A Letter to My Autistic Son's 2nd Grade Teacher, Whom I Have Yet to Meet

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Dear second grade teacher,

Today I learned the mail is not delivered to our end of the development until almost 4 (a time I would almost consider evening, and not afternoon). I learned this today because I joined with the other parents in Loudoun County in anxiously awaiting the arrival of a letter from school — a letter that promised all kinds of important information about the first days of the new year. 

And so it was today, at almost 4 in the late afternoon, that I saw your name for the first time at the top of a generic form letter — a generic letter in an envelope with three pieces of paper, none of them truly specific to my child. Just another invite to the school’s open house. Just another kid with a bag full of composition books and Kleenex, making his way to a second grade classroom.     

Something about the sight of that thin envelope against the backdrop of IEPs, FBAs, BIPs and all the other acronyms that accompany my child into this adventure, made my heart sing and ache in the same beat.  

So… hi!      

I’ll give you a minute to catch your breath. I know you are busy and everyone wants your attention. You won’t see us grappling for face time with you this week. We’ve got a whole year before us, and this isn’t my first rodeo.  

I know he’s a lot (and he comes by that honestly, you’ll find). 

I know you don’t even know what questions to ask yet (you probably like to get to know the students before you go through all the paperwork). 

I know you think you’ve got it all squared away (and I like that about you!).

I know you’ve taught lots of kids like him over the years…

(But you haven’t. You really haven’t.)

I know you’ll know how to reach me when the parentheses catch up with you and the strategies stop working and you are left with this spicy, brilliant boy, who will be rewriting the rules faster than you can learn them.

little boy with autism on the computer

I wonder how much you may already know about Danny. This will be his third year at this school, and he doesn’t fade into the background easily. I wonder if you are excited to have him in your class or if you are a little panicked about it. I certainly wouldn’t blame you if you were… I panic sometimes when I take him to Target and all I’m trying to do is get out of there without him touching the bikes. He is a handful, no doubt about it and, even better, he is a handful I am pressing right into your palms by requesting he attend your school even though we don’t live in the neighborhood. In these first days he may make your job harder. He may make your days longer. He may make your lessons feel less effective. You may question at least once a day if he is really in the right class.

His Dad and I… we know this. We’ve been down this road before.

This will be Danny’s eighth first day of school (I count the summers because he does) since he qualified for the county’s preschool when he was 3 years old. For parents of children with special needs, these first days pale in comparison to the weight of eligibility determinations and IEP meetings. We know better than to hang our hopes on an amazing first day or to believe those first six hours matter much at all in the long run.

We know we don’t always make great first impressions. We know we have to give it time. We know this partnership is unlikely to hit it its stride in the first sprint. 

As we prepare for this next first, I want you to know I get it and I am in your corner. I will read your emails, I will fill out the forms, I will come to the conferences and I will answer the questions. I will trust you. If you tell me about it, I will talk about what happens in the classroom at home so Danny will know his Dad and I are serious about his relationship with school and with you. When you are frustrated, we will listen. When he is lost, we will help you find him. 

little boy with autism at school near the window

I also want you to know, though I only know your name, I am grateful for you. I am grateful for the calling on your life and how it has caused our paths to cross in this moment.    

Thank you for reading all those packets of paper that are always inconveniently stapled and double sided. Thank you for writing sub plans for all of the meetings we are going to need you to attend, for writing emails in all caps when he blows us away and for speaking gently when the words are hard to hear. Thank you for the breaths you will take to keep your cool when Danny’s calm explodes in tears and stims over something you can’t understand.  

Thank you for listening to the journey. Thank you for celebrating with us when he says something wonderful because you remember how I told you about those years with no words. Thank you for acknowledging our history, for seeing that we what we have given autism over the years is directly proportional to what we have been unwilling to let it take. 

Thank you for understanding I am not sorry – not the least bit sorry – for what Danny is going to bring into your class and into your life. Thank you for making a place for him in your class and for helping us make the most of this thin moment in the wide, general education, world. 

He may make your job harder, but brighter. He may make your days longer, but richer. You may see his classmates find compassion and friendship where they had first found only frustration.     

He is one of a kind.

He is our world. 

And he is so excited to meet you.  

Follow this journey on Joyful Noise.

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When I Told a Solicitor My Greatest Fears as a Mom to an Autistic Adult

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Every few months for the past 10 years, Evie from AMVETS calls to ask for a donation. She is 97 years old and has been soliciting for the veterans for over 30 years. I never turn her down, even if I have to raid my husband’s closet to fill a bag.

