Why Some Kids On The Autism Spectrum Have Meltdowns After School

Tonight I helped a local group with some autism awareness training. I think it went well. I used the coke can explanation to describe a day at school for Sam. Sam is fictional, he is a 10-year-old little boy, he has red curly hair and a cheeky smile. He is a combination of my own school experiences and those of my children.

The coke can analogy was first described to me by another parent of a child on the autism spectrum a few years ago; it has always stuck with me as the perfect way to explain the way a child bottles up everything and then let’s it all go once getting out of school.

I have seen other people write about it, and this is my interpretation as an autistic adult myself and a parent of kids on the autism spectrum:

The coke can example.

“Come on Sam, time to get up.”

The light streaming in the curtains burns Sams eyes, blinding him.

Sam gets up. Immediately the pressures of everyday life are upon him: get washed and dressed, brush teeth, go downstairs, join the rest of the family.

“Morning, Sam.”

Clothes are scratchy and uncomfortable; they are not comfy clothes Sam would choose. They seem to dig in, or don’t sit right, labels rub and feel different to the rest of clothing, they become an annoying distraction for Sam. Sam tries to eat breakfast but all he can think of is those seams and labels.

Now shake the can!

Sam now needs to find and put on his shoes and coat. Shoes are heavy, they squeeze and pinch, feeling tight over Sam’s feet.

Coats are restrictive, bulky and annoying!

Now Sam needs to leave the house.

Shake the can!

Sam gets in the car. The car is cold, the seats are hard, the car has a funny smell. The seatbelt digs in and restricts movement, it feels suffocating.

Sam arrives at school, he gets out the car, there are other cars, children and their parents everywhere.

Shake, shake, shake the can some more!

So much to see, where should Sam look?

So much noise, did someone say Sam?

Where is that noise coming from?

Sam trips and falls on the steps.

Sam gets up, he feels like running away!

Shake the can some more!

The noise is the ringing bell, Sam covers his ears and drops to the ground slamming his head off the ground! I help Sam up, I hug Sam “It’s OK, you are OK.” Sam is now late for school.

Shake the can!

Sam enters his classroom last, 25 noisy children each with their own unique faces, sounds and smells. Sam’s senses are totally overwhelmed, he covers his ears, shuts his eyes and slams his head off the nearest desk.

A voice is shouting, “Sam, Sam, sit down Sam. Come on now everyone, into your seats. Sam sit down.” All Sam hears is his name. He focuses hard but misses the instructions, he sees the other children sitting down and copies.

Shake the can harder!

Chairs are dragging on the floor, like fingernails down a blackboard, the lights are too bright, the classroom is covered in posters and art work made by children, pencils on paper make a noise only Sam can hear, it is a busy environment full of distractions. All Sam’s senses are overwhelmed. Sam’s eyes and head hurt. Sam wants to run away.

Sam again hits his head off the desk.

Shake the can again!

Sam tries to do his work. Sam doesn’t understand what he is meant to be doing, he couldn’t process all the instructions quickly enough. Sam can’t ask for help, he can’t communicate his difficulties although Sam is verbal, it is to overwhelming to speak in class.

Sam rolls his pencil along the table, mesmerized by the way the light dances along it’s straight edges. Watching the light dance is soothing for Sam, he gets up and walks around, walking is soothing, too. Sam gets told off for distracting the other children, he is told to return to his seat.

Shake, shake, shake!

Break time! Sam is alone, the other children won’t include him. Over 100 children in the playground but Sam feels so lonely, he longs for company. Again Sam is hit with sensory overload caused by the noisy playground environment, Sam covers his ears, falls to the ground and hammers his head off the ground.

“Go play, Sam”

“Play? How do I play? What with? There are no toys” are the thoughts racing through Sam’s mind.

Sam doesn’t know how to play, he struggles with imagination. Play with who? Sam has no friends.

Sam runs up and down, knocking into other children, “ Go away, Sam!” “You are in the way Sam.”

The smell and noise in the dining room at lunchtime causes Sam to retch, he then falls to the ground, hands on ears, eyes screwed tightly shut, slamming his head off the floor, his senses overwhelmed again. Sam barely eats any lunch.

Shake, shake, shake harder.

“Do your worksheet, Sam!”

Gym time. Sam is last to change, it is hard for Sam to change clothes, he is all fingers and thumbs, his P.E. clothes feel different, different materials. More labels. Light shoes that feel wrong.

At P.E., no one wants Sam on their team, Sam can’t hit the ball with the bat, he gets struck out, he sits alone at the side punching his chin.

Sam changes back into his school clothes, again everything feels wrong.

Shake harder, shake harder!

“Come on Sam, everyone else has finished that worksheet!” Sam flaps his arms and stamps his feet. Sam is struggling to “hide” his autism.

Sam wants to run away, he feels sweaty, his heart is thundering in his chest, the classroom is too hot, too loud, too bright, just all too much! Sam sits repeatedly banging his head off his desk.

Sam doesn’t understand. Sam needs to move, to fidget. Sam chews his fingers, the bones in his fingers are deformed from repetitive chewing.

Shake, shake, shake!

Assembly, “Sit down, Sam!”

Sam just can’t sit still, Sam just can’t keep quiet. Too many people, everywhere, it is all too much!

Smash, smash, smash! Sam is smashing his head off the tiled floor.

Sam starts making noises, squealing, howling, feet stamping, arms flapping.

Children whisper.

Teachers talking.

It is all too much, more head smashing.

Sam is crying.

“Sam back to the classroom.” Sam stands up, he doesn’t understand why he has to leave and is guided back to the classroom. Everyone is staring, pointing, whispering, “weirdo, freak, cry baby.”

Sam understands every single insult, the tears fall faster.

Keep shaking that can!

“Sam get your coat and bag.”

Sam can’t find his coat, and what else was he to find….

Sam gets knocked into, pushed out of the way.

Sam returns with his coat, “Sam, where is your bag?”

Sam goes back into the cloakroom, more pushing and shoving to find his bag. Sam’s bag is not on its peg, someone has moved it. Sam is panicking, finally he finds his bag hidden out of sight over by the door.

Shake, shake shake!

Home time!

Sam negotiates his way along a packed corridor full of a sea of moving children. He fights his way through the door outside into the playground to be met by the faces of hundreds of parents waiting to collect their children.

