Teacher talking in front of students in classroom

A Letter to Teachers of Students on the Autism Spectrum, From a Mom

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When my son was in school 21 years ago, we didn’t know he was on the autism spectrum. What we did know was that he had some learning disabilities that made it difficult for him to function in a traditional classroom without extra support.

My son loved to learn! But at one school, he struggled with teachers who practiced “old school” teaching methods, teachers who wouldn’t acknowledge that he had a different way of learning. I’ll never forget the time he came home after school so sad and upset. When I asked him what happened, he told me that his lab partner in science class complained he wasn’t doing his fair share of the work. The lab partner he was assigned was the same boy who taunted and teased him on the playground. Instead of teaching his lab partner about patience and compassion for my son’s challenges, the teacher told my son he had to work alone. When I went to speak with this teacher, the teacher was unwilling to budge — but the next day, my son was given two new lab partners (two boys who were always kind and friendly to him).

We took my son out of that school and found a school with teachers who embraced his learning style and accepted him for who he was. No, that’s not quite right. They adored and admired him for who he was. They didn’t punish him for the way his brain worked. They nurtured and believed in him. They proved to him that he was smart and talented. And guess what? He became student of the year and went on to graduate from college with honors.

He may not remember his experience at the other school, but I’ll never forget. I use the memory as motivation to do whatever I can to make sure no other child with autism is labeled or misunderstood.

Dear teachers of students on the autism spectrum:

It’s been years since my son was in elementary school, and I hope that there is more awareness out there. I think it varies from school to school, so here are some words of advice I hope you’ll consider:

Delve deeper. If a student doesn’t fit a “typical” profile, don’t automatically assume they are “lazy” and don’t want to do the work. I wish my son’s teacher had called me to discuss the issue before acting.

Create partnerships, not adversaries. The teachers at my son’s second school were nurturing and made me a part of their team. Instead of feeling at odds, we worked in tandem creating a supportive environment for my son. He thrived.

Give a child with learning challenges other ways to do their work and take tests. It isn’t “unfair” or cheating. It’ll give that student a chance to show you that they have indeed learned what you’ve taught them.

Don’t wait until parent conferences. Set up regular check-ins and communication with your autistic student’s parents. If I had known that the science teacher was going to be assigning lab partners, I could have let the teacher know this would be a challenge for my son.

Your actions have impact. Be the teacher who makes the positive impact your student (and his family) will remember with gratitude forever. Your words and your actions matter.

Note for parents and teachers: On my Geek Club Books autism nonprofit blog, I asked two of our autistic writers with experience in early education to write “What Your Autistic Students Want You to Know.” Read what they have to say and get the free guide with more of their advice and tips. Geek Club Books for Autism is part of The Mighty Partner Program.

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Image via Thinkstock Images

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What I Realized When Anxiety Changed Our Trip Plans

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I had done all the research. I had planned and picked out the agenda. Found the perfect hotel. I had even made an awesome Social Story with the cool app I have. I used actual pictures of the inside of the hotel because I knew he would ask. He would need to know every last detail. I had pictures of the pool, the outside of the hotel and the lobby. Yes, I had lists of all the stores and restaurants. I had pictures and maps to show the geographical location of everything we planned to do.

Yet after all the work and planning, I couldn’t get Jack to leave his yellow house.

I had thought it a brilliant plan. I was going to take my daughter and son to Boston overnight last year and then a quick drive up to New Hampshire for my daughter to look at a college and then drive home.

The thing is Jack is on the autism spectrum and has an anxiety disorder. Life is not always easy for Jack. Going new places can cause anxiety.

He has many anxiety triggers. Certain foods, stores (especially if they are crowded) and if there is a stranger in the same aisle as us, going anywhere new, going places we know, certain coats, not being able to sleep, going to the movies, making decisions, leaving the house, and going to school.

In my day dream the three of us would wake up Thursday morning and pack our bags. The beauty of driving is we could bring a lot. If Jack wanted to bring his weighted blanket, stuff animals, pillow, iPad, iPhone, headphones, books, Legos, thinking putty, fidget toys, we could bring it all. We would load up the car. Jack in the backseat with his headphones on, my daughter sitting shotgun helping with navigation. The rest of the family at work and we would be off on an adventure!

