” and some people will be discriminated against all due to a “difference.” You also showed me that a person must speak up and stand for those who cannot speak for themselves.

Autism, you taught me the importance of patience, kindness, tolerance, and acceptance. I accepted you, Autism. Once I accepted you, I saw your light shine within my brother’s spirit. I saw you glow in my brother’s smiles and laughs. You communicated to us through my brother’s brilliant poetry.

My brother is kind and loving. I am so proud of him. Thank you for sharing your kindness and love for others though my brother, Autism. I look forward to seeing my brother’s bright future with you.

woman sitting on a bench with her brother

Thanks again,

Sophia

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

155
155

RELATED VIDEOS

JOIN THE CONVERSATION

Dear Mama of a Nonverbal Child

1k
1k

I just wanted to sit beside you, green-sleeved lattes in hand, and talk. I know talking to me is no substitute for the conversation you long to have; I know you’ve gone years upon years waiting for a voice. I know you’d gladly give up coffee for the rest of your life — or books or music or whatever gets you through the day — if it meant you could hear his little voice. Her little voice.

I know the twisted, breathless feeling you feel, deep inside, when someone casually asks, “You sure you want him to talk? I can’t get mine to shut up!” Clenched fists hidden in the pockets of a fleece jacket. And — as if taking a cue from your baby — you say nothing.

Like you, I’ve hesitated in checkout lines when well-meaning cashiers kindly question my son: “And how old are you, young man?” Like you, I smile — as if waiting, too — before replying for him.

I’ve hunkered down to face my child, tears racing from my eyes and his, echoing, “I don’t know what you want, baby” before going through the daily show-and-tell of objects:

“Apple? App-app-apple?” (red fruit in hand)
“Movie? M-m-movie?” (holding out a favorite DVD)
“Drink? D-d-drink?” (pouring water into a sippy cup)

I’ve marveled while talking with kids my son’s age — asking such simple questions, just to hear their answers. “What’s your favorite color?” “Blue! No, orange. No, blue!” For just a minute, I imagine what it would be like to ask my own child these questions and hear his replies.

I’ve heard kids in Target singing along with Idina Menzel: “Let it go! Let it go! Can’t hold it back anymore!” The embarrassed mom sees me, a kindred spirit with her own littles in tow. “They haven’t stopped since the DVD came out!” A shared joke between moms. She thinks I’ve been there, too. My story is too long to tell between aisles of home decor and bath towels, so I just smile and nod.

Boy in striped shirt sitting on the sand

There have been times I hit the tiny “x” on my newsfeed when Facebook friends bragged about their genius toddlers. Ignorance is bliss, they say, and I don’t know if it’s bliss, but sometimes it’s better. I think you’ve probably hit that tiny “x” a few times, too.

You know what else I know?

I know the indescribable feeling of watching another child approach my son and stacking blocks, one by one, beside him. “You want to help me, Milo? Let’s build a tower!” The total joy that comes from knowing my child is seen.

I’ve heard the pure laughter of children, my son’s friends, when they chase him. “We’re gonna get you, Milo!”

I’ve watched patient therapists capture my son’s attention and work so diligently, week after week, to elicit even a vowel sound from him.

I’ve been blessed by high school students who give up their Sunday mornings to serve as aides for my little boy. Every week, I sit beside my husband and soak in Gospel truths because of their sacrifice.

We’ve known sadness, but we’ve also known acceptance and unconditional love. I hope you have, too.

We are in this together.

This post originally appeared on Frayed Flowers.

1k
1k

RELATED VIDEOS

TOPICS
,
JOIN THE CONVERSATION

Why I'll Never Stop Trying to Understand Autism

924
924

Dear Autism,

I’ve been trying to find the words to write this letter to you for a long time. I’ll be honest — I’ve struggled. You’ve been a puzzle to me (no pun intended). When my son, Drake, was just under a year old, I searched you out. I read about your poor eye contact, improper play with toys and developmental delays. The more I learned about you, the more I read. I Googled every possibility. I said to myself, “no.” Perhaps Drake has hearing loss; maybe that’s why he rarely acknowledges me when I call his name. He is spoiled, that’s it! We baby him to much, and that’s why he still can’t hold his sippy cup by himself at 1 year old. But you persisted. No matter how much I tried to ignore you, you continued to prove yourself to me.