Sam spots me.

“How was your day, Sam?”

Would you like to open that can now?

The coke can effect describes the child who bottled everything up for as long as they could.

This was my own experience of school and the experience of two of my children.

Sometimes, I didn’t last until the end of the day. I had a reputation for throwing classroom furniture out of the way while I made my escape. One of my children who doesn’t know of my behavior in school reacts in exactly the same way.

It is a fight-or-flight reaction — I just had to get out and anything in my path would be met with destruction.

For a child like Sam, you need to find a way to release the fizz slowly.

At school pick up, I minimize communication with the children, welcoming them with a smile, a hug and a high five.

Remember how hard Sam’s day was?

My child like Sam bounces on a trampoline for up to an hour most days. My other child goes for a run. They have to get it out their system, just like I did. These days, I use loud music and long walks when the need to let off steam arises.

If the coke can explodes before you can gently release the pressure, you have to let the tears run their course. It may be a few minutes, it may take hours. The priority is keeping this child safe until the storm passes. Talking won’t work, they can’t hear you during a meltdown. Touching can be risky and lead to more lashing out. All you can do is wait it out, be patient, be understanding.

Once the child is calming down, use gentle reassurance, short sentences.

Never punish a meltdown. The child has no control.

Now move on, be positive and kind. The last thing any child wants is for you to drag up all the triggers and trauma that added up over the day. School is done for the day, leave it there.

Sam and others like him will have to summon up the strength to do it all again tomorrow.

Originally published on The Mighty.

The post Why Some Kids On The Autism Spectrum Have Meltdowns After School appeared first on Scary Mommy.

When Your Kid Is The Only One Not Getting An Award

Last Friday was my son’s sixth grade graduation. The school played a beautiful video comparing the kids’ baby pictures to their sixth-grade yearbook photos, a cruel move that had parents wiping tears and biting back ugly cries. After passing out diplomas, the principal said it was time to hand out the Presidential Awards, an academic achievement award that recognizes students who have maintained a GPA above 3.5 for every semester from third grade to sixth grade.

About a third of the graduating students were called back up to the stage to accept an award. Everyone clapped, and I thought it was over, but then I realized we had only completed the first round of awards. That first group was the kids who had maintained a GPA of 3.5 to 3.74. There were still two other categories yet to be called: 3.75 to 3.99, and then a separate distinct category for perfect 4.0s.

For context, the elementary school my kids attend is known as a choice school. It’s a public school, but it has a focus on STEM (science, technology, engineering and math) and has a rigorous curriculum and various other requirements to attend, like that parents have to volunteer 20 hours every school year. The school receives so many applications annually that they have to select attendees via lottery, and the students, as a rule, tend to be overachievers.

That meant that almost every child in the sixth grade was called onstage to receive a Presidential Award. It was a beautiful thing to see, honestly. A couple of times, when a student’s name was called, a parent would whistle or shout from the audience, “That’s my boy!” It was so sweet to hear the parents’ pride for their kids. The overall mood was jovial. It was hard, though, not to feel a little hurt on my son’s behalf that he was one of the only ones — maybe the only one – not called to receive one of those awards.

My son has loved attending this amazing school, but it’s been tough for him. In the second grade, he was diagnosed with ADHD. We’d struggled since preschool with trying to help him acclimate to a school environment, so the diagnosis didn’t come as a surprise. But it wasn’t until the middle of third grade that we began medicating our son for his ADHD. Even after beginning medication, we had some rough semesters, grade-wise. There were so many teacher conferences, so many tears at night over homework, so many assignments finished but not turned in. So many zeros.

We eventually got Lucas’s medication straightened out, and he’s doing much better in school. In fact, this last semester he got straight A’s for the first time. I’m proud, of course, because he worked his butt off, but that’s not the point I want to make. Even if he’d made C’s, he still worked his butt off.

My point is, kids who work really hard to make C’s don’t get awards. Although I don’t begrudge celebrating a child’s success, I think we are doing a disservice to kids who are affected by disorders that impact their academic performance. We are inadvertently shaming kids who are dealing with ADHD or anxiety or autism or other issues that make school exponentially harder.

When my son came up to me after the ceremony, tears in his eyes because he was sad to be leaving the school, he said, “Mom, I think I was the only one that didn’t get a Presidential Award.”

He noticed. Of course, he noticed. He knows he’s overcome so much and worked so hard to pull his grades up, so, yeah, it was a punch to the gut for him to get left out. My son will be okay though – once his official report card comes in, we’ll celebrate his efforts in a big way.

But what about other kids who have experienced similar, awards ceremony after awards ceremony, year after year after year? If you’re a parent of one of these kids, you know how hard they work. You know how hard you work. You know that persistence and dedication does not always correlate to measurable achievement. You know that often, your child has to work twice as hard as some of the straight-A students just to earn a C.

And you know that often, no one notices.

I’m not here to detract from the straight-A students’ accomplishments or say they are undeserving. These kids absolutely deserve recognition for their hard work. What I am here to say is this:

To the parent of the kid who is trying really hard but not quite measuring up, I see you. I see your kid. I see your struggle. I see how hard you’re working. I see you helicoptering over your child even though that is something you promised yourself you would never do, but you have no choice but to hover because your kid would utterly, abysmally fail if you didn’t. You are trying so hard, and so is your child, and I see you.

Your kid might not get a fancy certificate with a signature stamp from the president of United States, but you sure as hell have my respect and admiration. And so does your kid.

To The ‘Weird’ Girls Who Don’t Quite Fit In

I’ve been thinking a lot this month — about my past, my present, and specifically about my late diagnosis of autism at the age of 34. Looking back, I realized I first started considering the possibility that I could be on the autism spectrum after reading the stories of other women and girls with autism. Since their stories helped me learn more about myself, I’ve been inspired to share my own experiences, in the hope my story might help someone else who has been struggling. So here is my open letter to all the “weird” girls who might have undiagnosed autism.

Dear “weird” girl,

I was once like you.

I didn’t talk much as a kid. Didn’t care to make more than one friend. I was perfectly content playing on my own or just reading. I liked to play with my toys in my own way — I’d arrange them in perfect little rows, or assemble them into static scenes. Sometimes I would be so focused on my reading or toys, I wouldn’t hear my mother repeatedly calling for me. My parents had my hearing checked when I was young. I passed with flying colors, but I still didn’t consistently respond to the sound of my own name.