I imagined a sunny day and us walking from the hotel to the aquarium. We would be looking at the fish, seals and turtles. We’d be smiling, holding hands and laughing down the street as we went to Quincy Market. We would enjoy a nice dinner and shopping and go back to the hotel and take a swim in the hotel pool.

On Wednesday, the “I’m not sure if I want to go to Boston” statements started. He worried about what to bring and what he couldn’t (the PC and the toaster). He didn’t want to leave his yellow house. Out came the Social Story again, the websites, the lists, the pictures. The reassuring that it would be fun! Nonetheless we still had the refusing to go. The other members of my family telling me it was probably best to just not go. In the end, I knew they were right, and I cancelled the trip.

That is when I started to feel sorry for myself. I had just wanted for a day and a night, to have fun, to have smiles, to hear laughter surrounded by hugs.

When I woke up the next morning and Boston wasn’t happening, I had a pity party for myself. I had done all the right things. Damn it I wanted rainbows and unicorns! No, I just wanted to spend a day and a night away with two of my children.

After a few hours of acting immature and feeling like a crappy mom, I got what I really wanted. Not the trip to Boston, but I had smiles on two of my children’s faces. The smiles came from making sugar cookies together. The cookies took little planning (preheat oven), no packing, just unpacking the bag of cookie cutters, no Social Story on my cool app. No looking at a map, just following a recipe. No getting in the car, just walking to the kitchen.

So maybe Jack had it right the entire time. We didn’t need Boston and the hotel to have smiles… they were here in the yellow house all along.

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Photo by Sean Pavone

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Why I Didn't Need a Crystal Ball as My Son With Autism Built His Future

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Don’t you sometimes wish you had the crystal ball, an assurance that the future will be OK?

I know I sure did. When my son Alex was diagnosed with autism at age 2, I wanted to know that when he was an adult, everything would be OK. I thought I’d be able to get through whatever was necessary if I could peek at the ending.

But the truth is, I was better off not knowing. I could not have appreciated the outcome if I hadn’t been on the journey.

Alex is an adult now, and I think his life is pretty awesome. But to put it bluntly, it’s not the kind of awesome I would have imagined when he was 2 or 4 or 6. He hasn’t yet found fluent language, and he didn’t go to college, and he doesn’t live on his own. He is on the autism spectrum, and that comes with challenges that can make his life hard. He requires around-the-clock supervision. He has complex communication needs.

Alex has a part time job, friends, family, and lives away from his family home. It seems everywhere he goes in our community, he runs into people he knows. I measure success as doing your best, overcoming obstacles, having strength of character, and building your own life. Alex is successful.

I’ve read articles from so many parents dreading to say they put their child in a group home. I look at it differently. I want my child to fulfill his potential and become as independent as possible. His neurotypical sister moved out, so why shouldn’t he?

Alex’s path to independence isn’t the same as his sister’s, and may not be the same as many of his peers, but it is a path nonetheless.

We worked really hard to find a good fit for Alex when it was time to move out. It took a lot of time and effort. He lives with three other roommates, all young men with different needs. They have around-the-clock staff. They eat meals together, do chores to take care of their home, and are involved in their community. They all have part-time jobs. They act like brothers and have created their own family. Alex has become more independent and had experiences he might not have had if he stayed home with us.

He has created bonds and relationships that he might not have had. Alex transitions smoothly between Mom and Dad’s house and his own house. We visit frequently, and he has overnight visits regularly. We thought going back and forth would be hard for him, but he does really well.

He had, and our whole family had, an additional support system when he was diagnosed with cancer 20 months ago. They helped us all through so much of the cancer treatment, and helped Alex retain as much normalcy in his life as possible. He is currently in remission, but it’s been a really long haul, and he’s not out of the woods yet. His caregivers and his group home were not only emotional and psychological support, they were practical and physical support in caring for him throughout his illness.