Our interactions have grown through the years from confirmation of address and pickup time to lingering, affectionate chats. I’ve learned, for instance, she has five children and 12 grandchildren, one of whom graduated from University of Chicago last spring. I don’t rush off the phone when Evie calls, no matter what I’m doing, mindful that each comforting connection may be our last.

Her call last Thursday was a welcome reprieve from the fruitless knot of writing I’ve been tangled in for weeks, work on an piece that has failed to come together despite dogged attempts to force its cohesion. Although my donation bin out in the garage was empty, I told her I’d come up with something.

“Anything is welcome,” she affirmed, as she always does. “Clothing, books.  Old toys — we can use anything.”

“Well, my children are 26 and 24,” I replied with a chuckle. “So I don’t have too many toys around the house anymore.”

She continued her gentle coaxing, even though I’d already agreed to a donation. “Children’s books are good. And stuffed animals are always appreciated.”

I thought of my son’s bedroom upstairs, the built-in shelves lining one wall still filled with plush animals of various species. A lifelike lion sprawls regally across the twin bed; a 5-foot-tall giraffe gazes out the front window, a gift from my mother-in-law the last Christmas before Daniel left home.

Suddenly I was confiding in a woman I’ve never met, but who’s been a fixture in my life for a decade.

“You know, Evie, my son has autism and hasn’t lived with me for over eight years. But his room is the same as it used to be. It’s filled with stuffed animals I can’t bring myself to give away.”

In a rush, I continued, explaining I’m a blogger and had been trying when she called to write about pain I can’t relinquish, nor find words adequate to explain.

“I don’t know what’s the matter with me, Evie,” I went on tearfully. “I know he’s not coming home. He’s never coming home, but I’m still waiting. I’m still waiting for it to be different.” My voice broke. “I can’t let go of him.”

Evie replied without hesitation. “Of course you can’t,” she declared. “You carried him. He’s a part of you. He’ll always be a part of you.”

We talked for some time, about loss, what it takes and what it leaves behind. “You are stronger for what you’ve gone through,” she observed, the experience of nearly a century lending new credence to the words. “But you don’t ever let go of what you feel for your child. He is always a part of you.”

In the weeks following Daniel’s move to a therapeutic residential school, I spent many nights curled in his bed, lost to grief, laden with treacherous, guilty relief that I could now relinquish the rigors of his care. I knew I’d needed help. That didn’t ease the burden of failure, though — the awful acknowledgement my best efforts weren’t enough.

Surrounded by the mementos of his life with me, I let the sorrow flow. My eyes fell on photos of his special ed peers, his middle school diploma, a worn communication notebook from the fourth grade. I held the photo of a dolphin leaping from the water at the Shedd Aquarium, a clipping from the Chicago Tribune he’d often pull from his nightstand and ask, hopefully, “Fish?”

His animal collection, amassed over 15 years, peered down at me. The swivel-headed owl; the wolf, its head thrown back in a howl Daniel had learned to imitate; the spotted pony, a token of our joy at his first coherent word as a toddler, “Horse!”

How can I let go of these companions, tossed countless nights across his bed, before we turned off the light for sleep, Daniel calling each one by name? “Bear!” “Sheep!” “Frog!”  Again and again I’d lob the soft toys until he was surrounded, giggling and gleeful and snug in their comfort — a treasured ritual of our uncommon life, a period of laughter and happiness, soothing whatever trials the day, now gone, had rendered.

dan with stuffed animals

It’s long been my plan to refit Daniel’s bedroom into an office, keeping his bed in place, while filling the shelves now housing his animals with the dozens of books stacked in piles on my own bedroom floor. It would be a fitting space for me to write, to wrestle the ongoing themes that have shaped my life, to draw meaning from circumstances I still struggle to understand.

I can’t bring myself to do it, though, to symbolically sever a tie that has been loosening on its own, bit by bit, for years, to grant permanence to a truth I’ve tried to deny for half my lifetime.

If I’m honest, Daniel himself probably wouldn’t object to the change to his old bedroom. He once raced through the house on his visits home, darting into each room as though confirming the accuracy of his memories. On his last visit, though, I had to coax him upstairs, where he studied the souvenirs of his childhood with mild interest, humoring me, it appeared, more than savoring a time now past. He seems to recognize this as home but a home he doesn’t live in any more. And that’s OK with him. He’s moving on, just as he should, as he must.

I told Evie I’d try to choose an animal or two to donate this time, and she told me not to worry; I would do it when I was ready, if I am ever ready at all.

I don’t know when this will be. Part of me still clutches the slender reed of hope that he’ll return home. I’m still waiting for another chance. I still want him back with me again.

This is unlikely, irrational. Futile, even. I know this; I do.