I was also clumsy and uncoordinated. I burned myself while cooking on a regular basis. I banged my elbows into corners and clipped my toes on the edges of furniture. The clumsiness persisted, even after getting glasses and having my ears checked.

I didn’t “get” other people a lot of the time. Jokes that sent others into stitches of laughter flew right over my head. Practical jokes were the worst. I never felt as clueless as I did when I was the butt of a joke I didn’t understand. I learned to fake it, how to play along until the moment passed. I faked my way through a lot of social interactions and conversations.

As I got older, I lost myself in movies and music, or that magical combination of both: musicals. I would watch Disney movies over and over, memorizing not only the lyrics to the songs, but the dialogue as well. Characters in musicals had clearly defined roles, and they sang explicitly about their feelings. I understood them in a way I could not understand the people around me. I still love Disney movies, cartoons, video games, collecting toys and stuffed animals, and other supposedly “childish” interests. They keep me calm, help me right myself when I’m feeling stressed out. They make sense in a world that often doesn’t make very much sense at all.

I had trouble transitioning from childhood to adulthood. Learning how to manage money on my own, how to take care of myself, how to be successful at a job — it all took more effort than I anticipated, given how easily I had sailed through elementary and secondary school. College was a lot harder, and it took me a few tries to get it right.

These days I struggle at work. It’s hard to talk to new people. I miss social cues. I laugh at inappropriate times, or when I’m nervous, or when I don’t understand something. I’m rude without intending to be. I don’t always pick up on people’s emotions, and when I do, I sometimes struggle to understand why they feel that way. Sometimes I need to be told not only what someone is feeling, but how they want me to respond, how to help them. I have trouble explaining myself and defending myself in conversation. I have trouble keeping my emotions in check.

It’s hard for me to follow conversations with more than one person. I struggle with knowing when it’s my turn to speak. I constantly interrupt others, or walk away without saying goodbye or properly ending the conversation. I find that scripted, predictable conversations work best. I am not a fan of eye contact. I sometimes need specific instructions in order to know how to perform new tasks. Without that guidance, I try to fake it and learn by copying others. I’d rather look things up on the internet than ask someone for help. I struggle with concentrating and organizing work tasks, but I love to catalog and research things relating to my own personal interests.

I like to follow a routine as much as possible. Deviating from it causes me anxiety. It took me a long time to realize how stressed I was by bright lights, loud noises, big crowds, itchy fabrics and foods with weird textures. It’s even worse when I’m sick or tired. When I’m upset, flapping my hands rapidly helps me calm down in a way that’s hard to explain to other people.

These sensory sensitivities, and a lot of other things about myself, don’t really make sense to the average person. People who aren’t that familiar with autism don’t know what to make of it. To them, I’m “weird.”

Maybe you’ve been feeling lately like you’re “weird,” too. Maybe the things people find odd about you don’t match up exactly with mine, but the end result is similar: feeling like you’re alone a lot of the time, like no one else understands what life is really like for you. If so, I want you to know it’s not your fault.

“Weird” girl, I was once like you — and I suppose I still am.

The parts of me that seem so “weird” to others are still there. They’ll always be part of me. But all those weird little traits and awkward moments in my life start to make a lot more sense when you look at them through the lens of autism and anxiety.

I spent three decades of my life wondering what was wrong with me, why I didn’t fit in, why I didn’t act the way other people do. I was so focused on what I was doing wrong that I didn’t notice all the things I was doing right. I constantly forgot that I was smart, that I could be a good problem-solver. That my brain made me think differently than most other people, and that difference could make me more creative. That I am a good writer. That I can be a great listener.

That I am, underneath all the “weird,” still a person. It took me a long time to get here, but I like who I am today.

So if you’re feeling down or stressed out, and you’re worried that your life is falling apart for no good reason, and you can’t figure out why you are so much more overwhelmed by the world around you than everyone else seems to be — don’t fret. Don’t be afraid to ask for help. Don’t be scared to speak to a professional about the difficulties you’ve been experiencing. Don’t be intimidated by the possibility that your brain might be wired a little differently than you expected. It may be autism. It may be anxiety. It may be depression, or bipolar disorder, or a host of other diagnoses. But none of these diagnoses mean that you’re not still you.

You are not wrong, or broken, or stupid. You don’t lack “common sense” or the ability to take care of yourself. You might need some extra supports, but you can learn to manage. You can be a successful adult. You can be a happy, fulfilled person. You can have a life worth living.

Don’t be afraid of finding answers.

Right now, you’re like a traveler arriving at a new destination. The customs might be confusing and unintuitive, the locals might look at you funny, and people may not always understand what you’re trying to say. But once you return home, everything just makes sense. For me, getting a diagnosis of autism was like coming home.

Dear “weird” girl, I hope you find your home someday soon. It’s out there, so don’t lose hope. Keep searching, and one day, you’ll find your people. Someone else who speaks your language, who understands why you do the odd little things you do. In finding them, you’ll find out more about yourself. Things will start to make sense.

It won’t fix everything. You’ll still struggle, and the world will continue to be a strange and stressful place, but understanding why you struggle may make it all more bearable. It can also help you to figure out what to do next, how to better deal with the overwhelming world around you.

You’ll still be that same “weird” girl. You’ll still be you. But you’ll also be something greater. Taking the time to learn more about yourself, and using that knowledge to take the necessary steps to better yourself is one of the best risks you can take in life. So be brave, little one, and let that be your new moniker.

Don’t settle for just being the “weird” girl. Be the brave one, too. An adventurer setting out on a new journey. Your home is out there. Let’s go find it.

Originally published on The Mighty

This Is What It’s Like To Have A Child Who Has High-Functioning Autism

April is Autism Awareness Month and the autism activist in me wants to smother the world in awareness. I follow autism blogs and read about families impacted by severe autism. These families are true inspiration. My side of the autism world is on the opposite end of the spectrum. The so-called “high functioning” autism. While I am beyond thankful for how very far my son has come, high-functioning autism certainly comes with its own challenges.

