boy holding an american girl doll

boy holding an american girl doll I shocked a lot of people in the American Girl store when I let my son Gavin pick out a doll. Most of the staff thought we were there just for his sister Kendall and he was there to be a supportive brother.

brother and sister with american girl doll bags

After the new catalog arrived at our house, they both asked if they could get a doll this weekend. I was happy to take Kendall because she had a gift card she’d anxiously been waiting to spend. But words cannot express the excitement I felt when when Gavin asked if he could get a doll too. 

It was only three years ago I sat with this same boy who lined up all of his toys in a row while trying to play. When my husband Doug and I would inquire with his therapy team why he did this, their response was hard to hear. They explained to us Gavin did not understand how to play with toys. To him, lining all of them up or grouping them by colors made sense. Beyond trying to teach him speech, OT, and social skills, they also spent time working with Gavin on understanding what it meant to play. 

When Gavin asked for a doll, it seriously warmed my heart. I wasn’t 100 percent sure he would actually play with it, but I figured we would see how he did at the store.

While Kendall debated about which doll she was going to get, we walked Gavin over to the Bitty Baby section. He immediately grabbed a baby off the shelf and started walking her around. He held her in his arms and hugged and tried to get her to go to sleep.

boy sleeping with his american girl doll

Sure, I could have taken him to another retailer afterwards and purchased a significantly cheaper doll for him, but this is this one he wanted and this moment was worth celebrating! Since purchasing our Bitty Baby doll this morning he has named her Baby Jenny. He has explained to all of us that her birthday is June 9 (she’s one month) and that he is her big brother.

As a society we encourage children to play with toys for several different reasons. There are toys that teach kids and there are toys that exist exclusively for them to have fun. Today I was able to watch Gavin excel in pretend play. Finding him snuggled up with his new baby doll tonight is a moment I didn’t even know I had been waiting for all these years.

His journey continues to surprise me and amaze me every day. I see a lot of Bitty Baby accessory shopping in our future. I can’t wait to sit back and watch his imagination take flight with Baby Jenny. 

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When I was growing up I never really had someone to look up to who was on the autism spectrum. For that reason I looked up to people like actor Will Smith, who had been able to overcome obstacles in his life. Early on, I saw the importance of having a role model and the positive impact on my own development. This theme later led me to become a mentor for those with autism.

Many of my mentees thoroughly enjoy pop culture. So when they were having trouble with bullying, I went to the internet to research celebrities who had become bullying ambassadors. The first name that popped up for me was none other than pop-sensation Lady Gaga. Gaga told Rolling Stone magazine that she used to be bullied in high school for having a big nose. Countless peers would call her names like “ugly.”

At first I didn’t know how to make the connection of Gaga to my mentees — until she came out with her smash hit song “Born This Way.”

The song is catchy but also has a positive lyric in it that really resonated with my mentees when I played them the song.

“There’s nothin’ wrong with lovin’ who you are” became something we would discuss in deeper detail.

As I continued to research celebrities, I found out that both Bruno Mars and Adam Levine had been victims of bullying as kids too.

I’ve taken these opportunities to learn more about each of their stories to educate my mentees and include them in talks I give around the country on bullying prevention based on my own experiences being bullied.

At the end of the day my message to our communities has always been the same. Most have been a victim of bullying at some point in their lives, but that doesn’t mean we can’t overcome these obstacles to find the beauty in ourselves. Some people who have been bullied have gone on to do amazing things. That potential is what I want my mentees to see every day. If I can leave them with that, I’ve done my job.

“It is important that we push the boundaries of love and acceptance. It is important that we spread tolerance and equality for all students.” – Lady Gaga

You can read a version of this piece on KerryMagro.com.

 


Last night, my husband and I almost had a fight over something I said to him.

I’m thankful after 27 years, he knew me well enough to know my intent wasn’t to hurt him.

I had a long day after a long two weeks, and I did not think I could do one more thing for anyone. I wanted him to know I needed a peaceful evening with nothing else added in. But the way it came out made him feel as if I thought he always comes barging in thoughtlessly demanding 50 different things from me when he gets home from work. Of course, that’s untrue. It hurt his feelings.

The thing is: I was trying to communicate well.

I thought I was doing fine. I thought I was being pleasant but still letting my spouse know what I needed.

Utter fail!

I didn’t greet him first, didn’t ask how his day was. I hugged him, but my words were, “I need to not have anyone demanding anything from me tonight.”

You’ve had days like that, I know. And it’s important to communicate your needs, so your spouse will know them. But this was not the way to do it.