Yet hope is relentless. Perhaps that’s how it must be, too.

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How 'The Babysitter's Club' Started a Lifetime of Learning About Autism

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I was pretty obsessed with “The Babysitter’s Club” book series when I was young. I read them voraciously and repetitively, eagerly anticipating each new installment in the series. Book #32, for those of you who may not recall, was titled “Kristy and the Secret of Susan.” It told about a child with a diagnosis which I’d never heard: autism.

Susan was very limited in her communication but exhibited what would be considered “savant” behaviors – playing the piano and memorizing dates on the calendar. I wish the character had been more like other people with autism I’d probably met; it would be years until I realized I’d had experiences with people on the autism spectrum, often without realizing it.

In sixth grade, there was this kid who was, well, kind of different. He was really, really into trucks. He wanted to be a semi-truck driver when he grew up, and would often be reprimanded in class for drawing pictures of trucks (from a variety of angles and in varying colors) instead of doing classwork. He rarely talked to anyone unless it was about trucks. I regarded him with caution and kept my distance. I was most concerned with not drawing attention to myself within the caste system of middle school, and this boy was often treated less than kindly by my peers.

I spent my summers in high school and college as a lifeguard. We called one of the guards “Robo-guard.” He was an extreme rule follower and carried his lifeguard whistle with an air of authority that made the rest of us laugh behind his back. He had awkward body language and often didn’t make eye contact when having a conversation. His face always carried the same expression: stern. He seemed oblivious to the mild harassment he faced from the rest of the staff; however, when he was on the lifeguard chair, we knew his eyes wouldn’t waver from maintaining the safety of his area.

As a newbie elementary school teacher, I had a child in my class who was as sweet as could be. He was compliant, if sometimes distracted, and didn’t make friends easily, although he wasn’t disliked. Every morning he wanted to come in and tell me about his cats. Sometimes, when he thought nobody was watching, I would see him imitating the moves of a cat, pretending to groom the outer edges of his face with the back of his hand. I’ll never forget the day the school counselor came to me and said, “I think he has a form of autism that I was just learning about at a conference. It is called Asperger’s.” She instructed me on some of the signs: he often flapped his hands in front of his face, especially when he was excited; he preferred to look at the floor instead of at me when we would speak; he had a clear perseverative interest in cats.

I had never heard of Asperger’s before. I was a certified teacher and this was 2001. My only experience and knowledge with autism was related to much more pronounced examples: the girl from “The Babysitter’s Club” book, the movie “Rain Man,” and a single chapter in an undergraduate course on Education of the Exceptional Child.

Since that time, I’ve had the wonderful experience of working with many children and teens on the autism spectrum. I worked as a teacher in gifted education programs where we seemed to get a lot of “quirky” kids. I’ve learned to love and work with each and every one of their individual personalities. Now, as a mental health counselor, I have the unbeatable job of working with them in a therapeutic setting.

I have two thoughts about what I’ve learned about autism/Asperger’s that I’d like to share with parents and teachers.

The first would be this: autism (or Asperger’s) doesn’t look like one thing. Not all individuals with autism are introverted; not all of them have obvious sensory needs. Some people on the autism spectrum have trouble making eye contact; others have no trouble with this, but can’t understand sarcasm or nuance in conversation. There is as much variability in the signs of autism as there are individuals who have it.

The second thing I’d offer is not to be afraid of a diagnosis. A diagnosis of autism is simply a way to help understand how a person’s brain works. I see a lot of the stigma that families experience when faced with a possible autism diagnosis, especially within the gifted/talented community (my specialization). Families understandably don’t want to think there is anything “wrong” with their child. I prefer to help them see and build on the strengths that individuals with autism often have.

A diagnosis can also help the person on the autism spectrum understand why he or she is a little different. A fourth grade client who is both gifted and on the autism spectrum wrote these words in a letter to his teacher at the end of the year after he’d been diagnosed: “I must thank you for helping me get on with school. If you hadn’t helped me, the school year would have been a long 174 days of running out of the classroom… I didn’t like that I didn’t know about my autism symptoms until the school year was almost half of the way done. Rather annoying if you ask me.” Learning more about his diagnosis allowed him to better understand himself. How could that possibly be a bad thing?

This story originally appeared on The Mind Matters.

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When My Son With Autism Surprised Me at a Wedding

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My niece, who is more like a daughter to me, got married this weekend, a huge affair with loads of people and loud music. My son, a 15-year-old boy on the autism spectrum, was a groomsman in the wedding. It was also the hottest day of the year up here in the northeast. With the heat index, it was 110 degrees at noon and still 100 degrees at 7 p.m. And he was in a tuxedo.

