The Moment My Son Taught Me What It Means to Dance Like No One's Watching

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The author and his son We left the pool earlier than my son, Darrin Khan, wanted, but on Sunday the pool closes at 6 p.m. We sat by the side of the pool for a while hoping the lifeguards would blow their whistles and invite the one remaining child back in. After some convincing, we headed for the showers. DK enjoys this part because unlike at home, he can use as much foamy soap as he wants. I’m still not sure what he does with it, but he really likes it.

Eventually we head for the lockers where I get him dressed. This day, we picked lockers that were right in front of the large mirror above the wall of sinks. Once he had his socks and underwear on, he hopped up on the bench facing the mirrors and started dancing to the overhead music. I don’t recall the song, but Chubby Checker would have been impressed with his moves. I enjoy watching him dance and I love that he gets so much joy from it. But I have to admit — I had mixed emotions this day because of the two other members in our locker area. I confess, it’s my own hang-up, but I have a chip on my shoulder about people judging my son, who has autism. Their smiles put me at ease a bit and DK wasn’t about to pass up a chance to dance to cool music with mirrors present. Then one of the men said to me, “That’s what we all would do if it was politically correct.” I’m not sure about the politics, but I understood his meaning just fine – and he was right.

It took me almost 40 years to be comfortable enough to really be myself. Part of my shyness as a kid came from the understanding that other kids were judging my every move. One of the reasons I loved sports was because I could increase my social rank without saying a word. I envied the kids who seemed to be oblivious to the judgment all around us. So, while I often find myself right back in middle school, aware of the judging eyes all around my son, I’m also in awe of my son’s complete lack of concern about it. For his entire life he’s embodied one of my favorite quotes: Dance like no one is watching, love like you’ll never be hurt, sing like no one is listening, and live like it’s heaven on earth. — William Purkey

The author's son wearing a yellow shirt I would be lying if I said my son’s style makes life easy for him. But conformity is a necessity in school and many aspects of life. The education system was not designed for kids like Darrin Khan and his desire to literally dance to the beat of a different drum meets conflict with a system that requires kids “get with the program.” So therein lies the dilemma that parents with kids who don’t fit the model of modern education face. We fight for the ideal while coming to terms with the fact that “not that bad” might be the best we can do – even in the best schools. Kids like DK are the first thing we think about when we wake up in the morning and the last thing we think about when we go to bed at night. They light up the lives of those around them and they consistently steal the hearts of those who get close to that light.

Last night we took him to a mixed martial arts class for the first time. The instructor is amazing and knows Darrin Khan. True to form, DK found joy in the experience while failing to meet the class objectives. What can I say? He’s a dancer, not a fighter. Communication is more than just speech and we would do well to listen with more than our ears. I would tell him to “dance like no one is watching,” but he’s already there. We need to catch up. It does seem odd that we spend so much time teaching our kids to conform while spending the rest of our adult lives teaching people to be authentic.

This post originally appeared on LinkedIn.

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When I Didn't Feel Welcome in an Autism Support Facebook Group

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For us, diagnosis was not a surprise. We’d long asked our pediatricians about autism. From the earliest moments, it was obvious our son was different than other babies we’d been around. We thought a lot of the differences could be attributed to his cleft lip and palate, the fact that his mom and dad are both a bit quirky and that he was an only child at that point. By the time he was 3, I was certain that he was on the spectrum, but he was already receiving speech and occupational therapy for food aversions and his cleft lip and palate. We wouldn’t have added any other services, so I was comfortable with forging along without diagnosis. I had lots of online information regarding sensory processing disorder and found much help and comfort in learning.

Preschool came and went, and he did well. But by kindergarten, I knew we had to do something else. In October 2011, I spoke with the school psychologist for the first time and asked for a formal assessment. In December, we received our formal diagnosis. I’ll never forget. We took the boy out of his martial arts class, explaining to the teacher that we were going to take some time to focus on therapies again but that we hoped at a later time we’d be back. That’s when I got my first apology for our diagnosis. I was no stranger to apologies; after all, our son was also born with a birth difference. But this one hit me in the gut.

I took to the Internet and finally joined Facebook. I expected to find community. Belonging. Moms welcoming me with open arms and warm hearts. On January 5, 2012, this is what I blogged:

I don’t quite know what I expected when we received the Asperger diagnosis. Perhaps, community? Understanding? Peace? I don’t know. It’s hard to feel part of a community when there is so much division and anger. One group says, you aren’t autistic enough to be here, you don’t know our struggles. No I don’t. But, you don’t know our struggles, either. I mean this on the human level. How many of us know what it is like to walk in another’s shoes? None. Yes, my son is verbal. Yes, my son is gifted. But, you don’t see his ulcers from the anxiety he holds inside. You don’t see him when he has spent his day struggling to contain stims. You don’t see him when he’s sad because he feels as if he has no friends. As humans, we all want love and understanding. Because I speak of Asperger syndrome, it doesn’t mean I don’t want care for the autism spectrum at large. I do. I speak of what I know. Just as someone who writes about breast cancer doesn’t seek to diminish leukemia. We’re all doing our best to navigate this world and form community. Perhaps, I look in the wrong places. Perhaps community is closer than message boards, websites and blogs. Perhaps, I need to forge a community of my own.

