The Joy of Bus Duty

Matty clapping at Bus Duty!

Last week, Matty visited his elementary school in CT - we arrived just in time for him to assist with Bus Duty 🚌. (Arrival time was preplanned of course 😊).

He saw his former teachers - they marveled at his height, his low voice, and how in the eight years that have passed since he was a student there, he was still so joyful about his favorite things. Namely - keeping track of the busses and calling the students for dismissal in order.

Being back at my kids' elementary school brought back a lot of great memories - this school community was truly inclusive. Both of my kids made many friends there - their teachers were (and are) dedicated professionals who promoted acceptance and inclusion everyday.  

I recall third grade as the year when Matty's differences were felt deeply. As I sat at his desk for back to school night, his teacher told the parents to take out their child's writing notebook and read some entries as we were getting settled. I heard giggles from the parents sitting nearby as they enjoyed reading the cute entires made by their children. I willed my tears to stay inside until I got to my car. Matty's notebook was empty. He couldn't write with a pencil (only on a keyboard). Third grade was the year that his educational gap widened to new depths. 

His third grade peers were curious about their friend, Matthew. Why was he going to speech, OT and PT? Back in the younger grades, they were invited to go with him once in a while to these services as a peer role model. In third grade, it's not as easy to leave the classroom during instruction - so they no longer were invited to go along. 

Matty and his friends at field day in 4th grade. 

It was around this time that I started writing my book series, Little Big Sister. I knew I wanted the book to be written at the third grade level for readability and content because that's the year I realized his peers had some questions and were ready for answers. 

Last week during bus duty, Matthew even noticed that one of the busses was missing from the line up. He still remembered the order of the busses way back from third grade when he loved earning the privilege of looking out the window to watch the bus dismissal process. I pictured him earning this privilege and choosing a friend to watch with him. Acceptance and inclusion at its best.

I admire the way his mind works!

Matty with some of his besties from elementary school.  

Autism Belongs Everywhere

Matty had an opportunity to be a reader at our church service last weekend.  

The boy who they told us might never speak.

He was a leader to all and showed what's possible. He did it his way and was appreciated and accepted for being himself. Out in the real world.  

When Matty was a younger child, I struggled with wondering if his school placement should be a typical school or a specialized school for students with disabilities. *

A friend who's son was a few years older than Matty challenged me with her view.

She said - when our kids become adults, will there be a specialized grocery store for them? A special time for them to be at the movie theater or restaurants? As parents, should we be expected to only bring our kids out into the world during designated times? 

OR

Imagine a world where our kids and loved ones with disabilities belong in the grocery store, the movie theater, restaurants and the world -  at all times - just like anyone else.  

This vision spoke to me back then and still speaks to me now. 

I encourage families like ours to continue showing the world what's possible. 

Autism belongs in every space and community.  

Autism belongs everywhere. 💙💙

* Written with respect for families who send their child to a specialized school because educationally or locationally, that's what makes the most sense for their child. 

Our Turn for Covid-19

Doctor at testing site: He’s positive. 

Matty at the PCR testing site.

Me: (shocked - speechless, and a million questions traveling from brain to mouth). 

Matty: Do I have the Virus, Mommy? 

Me: Yes 

Matty: (shocked - speechless, he probably has a million questions, too). 

Exactly one year ago, our country was settling in for two weeks of sheltering in place – whatever that meant. Our new daily vocabulary began to include terms like quarantine, pandemic, flattening the curve, essential workers, lockdown, PPE, social distancing, remote learning, hybrid and WFH (work from home).  

Acquiring a sudden new vocabulary reminds me of becoming a special education parent. We learn and incorporate confusing terms into our daily lives. From IEP (Individualized Education Plan) and CSE (committee on special education), to ABA, ADL, APE, ASD, AT – and these are just some of the abbreviations for the “A terms” – you see what I mean. 

 COVID-19 unexpectedly entered our home a year after it started. It can happen in any family, anytime. 

 Autism is also unexpected, but can happen in any family, anytime. 

First day of symptoms

    For a full year, Matty learned that Covid is something we don’t want to get. 

    And - now he has it. 

    He must have so many questions of his own. 

    In the beginning, it was apraxia that made speaking verbally a challenge for     

    Matty. Now, he's able to speak verbally, but his autism makes it difficult for    

    him to express his deeper feelings fully. He has a lot to say, so many deep    

    thoughts – but he often struggles to find the words to express these deeper    

    feelings, thoughts and questions. 

    

My job is anticipating the deeper questions he might have right now. 

Possible Question (PQ): How did I get the virus -is it my fault? 

A: It’s not your fault that you have the virus, 

PQ: Where did I get it? 

A: We don’t know where you got it. Germs are everywhere.

PQ: Will I get all better? 

A: The doctor says you will feel better in a few days. 

PQ: Mommy when will the virus go away? 

A: Matty this is what everyone in the whole world wishes they knew the answer to. 