When Alex was 2, I didn’t know a family like ours. I didn’t know someone like Alex. If I had, I might have been less scared. I’m here to tell you that this outcome is OK — actually, it’s much more than OK. It may not look like the life I imagined when he was 2, but he has a rich life. And I’m really thankful I didn’t have that crystal ball.

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How We've Made Our Marriage Work as Special Needs Parents

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I saw a birthday card the other day that read “Growing old ain’t for cowards.” I think the same goes for marriage  – probably any marriage – but especially when parenting a child with special needs. Our daughter, 15, has an autism spectrum disorder, and she has three younger brothers who cause mayhem. While we are fortunate to share a deep faith and commitment to each other and to be surrounded by a supportive circle of family and friends, given the statistics on marriage in general, some days it’s a wonder we are still together.

When Erin turned 13, I wanted to hit the pause button. Seeing her growing up so fast while still dealing with the challenges of her disability made me long to stop the clock. As my marriage approaches its 18th year, (“almost an adult,” a friend noted) a part of me feels the same. We’ve made it through our fair share of “for better or worse” – who wants to “grow up” and see what “sickness and health” lays ahead. Let’s just stay here.

Looking back on those two people exchanging vows on a late September afternoon nearly two decades ago, I see how naïve they were. Let’s face it – as all seasoned couples know, when you’re standing before your friends and family making promises, you really have no idea what you are saying. Who the hell can know what “for better or worse” means when your greatest concern at the moment is making it back down the aisle without tripping? They are just words, and you have to say them to make it official and get on with the party.  That’s not to say you don’t mean them, but you simply cannot know how to love someone in good times and in bad until you are actually muddling through the s***storm with them.

Three months after our wedding, those words manifested in a move to a foreign city in the middle of a very dark winter. Shortly after, a miscarriage morphed into months and then two years of trying to
have a baby.  We thought maybe it wasn’t meant to be – it’s fine, we’re OK – and then the “for better” appeared – a baby, a girl, a little on the “colicky”/doesn’t sleep side but a beautiful baby nonetheless. Then, wow, a second – that was fast. How did that happen?  Life is good – two kids, a girl and a boy – fancy that. Who would have thought? Then a diagnosis – developmental delays, cognitive and motor impairments, sensory issues. Turns out that wasn’t colic.

You wonder how you’re handling it, and then you realize the hardest thing you’ve ever faced is also happening to someone else — the person you married. Someone with an exceptionally kind and patient heart, but who is different from you in many ways. You have to figure out how to carry this thing together without dropping it or breaking it or shattering yourselves in the process. Sometimes you hand it off to each other. Often I am the one diving in – reading the books, meeting the specialists – and it’s easy to feel like I’m carrying it alone. It can be easy to go down that rabbit hole and convince yourself that’s the case.

When I need him to be there, though, he shows up. He cancels meetings and rearranges travel when I can’t see one more doctor or therapist alone. When I need someone to witness the raised eyebrows,
the somber, apologetic, or brusque tones, he is there. Even then, though, I don’t always let him off the hook – largely because I am profoundly sad (and exhausted) and it feels the only thing I can do with this weight is to hand it off to him in the form of anger – anger at him for not being around enough, for having to take off so soon when he does show up.

In those early days, a good deal of irrationality entered the picture as we processed the fact that things had turned out so very differently than planned – not that we had planned anything at all. We just thought we’d get married, have a kid or two or three and deal with the usual stuff: bruises, breaks, scrapes, stitches. You know other possibilities are out there, but they don’t enter the picture when you’re standing on that altar or holding your newborn. You feel you and your husband are so incredibly capable of making this work – of protecting them – that nothing is going to touch them, or at least nothing you won’t be able to fix with a glass of water, a Band-Aid, or maybe a quick trip to the ER. Then we’ll be on to the “for better” again before we know it.

It doesn’t work like that. We all know this. We were not new to the world when we made those vows. But maybe that’s the beauty of a couple speaking those words in a suspension of disbelief, a willingness to put on hold what you know to be true, which Wikipedia notes, is “essential for a magic act or a circus sideshow act to succeed.” Sometimes our marriage and our family feels very much like a circus act, and more than a little magic – and sense of humor — is involved in getting us through our days.

