girl drawing the U.S. flag with chalk

Growing up there were two great influences on my life. These influences taught me how to live a life of faith, love and sacrifice. 

My father was a military man. He spent more than 20 years serving our country. As a child, I was privileged to travel the world. I am a better man for it. My father’s time serving the nation deeply influenced my love for multiculturalism. Living with and loving other races, ethnicities and cultures was a part of my early childhood development.

My father wasn’t just a military man; he was also a minister. He was equally as serious about being a pastor as he was a soldier. He was committed to doing both with excellence, and, in many ways, his ability to give his life to something greater than himself influenced the way I serve others today.

Although I had a fairly good childhood, I also had a particularly difficult childhood. I struggled to understand people and to make sense of the world around me. But when you move every few years and live in different countries, those challenges are to be expected. It always seemed as if the entire world was in on an inside joke that I just didn’t understand. Despite almost being kicked out of high school my freshman year, I survived. I made it through college. I got married. I became a father. I earned a doctorate degree. Despite all of these accomplishments, I still had an internal struggle I had yet to address.

In 2013, I finally hit the proverbial wall. My self-taught coping strategies stopped working. I came face to face with the reality that the issues I had worked so hard to hide weren’t as hidden as I had once thought. Success didn’t strip me of my struggle. In fact, to some degree, my success seemed to place me at the center of finally having to deal with my internal struggle.

When you grow up the way I did, you learn quickly how to defend yourself. As a child who was often the subject of bullying, I learned to defend myself. By the time I was 36, I had developed the perfect response to every question about me. When people observed what seemed to be a lack of social skills and social awareness, I did what we all do. I denied it. I defended it. I dismissed it.

After decades of this battle and the burden it had become on my mental, emotional and spiritual health, I took a deep breath, looked myself in the mirror and uttered four simple words: “Everyone can’t be wrong.” Realizing there had to be a reason for these observations, I finally mustered up the courage to take a hard look at what I was experiencing and what people were observing. The result was that I was professionally diagnosed at age 36 with Asperger’s syndrome, an autism spectrum disorder (ASD).

I am in no way making light of autism spectrum disorder. As autism advocate myself, I take very seriously the need to provide resources and support to those in the autism community. It is a cause to which I have given my life since being diagnosed in 2014.

With that being said, I believe that out of all the factors that may have led to my years of living with ASD undiagnosed, I think the biggest factor is my developmental history is a mystery.

We didn’t know what to look for then, so as the years went on the struggles I had were attributed mainly to character flaws or behavioral issues. My diagnosis eventually helped to bring some closure to a period in my life that was very difficult, but it also helped to promote a series of conversations about both my past development and the future direction of my life. As a result, I understand the world around me in a much different way than before.

In a time of social, civil and racial unrest in our country, I believe we have lived with the same silent struggle I had experienced until just two years ago. America has excelled despite her difficulties. She is indeed a great nation. She has grown up and had a lot of success, but she has still struggled and many of her self-taught coping strategies are no longer working.

Perhaps our great nation also has a mysterious developmental history, and the result is a country that struggles to find herself and appreciate both the beauty and the burden of living up to its fullest potential by embracing its ideals and core values that all people are created equal.

As I child, I learned to give my life to something greater than myself. As an adult, I learned it meant learning to listen to what everyone else seems to know about me except me. Eventually, it meant asking myself a tough question: “What do people experience when they experience me?” It’s the question that led me to the conclusion that everyone can’t be wrong.

Yes, I am sure there were people who didn’t mean me well. I am not totally naïve, but I also believe there were enough incidents and enough verifiable evidence to suggest that I take some of their objective observations seriously.

Our country is great, but she has been left to figure herself out for so long that she learned to deny, defend and, in many cases, dismiss the objective observations of those around her. When people of color, the LBGT community, the Native American community, the disability community and immigrants are all making objective observations about what they experience in our country, it has been my personal experience that everyone can’t be wrong.

While I don’t pretend to have all the answers, I do know the value of asking the right questions. My hope and prayer is that our nation, as great as she is, finds the courage to finally ask herself the question that I had to ask myself: “What do people experience when they experience me?”    

In the end, asking that question has allowed me to become a much better man, and I believe if you have the courage to do the same, you can become a better country, too.

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What does the real life of the parent of a child with autism look like? As with any parent, appreciating the good parts is essential, both for the parent and for the child.