PostScript: We are blessed that our family was only mildly affected by Covid-19 - and we honor the pain and suffering of the thousands of families who have lost loved ones over the past year.

Already feeling better & at virtual school

The Miracle of the Prevented Meltdown

Last week, Matty asked to go to Whole Foods together so he could buy two of his favorite items: Cranberry Juice and frozen Gluten Free/Dairy Free Mac and Cheese. Upon entering the store, Matty walked straight to the frozen aisle to get as many green boxes of Mac and Cheese as I’d allow (usually four). When he opened the giant freezer door, we noticed the empty shelf where we usually see piles of his favorite green box. “Oh no, Mommy.”

“Let’s go get your cranberry juice,” I said as if a false cheerful voice could lift some of his visible disappointment.

We pushed our cart over to the next aisle full of refrigerated drinks. They had every flavor BUT cranberry in stock. “OH NO, MOMMY!” 

“Let’s go ask at customer service,” I said in a calm and hopeful tone. “Maybe they have some in the back.”

I was prepared for a drop down, lay on the floor meltdown with screaming and stubbornness and tears. My heart was beating in between my ears, signaling my own awareness of how close Matty was to his breaking point.

People with autism often have difficulty expressing when they are feeling overly anxious or overwhelmed, which leads to an involuntary coping mechanism - a meltdown.

A meltdown is not a tantrum. It is defined as "an intense response to an overwhelming situation where the individual with autism is unable to exhibit control".

A meltdown in a different grocery store
on a different day. 

We arrived at customer service and I explained our situation, practically begging the woman working there to sprint to the back storage room and magically return with our items.

She returned with Ed, a veteran Whole Foods worker who patiently talked to Matty and me. He told us he checked the back and unfortunately, there was no cranberry juice or mac and cheese back there. He offered to place a special order for our items and call us when they arrived. 

 

Matty proceeded to interview Ed.

  

Matty: When will you call my mom?
Ed: Probably by Friday

M: What time?
Ed: When the truck arrives and we unload it, I’ll find your juice. Then I’ll call your mom to come pick it up.

M: Do you have my mom’s number?
Ed: (showing Matty the paper I gave him, smiling through his mask) Your mom gave it to me right here.

 

This quick interaction with Ed meant no meltdown. Matty felt heard and understood. This was the miracle moment.    

About five minutes later we were in the car getting ready to drive home with our empty bags. My phone rang, it was Ed calling for Matty! He called to tell him he placed our order and he’d see us on Friday. That was the greatest gift. Ed knew that Matty needed confirmation. Thank you, Ed, for treating Matty with goodness and respect.

Matty, enjoying his Cranberry Juice from Whole Foods!

 

He's Ready

Matthew at age 15

Greg’s Colleague: “Do you want to get dinner soon with our wives?”

Greg:  “Sure, let me give Amy the date so she can hire a sitter.” 

Colleague:  “A babysitter?  How old are your kids?” 

Ouch. Deep Breath. Sometimes we forget that most kids Matthew’s current age, 15, ARE the babysitter. 

Matthew’s version of 15 is significantly different from most kids. He enjoys watching the preschool TV show, Peppa Pig. He wants a note from me in his school lunch box every day. We still cut his food for him and remind him to use his fork, not his fingers, to eat it. Only one inch shorter than me, he often asks to sit on my lap. Most teenaged boys call their mom “Mom” while I am still “Mommy”. 

Sitting on Daddy's lap last week

Children's Message

At church on Sunday mornings, when the young kids are invited forward to sit together for the children’s message, Matthew proudly sits on the ground among the preschool and elementary aged kids, unaware or unconcerned with the drastic age (and size) difference.

About five years ago, I wished that we could add an accommodation to Matthew’s IEP (Individualized Education Plan) that would allow him to stay in elementary school forever. These were safe and predictable years in a comfortable school environment. With this farfetched plan, he’d be in 5^thgrade forever. He’d never have to go through puberty or become an adult with autism. Perfect plan according to me back then!

Reflecting on this, I realize that I’d become skilled at parenting a child with autism. But parenting a teen and eventually an adult with autism was not part of my skill set.

But here he is, a freshman in high school. A real teen with autism on his way to adulthood.

When Matthew was in special education preschool, I sat on a mini-chair across from Miss Debbie, his brilliant special education teacher at a parent conference. “What will he be able to do when he gets to elementary school?  Will he be able to talk? Make friends? Write his name?” Somehow, I thought she had a crystal ball with the answers to my questions about his future.

Matthew and Miss Debbie in 2009

Miss Debbie looked at me with so much hope in her eyes and told me confidently that he was well prepared for all of these challenges and more. “He’s ready, Amy.” He was completely ready to experience all that elementary school had to offer. (At that point of course, I wanted him to stay in preschool forever.)

As 15 will become 25 in a flash, I realize what’s different now. I AM. I’m not that scared mom I once was, wondering if he will ever walk or talk or make friends. I’m not that fearful mom unwilling to move forward. Matthew showed me the way - he made friends, wrote his name and began to talk in his own time. On his own schedule.  

