To the Dad Who Felt Guilty for Not Knowing How to Raise a Child With Autism

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Dear Dad,

You and I have been through it all. Rather than feel sad about the time and laughs and talks we missed, I like to think about how much stronger the tie binds us has become. It’s been pulled, knotted and tested in every way possible. I know the autism diagnosis I received not even a month after my 21st birthday was one of the bigger stressors in our relationship. Autism combines amazing strengths and surprising deficits, and I’ve got both.

For a long time, I thought your distance was because you didn’t believe the diagnosis. That made me feel like you were denying just how hard some things are for me and just how great I am at others. It took me some years to realize that the reason you tip-toed around the a-word was not at all because you disagreed that I have a shockingly good memory, some mighty quirky social skills and a hard time communicating my emotions. The apple sure doesn’t fall far from the tree — and that’s just it. You knew that.

You knew there wasn’t a thing wrong with my social skills or my complete infatuation and insistence on talking about cats. You knew there wasn’t a thing wrong with the way I tended to lose control of myself when my emotions got too big and I could no longer put them into words. You knew I wasn’t broken. You knew I was a whole lot like you. The reason you were so wary of the word “autism” was because it carried a medical tone, and you never wanted me to see myself as diseased or broken or defective in any way. I didn’t need treatment and medications and cures — I needed to be supported in a different way, and the very first step in all of that was to know there was and is nothing wrong with me at all.

More recently, I’ve picked up on the ways you felt sad, maybe even guilty, about my life as a little one.  No one thought of autism when a 2-year-old girl talked about the life cycles of aphids or when a 4-year-old read chapter books on long car rides. No one thought of autism when that girl screamed bloody murder and then flat out refused to put on tights of any kind, or when she rejected every shoe in the store, or worse yet, when she refused every food option in the house. It wasn’t an issue of my autism being too subtle for anyone to recognize; it was an issue of many professionals being oblivious. They lauded my strengths, and they put the blame on me for my weaknesses. Try harder, you’re smart enough to know better, stop being so dramatic!

They told you to take control. They told you I’d eventually cave and eat all those foods my brain didn’t register as edible. They told you that when my ankles and knees and wrists hurt, that sometimes kids say those sorts of things for attention, and if I didn’t get any, I would stop.

I know it hurts you because I’ve heard you say so many times that you would have done so many things differently, had you just known. I know you see how much my little sister has been able to achieve since her struggles, though different, were identified earlier than mine.

But, Dad, here’s the thing, and please, listen closely: You did so much right.

christmas 2 years crop You knew that putting clothes on a kid that made her scream served absolutely no purpose except to show power over her. Out went the tags from all my shirts. You knew that starving a 3-year-old was completely senseless, that I wouldn’t have eaten a raw piece of broccoli if it was the one way available to save my own life. You knew that encouraging my quirky and intense interests was a fabulous way for me to learn far beyond on the classroom; we discussed Morse code, and I watched as you plotted a pin on a big map of the world every time you spoke with another person on your home-build radios. When I wanted to shave, just like Daddy, you didn’t explain that girls become women and that whole thing… you quickly came home with a kid’s shaving kit so I could shave with you. We cooked, and we camped, and, though it’s hard for me to believe I ever did, we inspected the grubs that came up in the soil when you worked in the garden. You wrapped my sore joints and gave me an ice pack. You played the song you wrote for me when I was a baby — no lyrics, just the most beautiful melody I’ve ever heard, and also one of my earliest memories.

You raised an Asperger kid in precisely the way I believe almost every kid should be raised. As an advocate. I engage with many parents and answer their questions about which therapies, which groups, which pre-set curricula to choose. I tell almost everyone that most kids need to talk to people in Bolivia on hand-built radios, then plot the spot on the map, and hold grubs in their hands, and listen to their very own lullabies and learn to find the keys on the piano.

There’s certainly a lot fighting against me to have any kind of normal life. But I cannot imagine a reality more incredible than the one I live. I have a Master’s, a great many irons in the fire that advocate for autism and fill my time with my greatest passion, and no kids but one delightful kitty. Not to mention, I have the confidence to tell everyone I meet all about that kitty of mine because my kitty obsession is what makes me who I am.

You never wanted me to think of myself as broken, and Dad, there is nothing broken about the way my brain processes the world. It’s just like yours, except I must have gotten the talking gene, whereas you got the listening one. Nothing makes me prouder than someone saying I’m just like my dad. So much of the person I am and the confidence in that person comes from the example you’ve set all these years.

If I could go back to diagnosis day, almost exactly six years ago, I would tell you all this right up front to save you the sadness of the time you didn’t know you’ve done everything just right.