We are a party of 5.  My husband and I have 3 kids — Sadie (9), Bryce (6), and Lucy (2). Our oldest arrived in 2009 and is your typical firstborn. In the summer of 2011, South Jersey was hit with tornadoes, a derecho, and an earthquake all in the same week. The very same week our son Bryce was born. Coincidence?  I often wonder.

Things were different (not less) from the start. We did not feel like seasoned parents as all our past experience went out the window. Bryce was officially diagnosed with autism at the age of 20 months. This September, he will move to an inclusion classroom setting. We are ecstatic and terrified all in the same breath.

Bryce’s ADOS test placed him smack dab in the middle of the spectrum and I often feel like we are in the middle of both worlds. One side being the autism world, the other being the typical world. Feeling stuck in the middle is a lot lonelier than it looks.

From a distance, Bryce appears to be your typical kindergartener. A few short years ago that was anything but the case. At age two — no babble, no eye contact, no pointing. He was a pro at failing hearing tests. He failed them so often and so well it took a sedated hearing test to tell us his hearing was just fine.

At age three, he transitioned from early intervention to medical pre-school. I can’t talk about his teachers, aides, and therapists without crying. They will always be our superheroes. They helped Bryce tremendously. Words and progress don’t always come to kids on the spectrum. It will never be lost on me that we are LUCKY. But, lucky is not a word synonymous with high-functioning autism. After all, it is still autism. It’s not bad parenting; it’s not a spoiled child throwing temper tantrums. It’s autism.

Bryce looks typical so we get your typical shocked reactions during an excessive meltdown or when he can’t handle a dog barking or when he spins himself into a supermarket display. Warning: Mama bear does surface!

It’s not until Bryce is playing with a neurotypical 6-year-old that the differences become obvious. He likes playing with little Disney figures (what he calls his “guys”). It makes me happy because he seems happy. And for the longest time, he didn’t know how to play.

But most kids his age aren’t playing with Disney guys for hours on end. Last week, the neighborhood kids came by asking for my oldest to play. She declined. I knew Bryce was wishing they would ask him to play.  After all, he is a boy just about their age. They are good kids, and they did ask him to play nerf guns. He pleaded with his words and eyes. My heart said heck yeah, but my brain remembered a similar situation that happened just weeks before. I already knew the ending to this story.

“Let him go, push him a little,” says my husband. I let him go and secretly bribe my 9 year-old to join him (which happens all too often).  I tell him to grab his helmet so it won’t hurt if they aim at your head. I’m not quite sure what he thought, but he certainly was shocked to learn they’d be shooting at him. From there, this story goes south.

He didn’t play. He was sad. I was sad. The details aren’t important. So instead of sports with the neighborhood kids or recreational teams (losing isn’t his forte), we joined adapted soccer. The coaches and staff are amazing, but I feel stuck. Do I try recreational soccer again, knowing he can’t handle it, or do we stay and be the MVP of special needs soccer?

I don’t know the right answer, there probably isn’t one. I also know this isn’t a third-world problem, but this is high-functioning autism. And again, I’m stuck somewhere in the middle.

Susan Seabrook

Bryce tends to get made fun of for doing “baby things.” There was a time when I told my best friend to remind me of something very important when this happens. Remember the times I used to cry because he didn’t know kids were laughing at him. Take me back to those painful moments when I had to put on my sunglasses to hide my tears. I try and keep that in mind when Bryce gets made fun of.  I really do.  But, it’s hard.

He takes a while to process things sometimes. He feels, more than anyone I know. The good and the bad. It’s during those bad times when my older daughter seems to help him best.  She’ll make up a scenario about how someone made fun of her and how she dealt with it.  My little girl.  Nine years old, acting 19.  I watch, appreciate the amazing young lady she has become, cry more, and grab some sunglasses.

Bryce’s toddler years were stolen because of endless therapy and school, and Sadie missed her innocent adolescence because she is and will always be his person. When she grows up she will be the best speech therapist around! Heck, she’s been training for it her whole life. Damn you, autism!

My family is beyond appreciative for the autism community we’ve found. We have an amazing local support group that provides advice, activities, a sounding board, and most importantly, LOVE. When Bryce had meltdowns and no words – I felt relaxed at these special needs events.

Now sometimes I feel guilty. I wish others had the same story and luck we had. Because I’m no fool — at the end of the day — it’s luck. Being stuck in the middle can feel isolating.  There are absolutely worse cards to be dealt, but I’d like the world to know high-functioning autism is still no royal flush.

Susan Seabrook

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When My Nonverbal Son Asked For Mom And Dad

As Zachary gets older, his developmental delays become more noticeable between him and his peers. The fact that he has no words is the biggest one, which is also sometimes the saddest for us. We wonder if we will ever hear that little toddler voice of his and if he will sound just like Landon, our 2-year-old son. Every time I hear my name called from Landon, my heart melts and aches all at once. It is a bittersweet world that my family lives in. How can I really enjoy those moments when I’m still longing for that moment with Zachary?

Besides having autism, Zachary also has childhood apraxia of speech (CAS). I often find that people know less about apraxia than autism. Zachary finally desires to communicate with the world, but with CAS, he has a motor planning issue that prevents him from saying a word or sound consistently. It is a neurological disorder. The brain knows what it wants to say but can’t make the physical movements with mouth to make the correct word, or sound. There is basically a disconnect with the brain and the mouth.

As parents, we decided to start off with some sign language for Zachary. He knows two signs: “more” and “all done.” When he first learned those two signs, it was pretty life changing for all of us. Zachary doesn’t even know how to shake his head “yes” or “no.” It has always been a guessing game, and we can only hope we are guessing most of his needs and wants correctly. At least when he learned “more” and “all done,” we were given a glance into what he wanted and needed at the time.

Within recent months, Zachary has been using the sign “more” for “I want.” When he is eating a cookie and he signs for “more,” I know he wants more cookies. But when he points to the bathtub and signs “more,” I know he means “I want a bath.” Those are two different needs, so we knew we needed something more for him to express himself.

There are so many options out there, which is great, but overwhelming. As a parent, there is always some self-doubt when making decisions from the moment you conceive that child. What is your birth plan? Will you breast feed or formula feed? What bottle will you use? What school will your child attend? What after school activities will they do? It never stops, but as a special needs parent I feel like some of our decisions are life altering and time is always everything. What will happen if we wait too long? What will happen if we rush this? How long is this waitlist for? Time is a battle within itself.