We started off the day rushing around to be able to board a bus to get to the park around 3 to take pictures, where the photographer dragged us from one end of the park to the other requesting that my son make a lot of different poses. I found myself thinking, “I wonder if this guy knows he has autism because this could end badly.” After an hour, with all the photos taken, we got on the bus and my son took out his phone and started taking pictures and laughing. I think he had just about been pushed to his limit at the park, but he held it together. I was so surprised and so proud of him.

dad and son with autism at the wedding
Me and John

We went from the park to the venue where the wedding and reception were being held, and after a brief respite we had to go outside for the ceremony again. It was still blazing hot. Sweat was rolling off people in buckets, and my son was supposed to stand up there, still in a tuxedo, in a line with the other groomsmen and hold it together while the ceremony went on. I found myself thinking “I hope everyone in the audience knows he has autism because this could end badly.” But then the ceremony was over, and he had stood pretty much perfectly still the whole time. He went inside, found his date (another first) and walked her around the cocktail hour taking pictures and making sure she met every member of the family. Smiling and laughing the whole time. I was so surprised and so proud of him.

After an hour in that room, the reception started. He walked in and was announced into the reception with the bridal party, after waiting in yet another line to get in. The music was mellow at first, but then the party kicked into high gear. The music got loud and bass heavy. He took to the dance floor some with his date; they danced and laughed. They went to the photo booth. They enjoyed the party. About an hour and a half before the party ended, I realized he had left the table and wasn’t anywhere in the room, so we went looking. He was in the lobby. He told us the music was just too loud so he walked out there.

As I reflect back upon seeing him in that lobby chair, still pretty happy but just doing what he needed to do, I realize it’s a moment I’m immensely proud of him for on top of a day I was already immensely proud of him for. He had his limits pushed all day. He got through all the important parts. He stayed engaged for as long as he could. When he felt like he couldn’t do it anymore he found a way to solve the problem all on his own. It was true autonomy.

One day I won’t be here anymore, and that’s a thought that’s usually never far from my mind. Days like this, however, help to push that thought out of my head sometimes. Just for a while, my mind takes a little rest, and I have a little hope that he’ll be OK when that time comes. These fleeting moments of peace of mind are a gift from him to me that he doesn’t even know he gives, and I love him for it. I think now, what I need to give back to him, is to stop thinking so often that things could end badly.

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How Autism 'Awareness' and the School System Failed My Brother and Me

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There is a photo of me at 3 years old. I am standing in a meadow on the tips of my toes, arms scrunched up like a t-rex, hands blurred from excitedly flapping.“You were so cute!” my family members coo when they pass this photo. These are the same people who look at me and say, “You can’t be autistic, you’re a girl!”

I hit developmental milestones quite differently than others. For instance, I never learned to crawl forwards, I was speaking complete sentences at a year old and reading books by 3. I wasn’t potty trained until I was almost 4 and said to my mother, “I am finished with diapers,” and that was it. I would bolt and hide in clothing racks in stores and cry when my parents made me try something new.

Sensory wise, I was notoriously known for my aversion to dirt, anything soft, loud noises, flashing lights, and many other things. I walked on my tip-toes constantly, chewed apart all of my shirts and gel toys, rocked and spun enthusiastically. I struggled with math concepts to the point where I barely skimmed by. I used to cry constantly in preschool and elementary because I couldn’t regulate my sensory system or handle my surroundings. I was often in the principal’s office because teachers misunderstood me trying to comprehend with me being insubordinate. In middle school, when a psychologist brought up Asperger’s syndrome with my mother, she laughed and called him “crazy.”

My brother is a different story. He didn’t speak coherently until he was 4. He flapped his hands, walked on his toes, and would bolt down the street and away from my mom so often that he had to wear a leash in public. No matter the lock we tried, he would take it apart just for fun and giggle as my mom scrambled up the street to catch him as he ran right towards the backyard pond. He would find anything he could stack and climb on, often climbing on the coffee table and diving into the floor or couch. My parents covered our tiles floors with foam mats and made him wear a helmet when he was particularly riled up. He attended speech therapy, but never had a psych evaluation. Throughout elementary school, my brother struggled to pass and was a renowned trouble-maker. Our mother asked for an evaluation every year, and every year his teacher would say, “He just needs more discipline.”

It wasn’t until April of this year that my brother and I were finally diagnosed, at the ages of 18 and 12. I am diagnosed with autism spectrum disorder (ASD), obsessive-compulsive disorder (OCD), generalized anxiety disorder (GAD), and dyscalculia. My brother is diagnosed with ASD, ADHD, global developmental delay (GDD), dyscalculia, dyslexia, and dysgraphia. We both desperately needed IEPs and accommodations, but he didn’t get his until this year, and I was too far into my education to get the help that would have allowed me to achieve exponentially higher.