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Why My Daughter's Unusual Reaction to a Change in Plans Was a Big Deal

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Screen Shot 2015-01-28 at 8.29.22 AM Life with my daughter, Bethany, is unfortunately not all roses and lollipops, that’s for sure! She has a tendency to be uncooperative, and she can throw some pretty mean and aggressive tantrums.

So it’s a major big deal when Bethany has an awesome minute of happiness and good behavior, let alone a whole weekend of pure stellar behavior bliss.

Let me tell ya, we don’t take good, happy moments with Bethany for granted, ever.

We celebrate every good and happy moment we happen to be blessed with.

This weekend was full of many such blissful moments, despite experiencing some near disastrous blunders cause by yours truly.

This weekend, Bethany managed a catastrophe well. In fact, she actually handled two catastrophes well.

On Sunday the plan was for Bethany’s aide, Kristin, to take her to the library and then to her special needs social group, Flash Club.

Except, I neglected to tell Kristin which library to go to. So naturally she took Bethany to the only one she knew existed, which was closed. She called me and I quickly told her which library to go to.

But then Bethany decided she didn’t want to go to the other library. She stubbornly dug in her heels and refused to budge off the closed library porch. She wanted to wait right there until it opened again… on Tuesday.

Thankfully, Dad just happened to drive by at the right time and saw Kristin trying to convince Bethany to get back in the car. They finally talked her into it and off they zoomed to the open library.

The fact that Bethany didn’t react to this unplanned incident by having a violent meltdown or a “stop and drop to the ground” moment is pretty phenomenal. She handled this glitch like a real trooper.

Later at Flash Club, Bethany experienced another glitch. I’d forgotten to pack her sneakers for basketball. All Bethany had to wear on her feet was snow boots. (I still can’t believe I forgot to send her sneakers with her!)

Her club leader just happened to have two pairs of sneakers with her and Bethany actually agreed to wear one of them — another unbelievable reaction.

Normally, unplanned changes in routine or incidents like these are catastrophic to Bethany and send her over the edge into despair and despondency.

But this time they didn’t. This time she handled them. This time she paused, took a deep breath and soldiered on.

This time she did not let a catastrophe ruin her life, hallelujah!

This post originally appeared on Faith, Hope and Love.

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When My Son Had a Public Meltdown, Everyone Stared and Judged. One Woman Didn't.

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My boys are only 19 months apart. Shortly after my oldest son’s second birthday, his meltdowns became increasingly explosive. I felt at a loss. Autism was not on our radar; I thought maybe my child was just willful.

One day I took the boys to the mall. We had a routine: we went to the play area, the store that had the Thomas the Tank Engine table, the fish tanks and the food court for a pretzel. I never realized, it but it was always in this order. But on this day I only planned on the play area because we were meeting the grandparents for lunch. I had no reason to believe it would be an issue.

I wore Eli in a sling carrier and held Andrew’s hand. Andrew was so excited because I usually took a stroller when going out in public. He played happily until it was time to go and willingly put on his shoes. So far so good. But when we walked out of the play area, I turned right instead of our typical left.

Then it began. Andrew started shouting and screaming, “No!” He threw himself on the floor in the middle of the mall and had a full-on meltdown. Having the baby in a sling, I couldn’t pick up my screaming toddler. Out of the corner of my eye I could see people shaking their heads and muttering.  I even heard one mother say, “My child would never do something like that.” I’m sure she meant for me to hear. I knelt by my son to try to reason with him or at least comfort him. He tried to hit me; now I was trying to protect Eli. All around me people were staring. It grew quiet as everyone stopped what they were doing. I wondered what I was doing wrong to have a child like this. I had no idea what to do next.

In the midst of this chaos, a tiny old lady tapped me on the shoulder.

“Sweetheart,” she said, “Let me hold the baby so you can tend to your son. I’ll sit right here on this bench next to you so you can see me. We’ll be fine.” It shows you my state of mind that I let her. She sat on the bench, her feet barely touching the ground and cuddled my little one. I gathered Andrew in my arms and carried him to the bench as he kicked and screamed. We sat there while he raged and cried. Every so often I would look at the old lady. She talked to Eli and made him laugh. In less than five minutes he was asleep in her arms.

I focused my attention on Andrew. I told him about going to see his grandparents and going to eat at his favorite restaurant. After what felt like an hour — but was really only 15 minutes — he was ready to go. As I took my sleeping baby from the old woman, she looked at me and said, “You were wonderful.  You never got angry, and you showed your son love. You are going to be just fine.”  Like that, she was gone.

That was the first time I realized my son might not be exactly typical. I didn’t know what was wrong, but I felt in my heart that something wasn’t quite right. I truly don’t know what I would have done without the help of this sweet woman. While others were judging me, she helped, and her compassion brings tears to my eyes to this day. Her words gave me strength and helped me persevere. Twelve years later, Andrew is an amazing young man, and we are fine.

She was right.

two boys at the zoo

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

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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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