I came away from a workshop a while back about raising a child with a disability, and the speaker, Kathie Snow, said something really important. She said that too often, we identify our children by their disabilities, naming them first before their names. Even worse, we tend not to spend a whole lot of time on their positive attributes, despite the fact that there are so many. When you talk about your child, say his or her name, talk about three things you appreciate about him/her, and discuss the child’s likes and dislikes. Allow other people to see, through you, the good in your child.

In John 8:32, the Bible says “the truth will set you free,” and as often as this quote is used, it seems infrequent that we pursue the actual truth.

What are the truths I know about my son?

One of the most challenging things about parenting a child with autism is the uncertainty you can experience. And sometimes, no matter how much we reinforce positive behavior and attempt to understand other behaviors, they crop up quickly and without much warning. But I know even though we go through many rough patches, no matter how badly I sometimes handle his meltdowns, he always comes back to me with love in his heart. If I need a confidence booster, he’s there to tell me how great a mom I am. In fact, according to him, I’m “the best mom ever,” but I’m also pretty and sweet and I make him proud. When it comes to his brother, Squeaker has no competition for the most protective brother. He will defend him and protect him always. If you need a cheerleader, he’s there. If you need a hug or a kiss, he’s ready to give one. And he has a mind like a steel trap. Once the information gets received, it never leaves his mind. My son has an inquisitive nature, a good heart and a delightful sense of humor — not to mention a large amount of gratitude for the small things in life.

It’s unfortunate that so many people overlook the most wonderful things about my son. There is so much more to him than the challenges he faces. There are things he does to cope with his need for structure, attention, routine and comfort, but they do not encompass all of who he is.

Parenting requires you not only to have the courage for advocacy and the strength for getting through hard times, but to have a heart large enough to hold all the love. So tell me your truth. Shout it loud and proud. Tell the world about the wonderful world of parenting and your child with autism.

Follow this journey on Embracing the Spectrum.

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The shrill sound of bone saws. Bright lights. The harsh smell of bone cement. Many people talking at once. Different tones of beeping from the heart monitor, oxygen sensor, and ventilator. Heavy metal music blasting from a speaker right near me. Sounds of hammering from big orthopedic equipment.  Oh, yes, I forgot to mention, I have a patient’s life in my hands.

It’s not for the faint of heart. It’s almost certainly not the environment you’d expect to find an autistic person working in. Yet each weekday morning I’m up at 3:00 A.M. to get ready for work in the operating room as a Certified Registered Nurse Anesthetist, doing anesthesia for major surgery. It isn’t an easy job for anyone, but toss in being autistic and the job gets even tougher.

I wasn’t even diagnosed with autism until age 50. I went my entire life not knowing why I was
different and never fit in. It wasn’t until one evening while at work when a co-worker told me about her son getting diagnosed, and I looked at her papers that I realized I’m on the spectrum. I got formally diagnosed three weeks later.

Embarking on my career wasn’t easy, because there are so many sensory issues to contend with in the operating room, and I had to learn to cope with it all. Back when I was in my training at Columbia University and the big New York City hospitals, I didn’t know why all the extreme levels of stimuli never seemed to bother anyone else in the operating room. Now I understand.

I have to interact with endless people each day in preparation for each case — the patient, their family, the surgeons, the OR staff, the anesthesiologist, and other staff. Back in the beginning, it was so painfully difficult for me to do this. Yet because I’ve done it over and over, it got easier all the time. I have now been in this career for 28 years, done over 50,000 cases, and interacted with over 1 million people.

Each patient presents with a different medical history, type of surgery, and medications they are taking. All that affects the type and way each anesthetic is administered. I’ve learned to be flexible and spontaneous to adapt to the daily changes that present themselves. Each weekday I go to my job and spend 10 or more hours working with an ocean of neurotypicals. I must keep up with them or else I’d sink.

Yes, I’m mentally drained by the end of each day. I listen to my co-workers in the locker room at the end of each day talking about how exhausted they are. I feel as though my exhaustion goes far beyond theirs, because they are not autistic. The massive sensory overload I endure does take a toll on me. But somehow I have built up a tolerance, to be able to withstand it and function at my job. I developed this ability over time, from doing over and over again. My success demonstrates that despite being autistic, I was able to gradually build that tolerance.

I know many people on the autism spectrum who have a job, which is great. But it’s rare to find someone working a high-stress, fast-paced job like I am, with lots of social interaction. I aspire to be an inspiration to others on the spectrum, and their families, and to demonstrate that you can achieve great things if you push yourself beyond your comfort zone and follow your dreams.

