The author's son in a grassy field under a cloudy blue sky

If You Start to Apologize When I Tell You My Child Is on the Autism Spectrum

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You ask me, “Does your eldest child have autism?”

“Yes,” I reply.

“I’m so sorry.”

My stomach lurches. No. Don’t say you are sorry. I know you mean well. But don’t apologize for the gift that is my boy — for any part of him.

I used to think a child having a disability was a tragedy. I thought that the parents of such children must long for them to be “whole.” But your idea of “wholeness” is skewed by what you are, by what you know. Birds cannot breathe underwater. Fish cannot fly in the sky. We do not spend our time lamenting the lack of ability in either. Nor do we assume that the fishes long to fly, or that birds feel incomplete, soaring through the air.

Fish writhe on the shore not because they are fish — but for the absence of water.

I know you want to express something. You are compelled to respond, to show you care. I know it is a subject that can make those without experience awkward and uncomfortable. You fear to offend and an apology is simple, closed. I am not offended but please — let me explain.

My boy cannot run, jump and climb like some other boys. He cannot dress himself or drink from a cup. Simple tasks we take for granted require a great effort.

But he can list the wonders of the solar system, in perfect order. Planets and moons and stars roll off his tongue. They must all be perfect. Io and Ganymede and Calisto and Europa. His perception of them is governed by rules that are as absolute as the rules of the universe that make them spin. His rules must be flawless, predictable — like gravity. And they are just as beautiful, in their perfection.

Communication can be a challenge for my boy. He has vocabulary — but the mysteries of interaction and communication must be learned. They will never come naturally. Sometimes he cannot tell me what he needs, and his frustration and despair tumble out of control.

But he loves music. He relates to the sounds of instruments more than lyrics and voices. He mimics the drums and the bass guitar and will tell me which instrument is which, his whole body tense with joy as he imitates them. Listening, singing, dancing — they are not enough. I believe he longs to be the music.

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My boy cannot cope with disorder. The pressures of unpredictability take an awful toll. When there are changes, he shows anger, terror, or blankness. I do not know which is hardest to watch. I do know that it is my privilege to hold him, to protect him, to wait — until he feels better.

He is acutely honest. He is sensitive. He is loving. When I ask him how much I love him, the answer is always, “Do you love me as much as the whole world, Mummy?” and I must always reply, “Even more than that, gorgeous boy.”

He adores word games and strange vocabulary and the absurd. Deliberately muddling words can make him laugh until he shakes. He loves to make his baby sister giggle.

I have known no purer joy than watching the delight, mirrored in their faces.

He is perfect.

So, if you must feel sorry, feel sorry for those who do not see what I see. Feel sorry that the world is set up for fish, when he is bird. Feel sorry for those who might shun him, or fail to understand him, or even mock him — for strengths and weaknesses that seem so different to their own. It is their loss, their tragedy. For their perception that he is less, that he needs an apology, is based on standards that are not real. They are an illusion that seems real because the rest of us make it so by our actions, our attitudes.

You do not know what to say. And so you say sorry. You say, I don’t know how you do it. You say, you must be so strong. But my child is not a burden. He is the light of my life. And he would be yours too, if he were your child. Strength flows like water, for those we love. Yours. Mine. My spirit and resilience are no greater than yours.

So if you feel an apology about to escape your lips, stay silent. Or ask, instead, what is he like? What does he love? What makes him smile? What makes him laugh until he shakes?

Because I cannot, and will not, be sorry for any inch of him.

Follow this journey on Someone’s Mum.

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6 Things I've Learned Since My Son's Pediatrician Said the Word 'Autism'

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“This is autism,” the developmental pediatrician said to me and my husband as my son played in the floor. She immediately began explaining what our next steps should be. Before walking into the evaluation, I had been about 90 percent sure those were the words we would hear, but hearing it out loud was still difficult at the time. I looked at my son playing on the floor and immediately felt sadness. I wanted to cry, but the appointment was moving on, and it was important information, so all emotions had to be placed on hold. It was necessary for me to participate for the remainder of our appointment. We were discussing my son’s future, after all.