I was mentally catapulted straight back into Mr. Dilbeck’s seventh grade social studies class. I was distraught because I had been told some boy liked me. The thought apparently terrified me, and I had no idea how to react. Other things upset me that day, and by the time I got to that afternoon class, I was a complete mess. When attendance was taken, in some sort of desperate attempt to get help, when my name was called, I didn’t say “Here.”  I said, “I’m here, but I wish I wasn’t.”

I stayed after class that day to discuss my disrespectful response,with a teacher who turned out be kind once I explained myself, but I learned there are certain forums which you don’t use for expressing personal angst.

At least, I thought I learned.

But I didn’t, fully.

That certainly wasn’t the only socially inappropriate thing I did as a teenager. By far. I rolled off my chair in a Sunday school class one time when I was just about dead with sleep and got my entire class in trouble.

I complained to my biology teacher that she didn’t care that I didn’t understand what she was talking about, and spent time helping her clean up and organize the lab as a way to make up for my misbehavior.

All this fallout was brought on by stressful situations overcoming my social abilities. My friends would ask me, “Why did you do that?” And in hindsight I always realized I should not have, but I never had any reasonable explanation for my behavior.

I obviously learned something from those experiences. But apparently not enough to only have one of those experiences.

There are other things that a neurotypical person may routinely expect to do that I cannot.

Autism takes away my ability to attend concerts and any large, loud or frenetic events. It’s scary and overwhelming.

While I rode my fantastic intellectual abilities to the top in high school and college, there aren’t any good grades to be had working and living and interacting with other people each day in the rest of one’s life. Autism means I cannot have a career which involves change, unpredictability, and random events. I think I’d say waitressing and air traffic control are out. I did work as a camp counselor, and I do have children, but I’m definitely done with the camp counselor days, and in my own family, we’ve all found ways to help each other out by keeping our general life routine pretty predictable. If work is changeable, it’s much too stressful, and while I can handle noise and chaos for a time and in some emergency situations, my tank drains rapidly.

Having autism means the ability to be flexible is extremely compromised. Friends, now you know why it is impossible to get me to do anything at the drop of a hat – except maybe go get an ice cream. If you think of it last minute, I say no. Sorry.

Autism takes away a natural ability to comprehend many of the mysterious ways relationships work. I work hard to maintain friendships. But if I have been mistaken in your level of interest, and you drift away from me, I won’t understand why. I just can’t comprehend how friendship could evaporate.

I still for the life of me cannot determine when people are being sincere. I’ve always been naïve, and while I thankfully haven’t ever been permanently damaged by that naïveté, I still routinely look forward to receiving future invitations that never come. A year later, I will finally realize t the person was dropping a meaningless social nicety when she said, “Let’s do this again soon.” And it’s not like I haven’t been told these kind of comments are almost never meant specifically and actually. I know that. It’s just that when I’ve wrapped up a fun time or an enjoyable conversation, my mind can’t detect any insincerity. Why wouldn’t we get together again soon? I actually spent about a year once waiting for two different people to get back to me about a proposed get together. Sure, some of that was depression, some was being stubborn, but what person really believes after a month has passed, she’d get an actual invitation?

No matter how old I get, I still say the wrong thing, even when I’m specifically trying to be appropriate and adult. Even when I try to communicate my thoughts and feelings, while maintaining respect for the other person’s position, or love for the other person, I fail to do so.

Offending people is the last thing I want to do. I’ve always wanted to be liked more than just about anything.

But sometimes, autism makes that impossible.

Despite my generally asking him to just look it up in the phone book, my husband still occasionally asks me for a phone number he needs. It kind of gets on my nerves when he expects me to provide Directory Assistance. At the same time, I smugly like being able to meet this need for him.

Same with names, places, and directions. For the first 40 years of my life, I’ve been quite good at hauling useful details out of the memory vault.

And I’m not sorry autism gave me that.

I write and draw, especially pencil drawings. My daughter, too, has an eye for small details, which allows her to draw well. I found when I was taking art in high school that my teacher was able to help me learn to draw well primarily because of his skill at walking his students through the process of making the thing appear on the paper in front of the artist. But it was also because I could see the tiny details of the object in front of me. I could see the highlight, the differences in shading on the surface of a vase, the small waves in the hair of a subject.

Autism gave me that.

I could listen to the back-and-forth of banter between friends or the argument of a couple in passing on the street or in a restaurant and replicate that in a short story later.

Autism gave me that.

I had the focus to not let go of a question about what had happened to me. As my doula said, I held on to the “why” of a difficult birth like a bulldog, and I didn’t let it go until I got answers.

Autism gave me that.

I researched what had happened and was obsessed with finding a better way to have a less difficult pregnancy. I succeeded.

Autism gave me that.