Shortly after Erin’s diagnosis, Bill took to checking in daily with the question: “So what’s the crisis of the day?” I never fail to deliver. Often it’s small – the boys have pinkeye or we can’t find the pink tie-dye shirt and our daughter refuses to get dressed without it. But sometimes it’s something more, like the other day when she put her fist through a window pane in a post-seizure haze.

A few months after we moved back to the States and were staying with my parents, Bill called several times without an answer. When he arrived home to flames shooting out the kitchen window and six fire engines lined up in front, he saw why. I was relieved to see him and to share the day’s catastrophe, and he was happy to find us standing on the sidewalk, safe.

Maybe that’s what makes a special needs marriage, or any marriage, work. Understanding and accepting that sometimes it just doesn’t. Adapting to a constant redefinition of terms, of words, of good days, and what constitutes a crisis for better and for worse. Realizing that though you said you’d love this person no matter what, some days there’s no love left in the tank, and that’s OK. Regardless of what the “experts” say, sometimes there just aren’t enough hours in the day not to go to bed angry and unresolved. As long as you understand that what you’ve committed to is a process, a work in progress and that this work in progress takes a fair amount of work, understanding and faith, you might discover that even if the house burns down, you could not be more grateful to find this person standing beside you and your circus, safely on the side of the road.

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To the Police Officer Who Helped My Autistic Son

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I was sitting on the sidewalk when I suddenly realized you were standing over me. Well, not directly on the sidewalk: I was sitting on top of my kicking, screaming, 10-year-old son. I thank heaven you were the police officer who came to the scene.

We were in the heart of downtown Vancouver, at the beginning of rush hour. Business people were streaming past, staring at our little wrestling match. I’ve learned to ignore the stares because they keep me from doing my job: keeping my autistic son safe when he’s melting down.

On Wednesday, a meltdown began after my refusal to let him watch YouTube on the way home from school. After-school YouTube time has become an important part of his transition back to school: after two years of homeschooling, he’s back in school full time, and the prospect of end-of-day YouTube helps him push through the days when his anxiety makes it hard to go to class. But on this particular day, he’d refused to go to class at all, even when I reminded him that would mean a YouTube-free afternoon.

He regretted that decision as soon as the school day ended. Just as he was getting in the car, he asked to watch YouTube on my phone, and as soon as I refused, he screamed and jumped out of the car. I chased him through the parking garage, catching up to him just as he reached the elevator. Tears streaming down his face, he begged for his YouTube time. When I pulled him out of the elevator and back into the garage, he lay down in the middle of the car lane.

I stood over him, so we’d be visible to any drivers, until he was ready to get to his feet. He seemed calmer, so when he walked back to the elevator, I guessed he was heading to his dad’s office just across the street. I followed him into the elevator, up to the office lobby, and out onto the sidewalk. It wasn’t until he was almost at the curb that I realized he was trying to run into the street. I reached him just in time. He tried to tug away, back towards the street, so I pulled him down onto the sidewalk, where I could hold onto him while calling my husband for backup.

Thankfully, these moments of existential despair don’t come around often — maybe only every month or two. When they do, it takes all my emotional strength to hold fast to whatever limit-setting has played a part in my son’s meltdown. I know if I relent in the face of his threat to hurt himself, it could become an instinctive threat, and even more dangerous, a habitual thought pattern.

As our son has grown bigger, these situations have also taken a lot of physical strength. He’s now too big and strong for me to restrain with just my arms, so if he’s threatening to hurt himself, I have to pin him down. More and more often, I have wondered whether I will have to call the police to help. But I’ve been terrified to do so because I’m worried about scaring him  —  or getting into a conflict with law enforcement.

When I looked up to see a uniformed officer standing over me, I briefly thought those fears were coming true. But the police uniform and buzz cut framed the face of a kind, concerned woman.

“Is everything OK?” you asked, in a voice that was miraculously free of judgment.

“My son is autistic,” I explained. “He just tried to run into the street.”

“How can we help?” you asked.

“I just need to keep him safe until his dad gets here.”