This year, my husband and I, with much deliberation, chose to make our own communication book with Zachary’s teacher. I say much deliberation, because deep down there is a part of us that thought if we just wait a little bit longer maybe he will just talk. However, how much longer should Zachary not be able to have voice? It is not fair to prevent a better form of communication, because I’m still holding on to a prayer that seems to go unanswered.

We took real pictures of items that he uses every day, like his favorite cookie, specific brand of juices we use, his favorite toys, even pictures of our backyard, bathroom, and his bedroom. The book is filled with about 20 pages of tiny laminated pictures that are on Velcro on each page. When we first started this book he was only able to look at 6 pictures at a time. Just scanning a book, a picture, the television is a triumph in itself. Zachary is now able to flip through pages, and pick what he wants and brings me the picture.

He caught on so quickly that it makes me sad to think how long he just sat within his own mind, never being able to get his needs across. My husband and I, as do all parents, do the best we can. I would like to think that I guessed Zachary’s needs mostly right these past three years. However, now that he can pick what he wants to eat, what he wants to play with, and where he wants to go, I don’t think I would have picked half the things he gives me on daily basis.

Recently, during home therapy, while my husband and I were in the other room, Zachary was crying with his ABA therapist. It is five o’clock at night, and the sun is getting lower. Normally, during the week my husband wakes Zachary up before the sun is up. He is off to school for the day, which is filled with lots of other therapies and activities. He takes an hour long bus ride there and back, and comes home to a couple more hours of therapy. Somedays, like anyone else coming home from a full time job, Zachary just wants to rest. That is where we are today.

Today is also different than other days. Today Zachary has a communication book. He flipped through his book and came to the last page in there. It has pictures of me, my husband, his brother, and his aunt. He first pulled off my husband’s picture and then my picture and handed them to his therapist. Zachary had used his communication book to ask for his parents for the first time.

He is 3 years old. He could have asked for anything in this book: ice cream, or to play on his swing. Instead, he asked for mom and dad. He has the same needs and wants as any other child, and sometimes you just want mom or dad. Sometimes, as parents, we need to be validated as well. Although Zachary will reach out to us and come to us when he needs us, it is not the same when I know he is trying to communicate like you and I do everyday. So in this moment, my family will bask in this bittersweet world for a little bit longer today.

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What It’s Like To Live With Anxiety When Your Child Has Chronic Conditions

When your child first gets diagnosed with a life-altering condition, the world kind of spins out of control for a bit, especially when they’ve always been otherwise healthy. When you get two life-altering diagnoses in six months, you stop for a second or two and wonder what on earth is going on.

When you’re dealt these blows and you already live with anxiety and depression, you may wonder to yourself how you’re going to come out on the other side of this, how you’re going to find a way to function, how will you teach your child not to be a victim when you totally feel like one, and how you will do the least possible damage to the affected child and their sibling.

Welcome to my life. This is what 2016 was for me – a year of sickness, both physical and mental.

In April and May of that year, my younger son began experiencing bouts of sleep apnea – something we are well-versed in, as my husband has been sleeping with a c-pap for over a decade now. I was living in a constant sleep-deprived state, because I only dozed so that I would hear O and reposition him as necessary. I was also in grad school at night, doing research and reading and writing during the day while I also had a 4-year-old and 3-year-old running around the house.

In other words, it was a mayhem around here.

In the midst of this, my husband started seeing symptoms of type 1 diabetes in my older son. I found excuses for every symptom, not wanting to believe what my eyes were also seeing, because I could not remotely face that reality. He’s drinking more? It must be because he had a growth spurt and could finally reach the sink by himself, so he’s asserting his independence.

He’s wetting the bed all of a sudden? Every single night? It must be anxiety because I was so anxious over O’s condition. He’s eating like a bottomless pit? Well, look at how much energy he’s expending every day. (I also didn’t realize yet that his hundreds of laps around the floor plan of the house was abnormal, but thanks ADHD.)

The first week of June, just days after his third birthday, O had surgery to remove his tonsils and adenoids. I was a wreck, with fears of his throat bleeding, of the boys roughhousing and O having complications. Anxiety doesn’t care about what’s real, what’s actually going on. Anxiety preys on your irrational fears–and I was afraid of everything. The only good thing was that post-surgery, O’s sleep apnea disappeared almost immediately. His healing process was speedy and uneventful, too, thank the heavens. But…

Eleven days after O’s surgery, we had an incident with D at bedtime, where he’d asked for his 3,000th drink of the night, and I completely lost it, yelling at him to go to sleep. And then my son broke my heart and started sobbing. “Why Mommy? Why can’t I have a drink? I need a drink. What did I do wrong? Why can’t I have water? Mommy? I need water, Mommy.”

I will spare you the rest of it, but the following day was Saturday and we took an unannounced trip to the pediatrician, who saw us, looked at D, and after he’d tested D’s urine for ketones, turned the color of ash. Our life as we knew it was completely changed in a single moment – but that’s how it always changes, right? I can visualize it as if it were this morning.

Those first few months were an anxiety-fest. I was scared, terrified really. How could I have ignored the symptoms for so long? I knew better! What if he went low in his sleep? People die like this. How would I ever sleep again? How would we afford all this? How would I send him to school in September? Nobody could take care of him as well as I would! Was it going to happen to O also?

I’m talking severe sleep deprivation from waking every 2-3 hours to check on him. Not eating properly. Worrying about everything there was to worry about. Still taking classes, accepting an internship, and trying to keep cool on the outside so that nobody really knew just how much of a mess I was, because “fake it ’til ya make it,” amiright? Act like I’ve got it under control and eventually I might? If you laugh (however awkwardly) at everything, it might all turn out okay… or something like that.

Along comes October, and D gets an unofficial Asperger’s diagnosis, leading eventually to an autism diagnosis, with ADHD, sensory issues, and more. So, my beautiful perfect boy with type 1 diabetes is also autistic? What?

Rational me said, “Wow, this makes so much sense,” and “How do we know what help he will need?”

Anxious me beat myself up, again, for delaying a diagnosis, and wondering how we missed it, and asking so many “what if” questions.