When the appointment was over and we left, I didn’t know what to feel. I didn’t know where to start. I was completely overwhelmed, so I dove headfirst into research, looking for answers to all of my questions. I read books, I looked online, I joined groups, found a local autism center, and found every resource I could find at that time. I spent so much time learning about the diagnosis from websites and books that I probably could write a book myself. I have learned so much through this journey and through research, but research can only give us so much. Some of the things I have learned since that day are from the journey itself.

1. There is a lot of information out there about autism, but none of it related specifically to my child. None of it was just about my son Brayden. We have had to learn over the years what works best for him and how to make life easier for him throughout this process. The research did, however, teach us about challenges my son might face and how we could work with him in those areas. The research also helped us find people who understood our lives. We found multiple resources for our son through it all and have met some wonderful, understanding people along the way.

2. Autism is a journey. We didn’t know when we received the diagnosis what our future held, and honestly, we still don’t. We know the progress we’ve seen and we know where he has challenges, but we love to look at how far we’ve come. We’ve set goals along the way, and watching my little guy work his way toward them is truly amazing. The journey can be frustrating, trying, emotional, and difficult, but it’s our journey, and we are making the best of it.

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3. We celebrate. We celebrate every milestone that’s met. This whole process has given us a sense of how hard our children work to reach milestones, and we are genuinely excited when they meet them. Each new achievement is magnificent and cause for celebration.

4. The diagnosis didn’t change my child. It changed our lives, yes, but my son was the same little boy I loved unconditionally before the word autism came into our lives. Nothing about him changed that day. My sweet, cuddly, brilliant, adorable little boy was the same walking out of that appointment that he was walking in. We do things differently now and it is hard at times, but my child is beautiful and inspiring. Acceptance was the the hardest part for me, but I’m thankful I’ve gotten there.

5. I had to give myself time. When I was pregnant, I had all these hopes and dreams of who my baby would become. After my son’s autism diagnosis, I was grieving a loss of expectation for who I wanted him to become. I imagined him playing football, being the star quarterback for University of Alabama, and bringing home the Heisman. What I have learned is that all of those hopes and dreams I had for who he would become might not have been his hopes and dreams in the first place. I began to look forward to seeing who he becomes as he grows, and I am not disappointed at all. Actually, my son couldn’t care less about football, and that’s OK. I love what he loves, and I couldn’t be prouder of the young man he’s becoming.

6. “Normal” is not normal. My son will likely never be “normal.” I’m not “normal” and neither is my husband. As a matter of fact, no one truly is. The beauty of being a human is that no two people are alike. We all think and act differently. We have different interests, hobbies, and personalities. We all have different gifts and talents to offer to this world, and this world needs differences in people. Can you imagine how boring life would be if we were all exactly the same?

I don’t want to make my son “normal” because there isn’t a normal. I only want to make a world, which can be overwhelming to him at times, a little easier to be a part of. I feel like it is my job as a mother to do everything I can to make that happen.

Since my son’s autism diagnosis on February 27, 2013, we have had great days, and I have days when I still need to cry. I have learned so much about myself, my family, and my son through this journey, and we have all come so far from where we were in the beginning. Autism is a journey I never planned, but I sure do love my tour guide.

Image via Thinkstock Images

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15 Songs I Listen To When I’m Stressed as Someone on the Autism Spectrum

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When I was growing up on the autism spectrum, I fell in love with music. During the time I was dealing with sensory overload, loud noises would often bother me. But when I started listening to music, even if it was loud, my passion for music made it tolerable. Today I don’t deal with many of the same issues when it comes to noises. With that being said, I still love to listen to playlists whenever I’m stressed and feeling overwhelmed. Here are some of my favorites that have helped.

1. Rolling in the Deep” by Adele

This song is soothing to me. As I explain in my article, “How Adele Helps Me With My Sensory Overload,” her music helps me find calm sometimes in the most chaotic of days.

2. I Wanna Dance With Somebody” by Whitney Houston

3. Larger Than Life” by the Backstreet Boys

One of the first concerts I ever attended was a Backstreet Boys concert in New Jersey. These songs left an impact on me.

4. Lose Yourself” by Eminem

I often lose myself in music when I’m having a rough day. Hearing the lyrics, “You better lose yourself in the music,” truly resonates with me.

5. Hey, Soul Sister” by Train

6. The Man” by Aloe Blacc

Whenever I need a confident boost about my abilities, I listen to this song.