I am a loyal friend, who tends not to give up on people and who stays in touch through the years. I try not to abandon anyone, especially people who have been good and kind to me.  Is that such a bad thing?

Autism gave me that.

Follow this journey on Joy in the Journey.


woman with asperger's syndrome When I was in elementary school, I was diagnosed with speech and hearing problems, and “giftedness” (whatever that is). Since it was 1960s in rural Oregon, there weren’t a lot of resources to deal with things like that. I did have speech and hearing therapy and a supply closet by the nurse’s office that was dark and quiet. I was allowed to hide in it when things got to be too much, which was several times a week. Because of family problems, we changed schools a lot.

If I got agitated, teachers often just gave me a big book and let me go somewhere quiet. That was how I got through school. I was good at taking tests. I got A’s on everything except math and PE.

The real diagnosis came in my 40s when I was recognized as autistic by a friend based on a magazine article he’d read. I didn’t even know what autistic was. I pictured someone who didn’t talk except to memorize calendars and phone books. But of course I went to the internet and typed in the words my friend had found, “Asperger’s syndrome,” and poof, there I was in a hundred other people’s life stories. 

and from somewhere in my brain I remembered that as a kid I did read phone books…

and made my own system of calendars…

and didn’t talk except in TV dialog… 

and rarely to other people…

because they made fun of me for being “weird” and reading phone books.

OK. 

It was true. 

Damn.

For one little minute, I felt the warm glow of camaraderie, discovery and explanation.

And then the rage took over. I would never “grow out of it” or “get my sh*t together.” I thought I would never truly grow up, get real, get a job, get a life, become “normal” enough to fit somewhere. I mean, here I was, 40-something years old with one failed marriage. I’d dropped out of community college because of fear of people. I had two bankruptcies and experienced depression. I’d self-medicated with alcohol. My life felt like it was always on the edge of disaster. I was overloaded and still magically hoping the “phase” I was going through would wear off someday and a regular, responsible adult would pop out.

Here was the proof that it most likely wouldn’t happen any time soon. That odd force I’d always referred to as “the Glass Hand” was autism. It made my body floppy and slouchy. It held me back when I tried to run. It made me walk with a lurch and talk in funny voices. It made me feel trapped in my body. It made the world too loud, too bright, too leeringly social, and too tormentingly mean. It squeezed my breath out in crowds. It dried my tongue and wiped my mind when speech was necessary. It pinched me and caused me to yell and shriek and lash out when the sensory input got to be too much.

Even when people I loved begged me to be quiet.

It was forever.

The formal diagnosis was my mother’s doing. All her life she’d been wondering what was so odd about her firstborn. “She’s just different, that’s all!” she’d say somewhat defiantly to people who asked, “Um… what’s up with the weird kid?”

So I felt obliged to share the new information with her, help her resolve the mystery. She seized on it. She cranked up phone calls and paperwork, engaged the Department of Human Services.

My formal diagnosis was at the hands of a government-appointed psychologist. Mom paid for a second opinion by a private doctor to “make sure” and strengthen the case. Both diagnoses said the same: Asperger’s, anxiety disorder, sensory processing disorder, especially auditory. High IQ, low social skills. 

She’s just different, that’s all.

Sometimes I still don’t believe those diagnoses. I think if I just try harder everything will pull together and just work somehow. Then I laugh.

I am in my 40s. I feel reborn. I have new information, I have a new beginning. I can make a meaningful existence for myself. But not by continued attempts to run a neurotypical script in an autistic brain, no matter how heroically executed, no matter how any times I try, try again. A diagnosis is not an excuse for failure. It’s a clue that the person might need a different approach to success.


There are few things that really get to me. Working in social media, I scroll through countless offensive and generally awful things on a daily basis. You learn quickly to let things roll off your back or you’ll just feel down all the time. But when I came across this meme while scrolling through my personal Facebook feed, it really hit home. It says, “What if I told you autism parents are just martyr mommies?”

Martyr Mommies meme

Let me be clear: Having children with autism does not make me a “martyr mommy.”

I’m going to address step-by-step why this is offensive because I really don’t think there was malicious intent by the person in my feed. I think we all have things to learn about situations which are unfamiliar to us, so let’s learn together.

This meme says I cannot talk about my children because they happen to have autism. My children are autistic. If you’ve followed our family for any length of time, you know we celebrate our children for who they are. Autism happens to be part of who they are. Every single parent deserves to talk about and celebrate their child(ren). A child’s disability should never limit a parent from talking about their achievements or family experiences. Like every parent, I will choose to protect my child’s privacy; but I will not be silent about my children just because of their disabilities.