You knelt down and spoke to him in a quiet, calm voice. You offered him a sticker, and you didn’t blink when his response was, “leave me alone!” You just kept speaking to him quietly while your partner, also a woman, stood watch over the three of us. Your police car was stopped in the middle of the road, lights flashing, but neither of you were trying to rush us to a resolution.

“He’s upset because I won’t let him have YouTube, but I can’t give in,” I explained, and you nodded in a way that told me you got it and that what I was saying made perfect sense. I was smiling despite the chaos  —  because if I didn’t see the humor of a wrestling match on a rush hour street, how would I survive? —  but from the way you looked at me, I knew you were seeing a mom who took the situation seriously.

When my husband answered the phone you gently took over the job of restraining my son… something no public servant has ever dared to do. We’ve had teachers and support workers tell us they’re not allowed to touch a child, even when it’s a matter of keeping our son safe. But you held him firmly and respectfully, as gently as you could, without a trace of anger or fear on your face.

“I have a lot of experience with autistic kids,” you told me, and it showed.

When my husband arrived he took over the job of helping me restrain our little guy, who was still kicking and screaming.

“Is there anything else we can do to help?” you asked.

The only thing I wanted was your business card so I could send you an email. If I do have to call the cops in the future, I would love your notes and name on our file. But it took another 45 minutes before our son was calm enough to get in the car and go home, and by the time we got there, I had lost your card.

I know how lucky I was to get that kind of police response: as a white, middle-aged, middle-class woman, I got the benefit of many possible doubts about why I was holding my kid down on the sidewalk. I also felt incredibly grateful for our recent autism diagnosis, which makes the situation much easier to explain.

But what made me feel really lucky was encountering you, a police officer who approached our family with concern and calm. You were kindness, and for my son, you were safety.

And sometimes safety is the one thing I fear I can’t provide my growing boy. It was great to know that in that particular moment, somebody had my back. It’s what every parent of a child  with special needs —  every parent, period  —  should be able to count on.

Update: The Vancouver Police Department helped me find our helpful officers! A huge thank you to Constables Karma and Jackie.

This post originally appeared on Medium.

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Image by British Columbia Emergency Photography

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'How Autistic Are You?' Don't Ask Me That!

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You are asking the wrong question.

I hate talking face-to-face about my autism to people who do not know me. I get comments like, “Well you must be one of those ‘higher-functioning autistics’ – since you have a house and a good job. Your life looks great. There is nothing wrong with you.”

In general I am a pretty happy and positive person. I’ve worked hard to learn to love myself as I am and have made efforts to eliminate all negativity and bad people from my life. I smile all the time, even if I am not feeling well or having a bad day.

Technically my smile is more of a grin or smirk – no teeth. If I force teeth it’s like that scene from the movie “The Terminator” where Arnold Schwarzenegger tried to learn how to smile. I wish I was exaggerating. I can smile with teeth if I am genuinely happy about something, but this is one thing I cannot fake.

What they don’t see are my struggles. They don’t know that sometimes I am panicking on the inside or going through sensory overload right in front of them. How could they?

Growing up undiagnosed, I learned to hide these things. Nobody sees me freaking out, knows when I am having stomach issues or if my head is pounding from the florescent lighting of the office I work in two to three days a week.

I don’t complain. I smile, push forward, pull up my big girl panties and do what I have to do to make sure I am able to provide the best possible life for myself. I have a good job because I work hard.

My mother allowed me to start working at the age of 12. I started out with jobs like cleaning. She told me to always stay busy, find something to do. If I am on the clock I need to find work to do. So I did.

I put my heart and soul into everything I do — that is why I have a nice home and a good job — not because I am a “high-functioning” autistic. Honestly, I am not a fan of these high and low-functioning labels.

People say I am high-functioning because I have well-developed coping mechanisms, which basically means I keep all my struggling hidden to myself to make neurotypical people feel comfortable. Because I can pass for “normal,” blend in and be one of “them,” I must be high-functioning. How offensive!

Please do not ask autistic people (or their parents) how autistic they (or their child) are (is).

This would be the number one question on my list of things not to say to or ask an autistic person.

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