I often wonder what’s involved in your process of choosing people to affect. I imagine it’s sort of like standing on a hill, looking at a valley full of wild flowers. They all look the same, yet they’re all different. Was it a random plucking, or did you see that one flower that stood out a little more than the others? How did you choose Drake? I, personally, believe God was involved. I believe you would not have been able to “pick” Drake without His OK.

It’s been almost one year since the day we received Drake’s autism diagnosis. I remember pulling away from the appointment with an urge to conquer you. I was resolute. My mission was to hunt you down and make you listen to me.

Days, weeks and months have passed, and I’ve fought as hard as I possibly can to bend you to my will. It wasn’t until recently that I realized you’re here to stay. I don’t know if I will ever understand you. You, Autism, are a complex being. You cannot be pinpointed because you touch each person differently. My Drake cannot speak, but he’s sweet, affectionate, a good nonverbal communicator and not aggressive. There are so many children and adults whom you affect more severely. You cause them to hurt themselves and have extreme aggression and major meltdowns. You cause them to have horrible motor skills and sensory issues.

I don’t understand. I’m sure there’s a method to your madness, but for the families who are affected, you can be so difficult. More important, you’re difficult for those who carry your diagnosis. Their struggle to be understood must be overwhelming.

I’ve gone through so many emotions over the last couple of years while dealing with you, Autism. I’ve watched my precious child struggle with you. I’ve noticed other children treating my child differently because of you. I will not quit. Yes, I’ve accepted that you are part of who my child is, but there is more to Drake than you.

Screen Shot 2015-03-27 at 1.28.07 PM

Drake has overcome so many of the obstacles you’ve placed in his path. I have the privilege of seeing the joy on his face when he completes a task easy for other children. I’m so in love with Drake’s sweet-spirited personality and his laid back attitude in most situations. I thank you for allowing Drake’s personality to shine above any other issues he may face. One day, I hope you allow him to live independently. You may always be a part of Drake’s life, but until my last breath, I will fight to make sure you allow him to thrive.

I will anxiously await your reply. I hope you’re not offended by my honesty and overwhelming feelings. I’m just a mom trying to understand you so I can better understand my child. We’re in this together now. Help me so I can help my son.

Regards,

J. Powell (Drake’s Mama)

This post originally appeared on Walking With Drake.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

924
924
TOPICS
JOIN THE CONVERSATION

Why I Don’t Think Autism Is a Gift or a Problem

19
19

As Autism Awareness Month is coming up, I’ve been thinking about what the diagnosis means to our family.

Our official diagnosis anniversary will be a year in May. I’ve seen a lot of debate about whether autism is a gift or not. Some people think it is, and probably a larger portion feel adamantly that it is not. I don’t feel that it’s a gift and I certainly don’t feel that it’s a problem. To me, autism isn’t something Vegas HAS. To me, Vegas is Vegas.

All of his unique quirks make him who he is. It’s not something he developed or contracted. He was born that way. (We have a genetics test to prove it.) I don’t remember a day when I ever felt anything was wrong with Vegas. He crawled late, but he did this adorable scoot thing that we have tons of videos of. He walked on his toes, which we also thought was cute.

And the flapping. I loved the flapping long before I knew it was an indication of anything. I still do. I have an entire camera roll of flapping videos. It’s how I know what toys he wants for Christmas or what chips he wants at the store. It’s how he shows he’s happy, and no one will try to stop him for exhibiting his happiness in my presence without getting a polite “mind your own dang business.”

I can’t speak for how Vegas feels about not being able to verbally convey his wants/needs. I know he’s one of the happiest kids I’ve ever met.

We send him to therapy not because I want to change him, but because I can’t change the world. If I could make everyone go to therapy to understand Vegas, I would. But that isn’t an option, so the best I can do is help him understand everyone else’s way of doing things.

I don’t think Vegas having autism is a gift or a problem. I think Vegas is Vegas and if that fits the criteria for autism, then that’s fine with me. I wouldn’t want him any other way.