I often feel like a magician, “Master of the Impossible,” doing a job so demanding, so fast-paced, so high-stress, and with constant change. Over the years, I had to step outside my comfort zone. Of course it was scary, but I did it. And I believe you can too!

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The other day I was talking to a complete stranger at my son’s summer camp’s bus stop. We chatted like old friends. There is something that bonds us all together… the experiences, the pain, the joy, and the lessons. There is so much to share. We finally parted, promising a lunch date along with some spa time… knowing well, it was easier said than done

On my way back, I thought… I was never the kind of person to just approach someone and start talking. I preferred the comfort of familiarity. And today, here I was, chatting with someone I had never met and feeling the most at ease about it. It got me thinking – my son’s autism diagnosis has changed me as a person. It was time I gave autism its due.

Strong and Determined

I remember the days when I could never say no, disagree or put up my point – with conviction. I was mostly happy compromising so everyone around me felt good. Fast forward to today. I’m my son’s advocate. If I sit back and compromise, Vedant is not going to get his due. I had to stand up for him, at his IEP meetings, to his teachers, schools, therapists, doctors, local authorities, family, friends, strangers who wanted to judge him at a mall or a grocery store or a playground, and anyone who comes between Vedant and his well being. I am a stronger, more assertive person today, who will not take no for an answer when it comes to her son. Autism has taught me to speak up and speak out for what is right, to have Vedant’s back all the time. It has made me extremely fierce and utterly determined.

The Elusive Patience

Let’s talk about patience. A bad hair day was never a problem for me. All I needed to do was pick up those pair of scissors and chop off the unruly lock and I was all set. I didn’t have the patience to see things through. I could not revise my papers for a test patiently, I would not do DIYs because you would need to be patient for stuff to stick, grow, dry etc. I just could not wait. Oh well… neither could my son, who decided to come six weeks early. He could not wait either. I guess it’s in the genes. However, now I’m a more patient mom. I wait for his meltdown to pass. I have been waiting for him to reciprocate a hi. For the past four years I’ve been patiently trying to teach him the color red and am still working on it. I’m still waiting for him… patiently… to talk to me, to bring home a friend or to ask for a toy. I’ve learned to wait, to be patient and to keep trying because if there is one thing autism teaches you, it’s endurance.

The Glass Is Half Full

Optimism comes with the territory. I always hope for the best. Not that I was a pessimist but now I’m an eternal optimist. Optimism is what keeps me going because if I lose hope, I fail my son.

Show me a parent who is not resourceful and I’ll show you a child who will make them one. Every parent learns to find ways to make things work. It’s just that autism can throw in some extra challenges, so I’ve learned to use my imagination a little more and think out of the box. I can pick a mundane object and make it a sensory toy, or turn an activity into an occupational therapy task. With my son’s limited ability to eat, I’ve become chef of sorts and can transform quite a few foods into a more compatible meal. I don’t claim to be a supermom, but I think I’m getting the hang of it pretty well.

Today Is a Gift

The best thing is to not think too much about what lies ahead. Autism has taught me to live in the moment. I really don’t like to think far out into the future. It scares me. To think what would happen to my son after I’m gone… it sucks the life out of me. I used to cry and worry a lot. Not anymore. Not that often. I’ve chosen to enjoy what lies in front of me, take each day as it comes and celebrate the things Vedant is able to do and the progress he makes. I live in the moment, for the moment, for Vedant. I try not to worry too much over things I cannot control.

No More Judgment

Empathy… it’s a virtue we all pretend to have but not many actually possess. I’m not claiming to be the “angel of compassion,” but my ability to connect with someone else has increased manifold. I don’t rush to judgment anymore. I try putting myself in another’s place and see things from a different perspective… I really do. This is a change I’m proud of. I’ve been a victim of judgment, so I cannot afford to be the culprit. When people judged my husband and me every time Vedant had a meltdown or a behavior, I know how it felt. You don’t walk around with a board on your forehead telling people your story. You shouldn’t have to. People are either supposed to understand, offer to help in some way, or mind their own business. With my son’s autism, I’ve found a better way to connect to others.

Parents who have a child with sleep issues know pretty well how much of a luxury a good night’s sleep. They say successful people sleep less. Well, I’ve got the “sleep less” part mastered; now I’m just waiting to be successful. I believe, my son has made me a stronger, softer, and more confident individual. The changes did not happen overnight. My son leads the way for me to be the person I was meant to be so I can look our challenges in the eye and tell them I’m ready. We are ready.

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.

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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“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.

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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