Do you see that last sentence? “Perhaps, I need to forge a community of my own…” That’s exactly what I did by creating a closed Facebook group, which I still have. It’s full of the most amazing, supportive, phenomenal women I’ve never known. We laugh at ourselves, whine, complain, cheer for each other and our children. It’s the single best autism related-thing I’ve ever done for myself. The second step, was starting the public Facebook page, AutismInOurHouse. I started by sharing my blog, which forced me to write in a new way, a more in-depth perspective. By doing this, I’ve gained more insight into my thoughts. The more I write about my feelings, the more I think about them and am able to sort and work through them.

If I could go back to diagnosis day, I’d tell myself, “Do exactly what you are feeling the need to do. Find your people.” No matter the diagnosis one receives, no one understands like the people who are walking the same path. Even the same path has different pebbles and stones for each walker, but nothing replaces knowing that the person you’re talking to — even via private message on Facebook — “gets it.” Nothing. Go. Find your people.

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This post originally appeared on Autism in Our House.

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Someone Asked My Son With Autism Why Eye Contact Is Hard. This Was His Answer.

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I received this question, through my own blog for my son, who has autism. His name is Philip.

Hi Philip,

My sister, who has a son with autism, just told me about your page. I’m a big admirer of what you’re doing.

I am trying to learn everything I can about what life is like for my nephew so I can interact with him better. As I’m only just discovering your page, I’m not sure if you’ve covered this topic before: Why is it so difficult to make eye contact with people? For me, it was always hard to communicate with my nephew because I used to think he wasn’t paying attention since he was looking away or stimming, which made it seem like it was impossible for him to hear what I was saying. I know better now but would love to find out more about what it’s like. Thank you for opening up your world to us – you are an inspiration!

I had Philip write back. He said:

I am letting you know about eye contact. My eyes see very well. Most people seem to need to have to look long and hard to make sense of a picture. I can take in a whole picture at a glance. Each day I see too many little petty details. I look away to not get overwhelmed by a lot of little bits of information. I watch things that a teacher or person I listen to tells me to watch. This helps me concentrate on what I should be focusing on. I can search for a teacher’s voice to try to focus on. I am academically learning best when I sit side-by-side with a teacher. A seat on the side keeps me focused on your voice and not on visual distractions. I am assessing many sounds too. I have to erase some stimuli to access my answers to people’s questions and meet their demands. That is why I don’t make eye contact. I am always listening. I listen a lot to voices. I so love when people talk to me and are not talking like I am not there. I am active because I am unable to feel my body well. People think I am being rude but I can’t help it. I need to move to feel my body, but sitting down at least helps me not walk away from you. Please peacefully talk to your nephew. Let him know you understand. I am sad when people think I don’t like them. I love people.

Love,

Philip

philip reyes

This post originally appeared on Faith, Hope and Love… With Autism.

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What I Want You to Learn From My Broken Marriage

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Autism gets a bad rap with families and marriages. I’m sure you hear it all the time. The pulling apart. The stress, the constant worrying, the lack of time with your spouse and other children.  The focus becomes your affected child, and there’s no time for you or your partner.

I thought my marriage was strong. It wasn’t strong enough. My spouse and I did what many parents do: gave everything we had. Every spare waking moment was directed at the children. We were tired. Timothy, my child with autism, had a long and aggressive period we couldn’t seem to come back from.

I cried — and often. Timothy focused a lot of his aggression on me for some reason, and it beat me down — far down into a deep pit of despair. I couldn’t take him anywhere without a second adult. He destroyed our home, his anger apparent on our living room walls. My partner couldn’t understand why I cried. It hurt. I didn’t feel supported — although looking back, maybe he was supporting me in his own way.

We drifted apart slowly, not even noticing at first. As usual, the children were priority. But this is what you should learn from me:

Who was there before your children? Your partner.

Who is your backbone? Your partner.

Who will be there when your children grow up and leave the nest? Your partner.

There’s no handbook on parenting or managing a marriage and special needs. You sort of have to fumble through it, messy as it can be, and figure it out on your own.

If I can give you anything from this to take away, I want to encourage anyone reading to make time for your partner. You — moms and dads of children with special needs — are as important as your kid. I’m serious. Make time for each other. Love each other. Often. Even if it’s only a few minutes a day or a monthly date night. Learn from my mistakes.

As for me, I’ve learned so much these past few months on this roller coaster called love and marriage and special needs. I call this coaster, “One day at a time.”

This post originally appeared on The Book of Timothy.

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Why I Used To Cringe at the Word 'Autistic' and Why I Don't Anymore

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10708576_10152799234684282_771262623762835093_o I used to cringe at the word “autistic.”

I hated that word.