Matthew will become an adult with autism and I will acquire the skills needed for this new job. Will it be easy? No - there will be rough patches and smooth stretches. I wish I could ask those crystal ball questions again - Will he be able to work? Will he ever be able to live on his own? Will he have meaningful friendships and be happy? Miss Debbie's words from many years ago echo in my head. He’s ready. Ready for all that high school and adult life have to offer him. He will show me the way like he always has!

Vacation Time With Some Old Favorites!

Top 10 Things Even My Closest Friends Might Not Know About My Life as an Autism Mom

      1.     I call the plumber. All. The. Time.  Matty likes flushing things down the toilet.  Once, he flushed his toothbrush because, “I don’t want to brush my teeth, Mommy,” he told me with his sparkling smile. 

2.    Matty will rip any paper given to him.  Including money.  He just can’t stop himself. 

This just happened yesterday.
He said he didn't need it!

3.    When I am out in the community with Matthew, I’m always “on” trying to guess his next unpredictable move.  So, if you see us out and I look distracted, you’re right. And if you and I tried to have a conversation during this time, I’m sorry but I didn’t hear a word you said. Call me after 8:30pm when he’s asleep – that’s when I can concentrate!

Matty and Kristen - one of his
fave babysitters who is only
22 months older than him 

   4.    Matty will always need a babysitter.  I guess the job title changes as his sitters become closer and closer to his actual age, and soon it will be companion or support staff.  We will always need help.  Last week we paid close to $100 to see a movie (movie tickets, Greg’s popcorn, and babysitter fee).  

   5.     When I watch what other kids his age (and younger) can do independently – even something as simple as walking alone to the school bus stop, my heart hurts. It’s like being in physical pain. I have to force myself to focus on something else immediately. I’ve learned to be good at this over the years. 

6.    I will always wonder if there is more I should be doing to help Matthew. Does he need more hours in speech or OT?  Would a different school setting be better for his unique needs? Is there something else out there that can help him - something I don't know about yet? What I’m doing never seems like enough. (This is a common feeling for parents raising a child with disabilities.) 

7.    I have to literally “hold it in” if I am out in public with Matthew and need to use the restroom. I can’t leave him alone (so if you see the two of us out, please offer to hang out with him for two minutes while I go use the restroom!)

8.    When we go places as a family, we usually arrive in two cars. We need a clear emergency exit plan. It’s really difficult for our family to do things together because of Matthew’s unpredictable behaviors. Quite often, my husband or I will leave early with him from special occasions like community events and meals with our extended family.

9.    Watching someone you love have seizures is terrifying.  We are so lucky to have found a medication that controls Matthew’s seizures, yet our reality is knowing that the seizures can come back anytime. 

10.  Matthew has taught me more about life and love than any other human. He has opened my eyes, my mind and my heart to the fascinating world of autism. What a marvelous tour guide I have.   

Amy McCoy is the author of the Little Big Sister book series for elementary school aged readers. www.littlebigsisterbook.com

I'm So Happy I Didn't Break Both Foots

“I’m so happy I didn’t break both foots, Mommy,” Matthew told me last week (two days after he fractured his ankle in gym class).

All smiles with the broken ankle.
Wheelchair needed - Crutches are too difficult for his coordination

His words stopped me in my tracks. He didn’t ask, “Why me?” or say, “I’m so mad I can’t walk around”. His thoughts went straight to positivity. Directly to gratitude.  Even after breaking a bone, a time when most people would feel sorry for themselves, he told me what he was happy about. 

The pure joy and the unfiltered emotion that Matthew shares with me each day is a gift. "Happy December, Mommy!” he exclaimed on the first day of the month a few weeks ago.  He claps his hands with delight as he reads a text from a babysitter who shared what she plans to eat for dinner. Yes, meal information is  worthy of Matthew’s applause.

He knows how to live in the moment and is my greatest teacher for this challenge.  I tend to get stuck on the “what ifs”.    

What if he has a seizure while he is on the bus ride to school?  

What if he never learns parking lot safety or how to safely cross the street?  

Who will take care of him when I am no longer able to? 

Matty and his favorite car

The list goes on.  And on.  

When my mind wanders to these uncertain places, Matthew knows how to bring me back to the present moment. “Mommy, look, the gray car is back!” he exclaims as he looks out the

front window at his favorite car belonging to neighbors across the street. “Mommy, that was fun,” he tells me daily after we each say our favorite words for the days of the week (meaningful Monday, terrific Tuesday, you get the picture). 

He’s teaching me to appreciate the little things. To live in the moment.  I get a human daily reminder that a round of applause for Taco Tuesday is customary in his world. 

“Mommy, I’m so glad I didn’t break both foots.”

Me, too, Buddy.  Thank you for giving me the gift of present awareness, and helping me learn how to by-pass the what ifs so I can follow you directly to mindfulness and gratitude.