We need to reform the way we treat our children in the education system, and promote autism acceptance. We need to stop the fear-mongering that often comes with the “awareness” campaigns and scares parents away from helping their children and seeking a diagnosis.

We need to tell parents: this is your child, he is not broken, and she just needs different accommodations than others.

We need to teach people about the entire spectrum and how to love and accept those on it. We need to be more proactive in diagnosing autism in girls and reforming the way teachers recognize children on the spectrum.

We are not bad people. We are autistic, and we need to be seen and heard.

Image via Thinkstock.

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To the Husband Who Became an 'Autism Daddy,' From Your Wife on Our Anniversary

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Today is my 11th wedding anniversary. As I stare at a random picture of our wedding day, I think back to how much we still did not know about each other. Over a decade has passed, and he constantly surprises me by revealing the depth of his character to our girls and me each and every day. I have asked him from time to time if he knew how our life was going to turn out would he still have said, “I do.” He never misses a beat and always says, “best decision I ever made.”

wedding photo

To understand how deep my appreciation and love for this man is, you would have to know his background. I met my husband when he was already a combat veteran assigned to the 3rd Ranger Battalion. He was built like a brick and had a no nonsense Ranger attitude. He was a serious, competitive and determined person. Physical fitness was of the utmost importance to him, and he strived for excellence in everything he would do. He was a complete gentleman towards me, and for the first time in my life I felt cherished by a man. We only dated six months before he asked me to marry him, I immediately said yes.

Five years later my husband was knocking out every bit of his five-year plan he set forth before we were married. When it was time, we tried to start a family. We got pregnant easily with our first daughter, Gabby. When she was born, my husband was just starting his new career as a Federal Agent for the U.S. Government. He was working nonstop. The drive in him to provide well for our little family pushed him to take every available overtime job. He wanted me to stay home with our new baby girl and care for her. He was adamant about shouldering the complete financial burden of our family.

He and I both knew something was different with our little girl right from the start. To say our child was fussy would be an understatement. She would not sleep and would scream day and night until she would pass out from exhaustion. The only way to comfort her was to rock her incessantly or drive her around in a car. This lasted for two years. When she started missing all her milestones, we took her to a therapy center. Some time passed before they gave us her diagnosis. She is on the autism spectrum, and has ADHD, anxiety, panic Disorder and lack of coordination.

When he received the news I knew deep down he felt devastated, but outwardly you would have never known. He thanked the medical professionals who gave us the news, scooped his daughter up and drove us home. In the weeks and months that followed, he held our family together. While I struggled, he kept going like nothing had changed. The only reason I knew it had affected him was when I would find him in his office late at night reading the internet about “ways to improve a life for an autistic child.”

I always say he took the autism diagnosis on the chin. He never faltered or wavered. He would talk to anyone he met about our little girl. He was proud as punch about her being able to finally successfully complete a feat a neuotypical child may have done years earlier. This incredibly competitive man was tickled when his daughter could finally ride a trike instead of a bike with training wheels.

daughter mowing the lawn with daddy

His patience and understanding for our little girl has been humbling to watch. He is a proud autism daddy. While he normally wears a North Face t-shirt, every once in a while I see him sporting a shirt with a puzzle piece on it. He will enter races for charity to support Autism Speaks and any other disability-related cause. He is a favorite at my daughter’s autism school, bringing in truckloads of snacks for the kids monthly. He smiles and gets down to their level and always makes each and every one of them feel special. He talks about ways to increase his retirement pension to be able to provide for our daughter in the future. He constantly throws out ideas about how, if we win the lottery, we could buy property and build facilities to teach and educate children and adults with disabilities about life-skills, fitness and education.

Although the statistics say a marriage is much more likely to end in divorce if you have a child with a disability, he has constantly shown me his sticking power. His word is his bond, and he has no intention of ever wavering. Our marriage is far from perfect. If anything, it’s perfectly flawed. We are just two imperfect people who have never quit on each other. Even when I have wavered, he has carried our family on his broad shoulders forward. I am truly blessed to be married to this man, and our daughters are extremely lucky to have him as a father.

You don’t read many stories about fathers who are going above and beyond to care for their disabled daughter. You often hear about mothers who are soldiering forward, carrying the weight of special needs parenting all by themselves. Mothers are usually the focus of stories about special needs parenting. So I wanted to share with you our story in hopes that it will shed light on other fathers and males who have taken up the role of autism daddy — the parents like my husband, who are doing it so well.

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