19
19
TOPICS
JOIN THE CONVERSATION

How I Explained My Son's Autism Diagnosis to Him

163
163

My youngest child and I finally had “the Talk.” I had recently sensed that it was imminent, I knew that it was crucial, and I also had conflicting feelings about it.

Many parents of children with special needs know what “Talk” I mean, and it’s not “the Birds and the Bees.” During this “Talk,” for the first time, my child and I discussed the fact that he has a form of autism.

My son is 6 and a half years old and has a dramatic personality. Everything he feels, good and bad, he feels on a large scale. We jokingly call it “not boring.” He has an inquisitive mind, a huge smile, and a great sense of humor. I could go on and on listing positive adjectives to describe him. He also happens to have a diagnosis of autism spectrum disorder, what some might call Asperger’s syndrome.

My heart overflows with love for my darling boy, my baby. I am proud of him and not ashamed that he has a diagnosis of autism. But he often struggles when asked to use his own words to describe how he feels, or why he feels that way. He has only recently started to recognize and articulate his awareness that many things seem to come easier to his peers than to him.

I knew that very soon the time would come when I would need to explain to my son the reason behind some of those struggles. I also knew I had to be very careful with my words and how I presented autism. There is still so much stigma in attached to special needs, or even to simply being different (not in my mind, but society seems to feel differently). I didn’t want him to see himself as flawed, or view his diagnosis as restrictive, limiting his expectations of what he could achieve in life.

I did not want the truth to be damaging. I wanted it to be illuminative and empowering. I hoped that having knowledge of his autism spectrum disorder would improve his understanding of how his brain works and help him be more patient with himself. I hoped it would help him learn coping mechanisms so that he can better deal with frustration, distraction, and anxiety. I hoped that he would be able to tap into the unique way that his brain processes information and use it to accomplish great things.

An additional hope was that, as he grew, it would help him have a greater sensitivity and acceptance towards others around him who may also be facing struggles of their own.

The author's son, smiling.

The day we had “the Talk” was just like any other day; a day that happened to have the subject of autism present itself in a teachable moment. I was on the computer and my son entered the room. He noticed one of those sidebar ads that pop up based on keywords (in this case, “autism”), and a picture of a young boy caught his eye.

“What’s that?” he asked.

“It’s a little boy,” I replied.

“No,” he persisted, “what does it say?”

My pulse quickened and something inside me said, “It’s time.”

I answered him, “autism resources,” and I felt the weight of the words as they exited my mouth and hung there heavily in the room, waiting to be fully revealed. After thinking for a moment, he asked the question I had long expected, “What is… autism?”

I took a deep breath, and everything seemed to freeze. It was almost as if I was outside the situation, looking in, knowing the importance of what was about to happen and that it would change our lives forever. I had prepared exactly what I wanted to say, yet I still felt my heart pound and my throat tighten. I was keenly aware that the manner in which I presented this information would be crucial. In the next few moments I had the power to hurt, or help, his self esteem.

I looked into my son’s beautiful face and began to speak, “Autism is a way that some people’s brains are wired. It may make them think or feel a little differently than other people. It may also make it difficult to concentrate if there is noise around, or make it hard to eat foods with certain textures, or might make someone want to chew on things that aren’t food. They might have trouble calming down if they get really excited, or need to walk in circles. They might even get REALLY upset if they are playing a game and don’t win.”

By that point, my heart was thumping so hard it felt like it was battering against my ribcage, trying to be set free from the confines of my chest. I had been describing specific ways that autism affected my son. I wondered if any of it would sound familiar. I then asked the big question, one that I hadn’t planned, not sure how he would respond, “Do these things sound like anyone you know?”

“Yes,” my son replied, but then stared silently at the wall. “Who?” I asked him. He paused, looking a bit unsure. But then he gave a little half-smirk, and replied, “Me.”

With a mixture of sadness and relief, I reached out and gave my child a reassuring hug. I told him, “I love you so much and am so very proud of you. You are smart and good and funny. Autism just explains why sometimes things feel difficult for you, why you might get so frustrated, and why you have an extra teacher come help you at school.