7. Confident” by Demi Lovato

8. Man in the Mirror” by Michael Jackson

This song helps me self-reflect and reminding myself that I can make changes in my life to help me improve.

9. Never Too Much” by Luther Vandross

10. Chandelier” by Sia

11. Everything She Does Is Magic” by The Police

12. Firework” by Katy Perry

This song reminds me about the impact all of us have.

13. Happy” by Pharrell

For someone who struggled with emotional issues growing up due to a lack of speech, I often wish this song were around when I was younger. Positive reinforcement is key.

14. Love on Top” by Beyoncé

Because in our community, to help our loved ones, everything starts with “love.”

15. Don’t Stop Believing” by Journey

This is what I tell all the families I speak with. Whether your child has autism or not, you can never stop believing in what your child is capable of. This song keeps me confident in my mission to make a difference for the people in our community.

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A version of this story originally appeared on Kerrymagro.com.

Image via Thinkstock Images

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When I Connected With My Son With Autism Through a Song

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Yesterday morning, I awoke to the sounds of quiet whimpers from the adjacent bedroom. My son, Leo, was lying in bed with the covers pulled up over his face and tears streaming down his cheeks. I crawled into the bed beside him, wiping away his tears and comforting him in whatever way I knew how. His dad followed, and all three of us laid in bed until the tears ceased and anxiety seemed to slowly be exiting Leo’s body.

It was a nightmare that caused his distress, I believe. Although, I can’t be sure. It is still one of the most heart-wrenchingly difficult aspects of this autism journey that I grapple with — not knowing why my child is upset and how to help him.

I find myself playing detective a good deal of the time, looking for clues and trying to solve the mysteries that are so often attached to my beautiful boy.

Babies are unable to express what they want or why they are upset through the use of words, so they do so, more often than not, by crying. As parents, we learn very quickly to check off the handful of basic needs generally linked to their discontent before further exploring: Are they hungry? Do they need to be changed? Do they simply want to be held?

Leo still has basic needs that he has difficulty communicating to us: Is he hungry? Does he have to go potty? Is he over-stimulated? Is he seeking attention?

Like parents of newborns, I, too, go through my checklist.

But Leo is not a baby.

He is a 6-year-old boy with rich and complex thoughts and emotions that he simply can’t fully express.

Yesterday was one of those days where the weight of this challenge seemed to fall heavily on all of our shoulders. Until Leo, in his own uniquely glorious way, gave his mommy a glimpse into that beautiful mind of his.

While the three of us sat together, we watched one of Leo’s favorites, “The Muppet Movie.” I glanced over during one of the last scenes of the film and noticed tears welling up in his eyes. Except unlike that morning, there was no fear behind them. They were happy tears, as he had clearly been moved by what he was viewing on the screen. I was moved, too, feeling every emotion through his tear-filled eyes.

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And when the final scene began to play (a song and dance number that Leo adores), he grabbed my hand, looked at me intently and requested, “Everything is great?” That prompted me to sing along with the film.

And so I sang:

Everything is great.
Everything is grand.
I got the whole wide world in the palm my hand!

Leo’s own tiny hands clutched tightly to his chest excitedly, while he turned his attention back and forth between myself and the film, eagerly anticipating each new verse.

I’ve got everything that I need right in front of me.
Nothing’s stopping me.
Nothin’ that I can’t be.
With you right here next to me.

There will be challenging days to come. But those challenges will continue to make us stronger and help us to appreciate the love we have for one another — and moments like these where I’m able to connect with my child through a song and a movie that brings him so much joy.

Because no truer words could be sung.

Life’s a happy song when there’s someone by my side to sing along.

Follow our journey on Life With Leo on Facebook.

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When People Ask If My Son With Autism Has a 'Special Power'

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“So what is Adin’s special power?” a close friend asked me, straight-faced and well-intentioned.

I scrunched up my face. “What do you mean?”

She persisted. “You know, they all have something they are really good at.”

Crickets. And then it clicked. This was the “Rain Man” question! Dustin Hoffman portrayed an autistic man in a 1980’s movie called “Rain Man” that gave much of America its first glimpse of autism. Hoffman’s character lived a life ruled by routines and rituals from which there could be no deviation. He had difficulty making eye contact, engaging socially and was institutionalized. With all of these challenges, he had a special power. He was a savant and could compute complex calculations in his head.