This meme says if I choose to talk about our family life, I am choosing to be a martyr. Life with autism comes with joys and struggles. Every single parent of a child with autism can tell you that. I do not share everything (people who would agree with the meme above couldn’t handle the whole picture), but I do share some of it because that is our life. I protect my children’s privacy here while also being honest about certain challenges we face. I have never once considered myself a martyr. I am a mother. My children face unique challenges. I parent them through it. That is the reality of our life, and not once do I ever want a person to pity us for it. That is the exact opposite of what I am about.

This meme says I should be ashamed of my family. According to this meme, I better not share a single thing about myself, my children, or our family life or I shall be considered a martyr. To me, this is the most offensive part of it all. If you think I should be ashamed of my beautiful, awesome family, that’s on you, not me. I celebrate every single part of our family.

My children are my world. They have autism. I am their proud mother. I changed the meme to a more appropriate representation of our lives. You’re welcome.

Autism Parents are Proud Parents


A week ago, my husband was stuck in traffic for over an hour just trying to get home from work. He was stuck at a place on his commute that is usually only five minutes or so from our driveway. We’re living right on a busy street undergoing a huge overhaul at this very moment.

Being the social media queen I am, I updated him on all the complaints I saw on Facebook and how long other people were stuck. Being the comedian he is, he sent me texts asking how long I thought he could live on a half-bottle of water and one protein bar.

But he came home smiling (because he has this positive outlook about how beautiful the roads are going to be when it’s done) and joined us on the front stoop, where our son Brian was in his glory, watching construction vehicles do their thing basically right in our front yard. We laughed over how happy Brian was with the whole ordeal when it seemed like the rest of the world (or our little corner of the world) was not too happy. I filmed Brian flapping and laughing and jumping with joy.

And then I shared it along with the caption: “I’m sorry to everyone who is completely annoyed by the cluster this construction is making….but it sure is making one autistic boy very happy that he can sit right on his doorstep and watch bulldozers and dump trucks.”

I sent it along to the Thomaston Rte 1 Project, thanking them for making our little boy happy. I figured in a sea of complaints, they deserved to see someone happy. I figured it was a thankless job the construction workers were undertaking.

It was only a day later that a woman named Audrey wrote me back that she had shared it with the construction crew, and they were so touched, they wanted to meet Brian and make him an honorary Lane Construction team member.

Last night among family and friends, we brought Brian to the construction site to meet several Lane Construction employees. One of the employees called me a few days prior wanting to know about Brian and his autism and what to expect. They went out of their way to understand him, and I warned them that the whole meeting may be overwhelming, and though he loves to watch the trucks, he may be a little scared to go in one.

They had a bag full of goodies for Brian, complete with all the construction gear he would need to be a team member. They even gave him his own hard hat with his name on it.

A construction worker handing the author's son a bag

They asked him if he wanted to ride in the water truck. All week we’d been reading a social story I had made him about seeing and riding in the water truck. At home, he told me he wanted to ride in the truck. But at the site, after seeing it, he clearly said, “No, thanks!”

A man standing near the door of a red construction truck, holding his hand out to the author's son

We all laughed, and the team asked if he wanted to see it go and spray water. He was OK with that option. A team member drove it up and down the road, spraying water, making most of us wish we had rolled up the windows in our car. But after watching Brian flap and jump and laugh over the vehicle, we didn’t really care about the windows.

The Lane Construction men were so patient with Brian. Eventually Brian got in the water truck while it was parked and operated the lever that made the water spray and figured out the horn. After that, there was no stopping him from climbing in to spray the water. He ran around in euphoria watching the water flow from the water truck. Brian’s three biggest loves are vehicles, water and zoo animals. All we needed was a zebra and it would’ve been the perfect trifecta.

They had several other parked construction vehicles that Brian loudly said, “No, thanks!” about climbing in. But again, the team was so great and so patient, and they waited him out. And then, when he was ready and comfortable, he climbed into each (parked and not running) with the best grin on his face.

At some point, I figured we’d get some bored and tired team members. I wasn’t sure if this was more about positive publicity (which is good too, I think they construction workers deserve a break) than providing Brian with an amazing evening.  But we never hit that roadblock. It was clear, minutes in to the evening, that this was truly about Brian. Every person there was so genuinely happy just to be there and to watch Brian. No one was on a time schedule, and they bent over backwards to make sure it was all about Brian and did whatever it took to make him happy.

A moment like this means the world to our family. Seeing Brian noticed and honored for who he is means everything.

Who would’ve thought us sending a simple thank you to the construction workers would lead to them giving Brian the best “thank you” we could’ve ever hoped for? Brian’s smile clearly says it all.

Side-by-side photos of a boy wearing a hat that says Lane and a bright yellow vest and a hard hat

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