But autism not only causes you some frustrations, it also makes you unique. It helps you have an amazing memory. Even when you were very little I could read a book to you and you would have the whole thing memorized after just hearing it once.” He seemed pleased to hear that.

I pondered what else to say, and added, “Autism affects people different ways.” I then stressed to him, “Different isn’t bad, it’s just different.” He started to walk away, and I called out to his back, “Do you have any questions?” but he was already gone.

I sat there, alone, stunned and a bit surprised. It had finally happened. I had thought the conversation would take longer, but apparently my child had heard all he needed to. I wondered if I did it right. I wondered if he got it, or if he felt sad, confused, or overwhelmed. I felt a strong urge to cry.

A few minutes later my oldest, the sensitive caretaker of a big brother, came into the room with a concerned look on his face. He exclaimed, “Mommy! He said ‘autism’!” I reassured him, “It’s okay. He asked about it after seeing the word.” “Oh good,” he sighed, “I was worried he heard you say it to someone else. You told me you weren’t going to tell him yet.” “Well,” I replied, “the opportunity came up, and I thought he was ready.”

We walked downstairs together, protective big brother and I, to continue the conversation. We approached my unique, creative, exuberant boy; a boy who also happens to have autism. “What did you tell your brother?” I asked, as he sat at the kitchen table and occupied himself with a roll of Playdoh. He didn’t look up from his work, and replied nonchalantly:

“I have Autism. And it means that your brain works a little bit different than other people. But different doesn’t mean bad. Different just means different.”

Tears filled my eyes as I hugged my son tight. I think he gets it.

A version of this post first appeared on the website Seriously Not Boring.

You can also find Jennifer at her Seriously Not Boring Facebook page.  

163
163

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When 2 Teens Found a Friendship No One Believed They Could Have

4k
4k

With all the stories about bullying and all the stories about the horrifying things the human race can do to each other, let me bring you another side, where friendship needs no words. This is what should be shared 6,000+ times.

Meet Kreed, who is medically fragile, has autism and uses a device to communicate. And meet Skyler, who has Usher’s Syndrome, is deaf, losing peripheral vision, has autism and currently does not have a means to effectively communicate.

 

Both boys have been underestimated their whole lives.

two friends eating

People thought they would never be able to have any kind of friendship. They said they wouldn’t understand. They don’t have compassion. They don’t understand how to love.

People have also never understood why Kreed is so loud and makes the movements he does. Skyler has faced challenges most people couldn’t dream about, yet they wonder why he makes the sounds he does and doesn’t listen and seems to go from one thing to the next. But just because we don’t understand, doesn’t make their connection any less. Friendship doesn’t always need words.

Here is the photo that proves them all wrong.

two friends holding hands walking in the hall

 

Skyler was a little unsure of the hotel surroundings, so I asked Kreed if he would help. Kreed walked over, grabbed Skyler’s hand and they walked in together. Skyler trusted Kreed, and Kreed knew Skyler needed his help.

It was amazing to watch — two boys the world has told would never accomplish things such as friendship and love and meaningful relationships.

In a world where kids sometimes bully kids with disabilities or where adults make fun of those who are different or use hate speech, here are two boys who have found a way to interact without needing words.

They feel.

They care.

They love.

As a special needs parent, I hope and pray that one day my child will find his “tribe.” Someone he can be himself with. Someone who doesn’t mind his quirks. Someone who is just fine with exactly who he is. Kreed doesn’t care when Skyler gets as close as possible to him or when he reaches out to touch him. Skyler has no idea how loud Kreed is and never gets annoyed. He’s realized Kreed is different and similar to himself. So he watches Kreed, follows Kreed and in general, they want to be around each other.

They don’t need words to convey what a comfort it is to find your tribe. They just know. And it’s beautiful. I’ve never seen anything more beautiful in my life.

friends playing on the trampoline

 

So when we say these kids have no limits, we mean it in every possible way. From communication, to cognitive ability to friendship and love. I don’t care that’s its taken 17 years for Kreed to find a friend because this friendship was worth the wait. I can’t wait to see what the future holds for these two.

And I thank them both for restoring hope and love back into the human race.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

4k
4k
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.