I mumbled sarcastically, “Adin loves to spin the wheels of his toy cars. Oh, and he can also spin the wheels of his toy trucks. I don’t want to brag but he can spin anything that is spinnable. He has a talent for it and he is the best at it. Spinning is his special power!”

The world took a few more turns and another friend asked my wife the same question over coffee. Well aware of the snarky reaction I would get, I thought of Adin’s mastery of  jumping. He is a kinetic wunderkind. He can jump on the couch and off of it, from the tops of staircases to the hard ground below, into a pool and for hours on a trampoline. At jumping Adin has no equal. Jumping is his special power!

When Adin was born, we were a young family with a beautiful daughter, excited by life and the journey we were taking. Adin had other plans. He was diagnosed with autism shortly after his second birthday and is bringing us on a different journey, one we never expected to go on. We re-packed our bags to join him, and I discovered something on the way.

Adin is magic. With limited speech and a blinding smile, he communicates pure happiness. He gives unconditional love, hugs and a kiss on each cheek to those he cares about. He will introduce you to people you may have otherwise never met, like amazing teachers, medical professionals and caregivers working tirelessly to ensure Adin and others with autism and their families have full meaningful lives.

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Adin can create a tent out of blanket and then watch a video underneath it and be at total peace. He taught himself to expertly dribble a basketball with both hands while running through the house. He will draw you in with his infectious laugh when tickled or doing something he knows will make you proud like finally putting his head underwater in the bathtub.

Adin teaches that small steps are accomplishments and must be celebrated. Happiness comes from little things like a ride in the car to get fries or an afternoon of swimming together. Adin forces me to take a break from my hectic day so we can watch TV, walk in the woods or play in the backyard.  And when I do, the light in his eyes shows just how proud he is of me, too.

So go ahead, I’m ready. Ask me about my son’s special power.

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What Does It Mean to Be Labeled a 'High-Functioning' Autistic Adult?

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I am a so-called “high-functioning” autistic person. I have been diagnosed with Asperger’s syndrome (AS).

What exactly does it mean to be a “high-functioning” autistic person? I’m 28 years old, and to this day, I don’t know the answer to that question.

Does it mean to function better in your everyday life than your “traditionally autistic” peers?

Does it mean you are a genius who will change the world (Albert Einstein and Alan Turing are among the persons who supposedly had AS)?

Does it mean you can do more than most people with the same diagnosis as yourself?

When I’m at my lowest, my mom tells me I keep outperforming my peers all the time. When she’s not around, I tell this to myself. At first it was just a repetition of what I’d been told. By now, it’s become an instinct.

Deep down, however, I know that at worst it’s a lie. At best, it’s a half truth.

As many people with AS, their friends and their parents know, the capabilities and mental fortitudes of those diagnosed can differ wildly from person to person.

Myself, I think I’m moderately successful compared to my “highly functioning” peers. I have a bachelor’s degree in journalism. At the moment I’m in the first year of another bachelor’s degree, this one in Russian language. Because of circumstances surrounding past internships, and less media jobs, getting a paid job as a journalist has proven to be next to impossible. However, I’ve had a couple of stints as a journalist for student magazines, and in the process I’ve met a lot of interesting persons. I’ve had experiences and conducted interviews I’ll remember for the rest of my life.

I’ve traveled to 22 countries in Europe. I’ve also been to the U.S., South America and Russia. I’ve written two novels, and I dream of finding a publisher willing to publish them.

However, compared to my non-autistic family, the people I grew up with and the people I surround myself with every day, I feel like a failure on almost every level.

I’ve never once held a paid job. I’ve only ever had one girlfriend. I do not have an extensive social circle, and while extremely grateful for the friends I have, I have to work twice as hard as everyone else to maintain them. I have bouts of extreme anxiety and depression, and it seems unlikely I’ll ever be able to get rid of them.

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I’ve met people like me, mostly online, who are only too happy to label their condition as a gift. For me, my AS can feel like a burden when it does not give back what it has taken away from me. Intellectually, I know that given my circumstances, none of these can really be considered “failures.”

But unless I can manage to accept me for what I am, or perhaps more importantly, who I am – that is, a person with unique challenges, I know I’m bound to hit a wall in the near future.

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