All of this chaos resulted in my having a prolonged physical breakdown. It was awful for all of us. I had two severe allergic reactions in two months’ time. I’m talking head-to-toe rash, chills, exhaustion, inability to eat or focus… and the end result was that I found my way back into a therapist’s office, and she saved my life and my family and my relationships. With her help, I gained perspective, got medicated, and was able to pull myself together. She helped me find my self-worth, find faith in my abilities as a wife and mother, and rediscover my sense of humor, which makes all of our lives so much less stressful.

Is the fear still there? Well, yes. I’m not going to lie. But I don’t let it limit us, which is what’s important.

D is positively thriving despite having so many challenges. He’s the happiest kid who tells the worst jokes and, though he doesn’t like having diabetes, at 6 and a half, he is beginning to assert himself in terms of managing the diabetes. I wouldn’t trust him to be independent with it, at least not now, but we think – we hope – he will be able to care for himself independently in the future. That’s big.

O, on the other hand, is a super-star little brother, and we walk a fine line of teaching him about D’s issues without giving him responsibility over them. And there is no joke O won’t make; he will stand on his head on a scooter if he thinks it will get someone to laugh, and this causes me more anxiety. Laugh or cry, laugh or cry, right?

I live with my anxiety, and (mostly) function fairly well. We’re not victims, and we’re not raising victims. We work hard to ensure that, and to advocate for others in our shoes. In the meantime, we embrace the madness and laugh our way through it all as much as possible. Luckily for us, they are seriously funny little dudes. Lots of coffee, meds, and laughter – that’s what gets this mama through.

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What It's Like To Live With Anxiety When Your Child Has Chronic Conditions

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My Child Has Autism, But I’m Scared To Tell You

My three-year-old daughter has autism. But, I’m scared to tell you that. You see, she has worked so hard to overcome her challenges and, I’m worried that, if you find out that she has autism, you will make things even harder for her.

She does not display the stereotypical characteristics of autism, so if I don’t tell you that she has autism, maybe you won’t know it. You might notice her speech is choppy and difficult to understand, but no one judges a child for a speech delay.

You see, I have learned my lesson in the past. Like the time I called ten different preschools whose available spots conveniently disappeared after I mentioned autism (even though I explained that my daughter did not require any accommodations and has no behavioral challenges). If educators, who are supposed to be both knowledgeable about and accepting of children, judge a three-year-old child based on a label, how will you judge her? Maybe, if I don’t tell you she has autism, you’ll treat her the same as you would any other child?

I do want to tell you that my daughter has autism though. I want to tell you because we moved here two years ago but have spent so much time juggling therapies that we haven’t had the time or energy to make friends. I want to tell you that the reason we can’t meet up is because she has therapy all the time. And, I want to tell you in order to change your misconception of autism. So, here it goes:

My three-year-old daughter has autism. She is also the best behaved child in her preschool class (thank you to the one school who welcomed her) and is super smart, sweet, and kind.  She is a three-year-old who likes to play with other children, is social, and likes to share. She also loves to clean up. She is the smiley-est child that I know and does not have tantrums.

She also happens to be a three-year-old who got so overwhelmed at the Easter egg hunt that she wanted to be held rather than collect eggs. She is a three-year-old who gets so distressed by unanticipated schedule changes that she gets diarrhea and cannot sleep. She is a three-year-old who must have lunch before noon, must have a nap exactly at 1:30pm, and must have dinner before 5:30pm.  She is a three-year-old who also has a rare speech disorder called childhood apraxia of speech.

But, if you see me around, I am still not going to tell you that she has autism.

You see, she is a three-year-old who has worked twenty hours per week in therapy in order to get to this point (pretty much every waking moment other than nap-time and two half-days per week in preschool).  She is a three-year-old who had to work so hard to learn to do things that come naturally other people.  She has learned how to point, share emotions, respond to her name, and how to talk.

She has learned how to tolerate finger paint on her hands, the sound of a hairdryer, and going to the beach. With the help of great instructors, she has both learned how to play and learned how to learn.  She is a three-year-old who needs the socialization benefits of preschool (or a playdate) so much more than any other child.  And, she is a three year old who deserves the opportunity to not be judged.

So, even though I want to, I am not going to tell you that my daughter has autism. After all, she is just a three-year-old child.

Note: This author has chosen to remain anonymous because she does not want her daughter to be stigmatized.  She writes in an effort to change misconceptions about Autism and hopes to, one day, be able to speak freely without impacting her daughter’s future.

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10 Things I Wish People Knew About Being A Parent To A Child With Autism

autism: noun. one of many terms to help describe (and explain) my son.

Many of you probably already know April is Autism Awareness Month. It was, ironically enough, last April that we received my son’s “official” (ADOS-approved) diagnosis of ASD. Everywhere I turned there were billboards and commercials and news reports and online propaganda screaming at me Autism! Autism! Autism! It was incredibly overwhelming, but ultimately helpful.

It’s a year later, and I’m still not sure what to make you aware of except that I’m still confused. I can’t tell you which autism organizations are the best to support or which you better stay clear of. I can’t tell you which practices are most efficient or which are a waste of your time.

All I can really make you aware of is that being the parent of a child with autism is hard.

With this intrinsic knowledge, my contribution to Autism Awareness Month is this: to share a little insight to those of you parents without children on the spectrum, to those of you who want to stick by your friends and family even though it can be tough.

This is what you should be aware of:

1. We’re overwhelmed most of the time.

All parents feel overwhelmed. Knowing that, add to the mix diagnoses, IEPs, speech therapy, OT, ABA, physical therapy, social skills classes, dealing with insurance companies, hours on the phone to get on an endless number of waiting lists, and then you’ll know a new level of exhaustion.

2. We cry. A lot. 

Tears of joy, tears of frustration, tears of anger. Autism has the uncanny ability to yank emotions out of us and put them on public display.

3. We sometimes get jealous when you talk about your kids.

We’re happy for you. We really are. But sometimes, it’s hard to hear the successes of your kids when we know, deep down, ours can’t experience them. Please keep sharing, but don’t be offended if our enthusiasm isn’t always authentic. Selfish? Maybe. Honest? Yes.