I had a blog draft started called, “Why I Cringe at the Word ‘Autistic.’” I asked my family to stop saying it by politely and lovingly telling them it was putting a label on my son. It was defining him, and he’s so much more than just an autistic kid.

My feelings on the word “autistic” are hard to articulate. The word sounds so severe to me. It boiled down to this, though: Autism is not something my son is. Autism something my son has.

Of course, it’s just one little word and it’s not meant in a negative way. But when something is so close to you, such a big part of your life, impacts your child —  the child who you’re incredibly protective of — a simple word can stir up emotions.

Here’s where this changed for me.

I was reading a blog post about using word “retarded” to refer to a mistake or something you don’t like. The comments below the post steered in different directions. “Is autistic” vs. “has autism popped up. Someone who actually has autism offered her opinion, which completely peaked my interest. Who better to listen to about autism awareness than someone who actually has autism. Here’s what she said:

“I am autistic though. Not a person ‘with’ autism. Autism is not a personality quirk that I carry around with me, it’s a part of who I am.” 

Now, imagine if someone without autism said this:

“People are autistic though. They’re not people ‘with’ autism. Autism is not a personality quirk that they carry around with them, it’s a part of who they are.”

These statements make different impacts. Hearing someone who actually has autism say it made all the difference for me. I have my own struggles, but the bigger picture is about my son. One day, when he’s able to put his thoughts into words, I’ve got to ensure that I truly listen to what he has to say and not get caught up in my own emotions and ideas about what he wants. After reading her comment and reflecting on it, I’ve come to the seemingly obviously realization that I will forever ask for my child’s opinion.

I’ve said before that I can’t imagine my son without autism, yet I was so hung up on the word “autistic.” That’s not what I’m truly hung up on though. I’m scared. I’m afraid Brandon’s peers won’t understand him. I’m afraid when his teachers talk about him they’ll say, “You know, Brandon… the autistic one.” The thing that keeps me up at night is that Brandon’s feelings will be hurt because some adult lacks compassion and understanding or an innocent child just doesn’t understand.

After reading this woman’s comment, I’ve changed my perspective. Being open and willing to change one’s thoughts when warranted is so important in this special needs world. Brandon is autistic. As I’ve said before, that doesn’t define him, but it is a part of who he is. I’ve known this all along.

This post originally appeared on Ramblings of a Special Mom.

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The Question I Should Really Be Asking About Autism

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When the time came for me to have children, there were a lot of options and situations that I knew I needed to be prepared for. I have to admit — a majority of my thoughts were about choosing nursery bedding and baby names. Would I use cloth diapers or regular ones? What stroller should I get? It had never occurred to me that I needed to prepare myself to raise a real-life superhero.

young boy in superhero costume

When I see my son, I don’t just see a child with autism who needs help to be part of the world. I see a superhero who can teach me and others far more about the world than I could ever teach him. I see the most amazing, dedicated, triumphant child who has a unique skill set unlike any other. I see a boy with the truest, honest, kindest heart that I’ve ever seen. I see a boy with great passion for life. He’s a person with a special connection to extraordinary individuals and a trusting heart that doesn’t judge. I see so many magnificent qualities in him.

But the reality is, it’s not all cake and rainbows.

The hardest part about raising a superhero is watching the battles they encounter daily.  There’s no way to truly document how that feels, as a mother, because it’s indescribable. However, watching your child discover the world in a way that most people could never imagine is the indescribable counterbalance to it all.

Everyone has their own philosophy on how to raise a child on the spectrum, and I respect that. For me, the question often isn’t about how to raise a child with autism. It’s how can I help foster his inner superhero? How can I help him  build upon the wonderful foundation he already has, and how can I help further develop the person that he is? It’s hard as an autism parent mostly because there’s a fine line between trying to help faciliate the kind of growth that will better prepare him for this world and how and when to let him soar and just be him. I think many parents of children on the spectrum struggle trying to find exactly where that line is in a life full of therapists and interventions.

You spend every day trying to live in what feels like the same world as your child. You spend countless hours lovingly trying to bring him/her into your world and stay there. A world that brings your child extreme discomfort and pain. To even make my first real connection with my son, I had to enter his world, and I think that should really count for something. I may be uncomfortable with his world because — just like my world is to him — it brings me extreme discomfort. But he loves his world, and I feel that has to count for a lot when deciding where that fine line is. To be honest, I don’t think we really live in different worlds; we just see and feel things differently.

As a parent of a child with autism you need to go outside your comfort zone and think more about when to help foster the inner superhero inside of them. You see, according to the dictionary, a superhero is a fictional hero, but I don’t agree. When I see my son, what he can do and how he perceives and combats the world on a daily basis, it’s clear to me that superheroes are indeed real. There’s nothing fictitious about them, and I couldn’t be prouder to be raising one.

This blog is dedicated to all the real-life superheroes and extraordinary children out there. May we all feel the blessings of your presence and the amazing qualities that you possess and bring to our world. Thank you for all that you do.

This post originally appeared on My Extraordinary Child.

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