4. We spend a lot of time waiting.

Not just on those waiting lists for therapy. We’re waiting for the next meltdown, for the next bad report, for the interventions to finally start working. We’re waiting for a peace that may never come.

5. We’re afraid.

In fact, we’re terrified. We worry about our children’s future to a near-obsessive level. We fear for their happiness, for the bullying that’s bound to occur, for the unfair hurdles our children are forced to jump over. We’re afraid we aren’t doing enough for our children, that maybe it’s our fault that this has happened and, as a result, our children may not be able to function successfully in this world. We’re afraid because we feel a lack of control.

6. We experience more setbacks than successes.

Most reports from our children’s teachers are negative. They may be laced with a positive spin, but the overarching theme revolves around the struggle. Hearing about how our children are failing to be successful wears us down.

7. We feel very alone. 

Yes, we know you’re here for us. Yes, we’ve made new acquaintances and contacts since the diagnosis, but that doesn’t shake the feeling of standing in a hallway, screaming at the top of our lungs, and having no one hear us.

8. We have a lot of pride. 

We may be struggling, but most days, we won’t let you know it. We may be frustrated with our children often, but we couldn’t be prouder of the successes they do experience because they’ve had to work that much harder to achieve them.

9. We’re still sad. 

Doesn’t matter if the diagnosis was five minutes or five years ago.  We still feel sad. For our children. For ourselves. For the situation. We may look okay most days, but we carry that sadness with us.

10. We appreciate you.

The fact that you’re willing to stand by our side, despite all of the above, means you’re pretty special. You provide us with sanity and sanctuary. We are aware of you and your kindness.

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10 Things I Wish People Knew About Being A Parent To A Child With Autism

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This Is What ADHD Is Really Like

I wake up at 5:30 a.m.; she’s been up since 3:30. I could hear her in her room moving things around, playing, talking to herself. She occasionally came out to check that I’m still there. That we’re all still there. No one has left.

Get her a drink and medicine. Try to put on morning cartoons so I have a little time to get the sleep out of my eyes, but they’re not the right cartoons. She knew we would put on a movie and I just put on PBS Kids. That wasn’t right. It’s not a break down; it’s just an uncomfortable voice asking, “Why, why is this on? Mom, why is this on? Mom, this isn’t a movie. This is TV; Mom, why? I don’t like it.”

I put on a movie. She watches five minutes of the Pets movie, her favorite right now, then starts doing flips off the couch. She crashes to the floor so hard she wakes up her baby brother. I’ve had about six sips of coffee. I tell her to please try and sit long enough that I can get the baby up and dressed.

I’m gone for the five minutes I asked for and come back. She’s ripped a chunk of hair out. I ask her if she wants to go run outside and let off some steam and she says yes. “Go put on socks,” I say. But there’s scissors on the table and an envelope right next to it, so obviously that envelope needs to be cut, right? She makes a beeline for the table and starts cutting our insurance bill into a snowflake.

“Please, go put on socks.” But the hallway is long and it’s more fun to walk like a dog. She barks. Wakes up her father. “Just, get your socks,” I say. She’s in her room for a while, then comes running asking, “What can I do?” I say she can put on socks. “Oh right,” she says. The same thing for shoes, coat, and hair brush.

She finally gets outside, and I see her talking to sticks, petting rocks, and swinging so high. She’s good there. It’s a good spot.

Twenty minutes later, she comes in, hands red, cheeks pink. She sits and has a drink and starts asking “what can I do” again. She needs to know what she can do. I tell her to let me get dressed. We head out and she talks to me while we do errands. We make up stories in the car. She tells one about an evil rabbit that lives under ground and only this one princess knows how to tame. The rabbit doesn’t like anyone but this princess. She brings home a friend and he bites her. So, the princess lives alone to make the rabbit happy. Then it’s my turn, then hers again.

We get to the grocery store and she runs out of the car before we’re in park. I scold her. I know it’s exciting and she knows that inside we will buy things she likes, and she can’t wait to get in and see what’s there.

She wants cakes, cupcakes, candy, Popsicles, Pop Tarts, juice boxes, Lucky Charms. All I see is Red 40, Yellow 5, and Blue 2. Sugar and cornstarch. “No, honey, we must find something else.” She’s straining again. She’s pulling her hair again. “Please don’t pull your hair.” Her teeth grind but she calms down at some alternatives. Goldfish crackers, Apple Juice, and Annie’s cookies. It’s not a breakdown but it was a close one.

We get back in the car. She wants her tablet. I didn’t charge it. She’s bored with stories now, she’s bored with the car, she needs her tablet. Her mind is racing and can’t focus on anything but her tablet. I don’t have an alternative. “I’m sorry,” I say. She starts crying. It’s still not a breakdown. But my knuckles are white on the steering wheel prepping in case this is the one that does it.

Do I have a snack? Yes, always. It’s not the right snack. She wanted what she had this morning. I grabbed something different. The crying turns into a growl. The growl into a shriek; I’m supposed to provide the basics. Even still not a breakdown, though to the untrained eye it may look like it.

Then we go see a friend. She is snappy, but not bad. “Oh, she seems so much better,” they say. “She seems to be doing well,” they say. I nod, because right now yes, she is doing well. Then it’s time to leave. It’s no longer crying and growling; it’s screaming. It’s clawing at herself. It’s drawing blood on her arms and legs. She rips her clothes and throws whatever she can reach. We aren’t supposed to leave yet. The game wasn’t finished. How can she finish if we just…leave? Now is the breakdown.

The ride home is filled with the screams. I get hit with several items she was able to find in the back seat. My seat is getting kicked. I finally lose it. I scream. I scream so loud my voice breaks. Then her fit turns to a sad cry. Why was I so mad at her? She was trying to make me understand how serious of an offense it was to make her leave. Why couldn’t I see that? She’s panting, she’s out of breath, she’s about to throw up. We pull over, and we get out and she gets sick on the side of the road. I ask her if she’s okay and she says yes. Now “what can I do” she asks, totally calm. I tell she can be patient, until we get home.

Dinner is gross. It’s not what she wanted. She won’t eat. She doesn’t get a snack if she doesn’t eat and she says, “That’s fine” because she doesn’t want one. She kicks her brother’s chair trying to get him to look at her. Why isn’t everyone interested in what she is saying? She is talking nonstop while her father and I are trying to update each other on how the kids were, what we’re doing when they go to sleep, and how the morning will go. She starts making yipping sounds, clicking, singing. I tell her to say excuse me and she yells that she did. She did not.

I try to bathe her brother, but the second I’m out of sight she starts crying, “Mommy, Mommy, no.” I cave and let her father bathe him. We sit in her room doing puzzles, coloring, anything I can to not let her mind to playing dolls because that always ends badly. Then it’s time for her bath. “No,” she says. “We haven’t finished.”

I’m doing it again. I’m making her stop something she wants to keep doing. I say we can finish as soon as we get out. The growling starts. I hug her and tell her to think about how the bath is going be. Nice and warm, and calm. She needs the calm.

Her brother is trying to sleep and she’s still singing, yelling, and talking like I’m next door instead of right next to her. “Please lower your voice,” I say. But why? What she’s saying is important. I need to hear every word and clearly. It’s time to get out, the water is getting cold. She’s okay with that tonight. I sigh with relief. Until we see her nightgown isn’t clean. It’s just shirt and pants tonight. Tonight, that’s not okay, last night it was. It’s 8:30.

She collapses and flairs and kicks and screams. Her hands go to her hair again. Why do I keep doing this to her? Why didn’t I know she wanted a nightgown tonight? She doesn’t vomit this time, but it takes until 9:15 to be able to talk.

We still do stories. Now she’s hungry. I get her an apple and she’s okay with that. No breakdown over that part tonight. She cuddles up to me as we read two books. She wants a third and a fourth, but we have to stop at three. She fusses, but again, not a breakdown. I kiss her and tuck her in. In the corner is my sitting spot. A pillow, a blanket, and my phone. I sit until she falls asleep. Tonight, that takes another twenty minutes. Last night it was an hour.

I try to have a ten-minute conversation with my husband before passing out in my own bed. I’m woken up at 2:30 a.m. because “there’s a monster, in the pipes,” she says. She gets on her mat next to my side of the bed and tosses and turns and tosses and turns. I fall back asleep. I wake at 4 a.m. and she’s not there. She’s standing next to the bed looking at me.

“What can I do?” she asks.

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This Is What ADHD Is Really Like

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I Got In A Literal Food Fight At Whole Foods

I’m not proud of the way I behaved. Throwing food, particularly in public, is never appropriate. But before you judge me too harshly, hear me out.

My son is on the autism spectrum. He has behavioral challenges stemming from his disability. Granted, he may not have the best example (a mom who throws food, for a start), but he does have neurological differences that make a simple trip to the grocery store a challenge.

These differences are on full display every Sunday when I take my two sons – my six-year-old on the spectrum and my three-year-old – to Whole Foods for breakfast. I do this to give both boys practice on how to act in public. Also, the scrambled eggs at the Whole Foods breakfast bar are the only ones my older son will eat.

In the car, we go over the ground rules: Calm voices. Safe hands. Stick together. But the moment we enter the store, these reminders seem to fly out the automatic glass doors along with the rush of indoor air.

Something about the Whole Foods environment sets my son off. Maybe it’s the bright lights or the high ceilings or the shelves jam-packed with kaleidoscopic boxes. Kids on the spectrum are more reactive to sensory input, and my son’s no exception.

Right away, his body revs up. His feet move faster. His limbs wing out in all directions.  He makes loud, random noises that echo throughout the store.

We get looks. They’re not the same, sympathetic kind I used to get when my son was a toddler running loose through the aisles or having a meltdown in the produce department. As my son’s grown-up, social expectations of him have changed even though his condition remains the same.

These looks say one thing: Get your kid under control.

What these onlookers don’t know is how much of my life is devoted to just that. It’s practically a full-time job involving therapy appointments, behavioral plans, token systems, and sticker charts all in an effort to control my son or, more accurately, teach him to control himself.

Maybe it was the feeling of being unfairly judged that primed my reaction that morning. Or maybe, after living so long with the day-to-day challenges of raising a child on the spectrum, I was just tired, fed-up and ready to throw something.

It happened at the oatmeal bar.

I supervised while my son attempted to serve himself.  His body was excitable as usual. He glopped oatmeal into his bowl and then hovered over the toppings selection, hopping in place.

I was aware of a man standing too close behind us, huffing impatiently.  With a quick glance over my shoulder I saw that he was tall with a moustache and a red, menacing face.  He spoke directly to my son.

“Slow down,” he scolded.

I don’t care for men with moustaches, but men who use their size and gender to intimidate others are reprehensible to me. And no one, of any size or gender, speaks to my child in that tone.

“Don’t talk to my child like that,” I said.

“Stick it in your ear, Ma’am,” he replied.

“Excuse me?”

He shoved his face a few inches from mine and spoke in slow motion, “Stick – It – In – Your – Ear­–Ma’am.”

There are a dozen reasons why I should have walked away at that point. The man could have been armed and dangerous. At the very least, he was in a foul mood. My kids were watching. I repeated my own mantra back to myself: Calm voices! Safe hands! Stick together!

His lidless, to-go bowl of oatmeal sat perched on the edge of the bar. With a swift nudge, I knocked it onto the floor.

“Sorry,” I said. “I seem to have knocked over your oatmeal.”

“Security!” the man yelled. “I’ve been assaulted!”

He stomped off and then suddenly turned.  He reached into my grocery cart and pulled out a large box of scrambled eggs and hurled it across the floor.

It takes a lot to silence my two boys, but this did it.  All three of us stared at the man, mouths ajar. Uh oh, I thought, this is going badly. We need to get the hell out of here.  

On our way out, I stopped by the cashier and gave her a slightly abridged version of events (“that man just threw eggs all over the floor”).

As I say, I’m not proud of myself. My actions sent the opposite message I’ve been working so hard to instill in my kids: that we are responsible for making good choices even when others don’t. Someone had to clean that mess up as I was too embarrassed and frightened to stick around and clean it up myself.

What I learned from this is that I need to take better care of myself – go to therapy or take up kickboxing but find a better way to deal with my stress.

The lesson for everyone else is this: give my son space to be himself. He’s loud and annoying. He knocks over the occasional display of loofahs and incense sticks.  But he’s trying his best.

And so am I.

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