Monday, March 15, 2021

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

Wednesday, March 3, 2021

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!


Friday, January 31, 2020

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 5thgrade 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!

Thursday, November 7, 2019

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.

Sunday, December 23, 2018

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. 


Monday, November 19, 2018

Please Mind the Gap

It’s cute and picture worthy the first time your 1-year-old dumps the cereal box. Right?  

Matty, age one, becoming a professional cereal box dumper.
When the cereal box is still getting dumped a dozen years later, let me tell you, it’s no longer cute or funny.  And I’ve stopped taking pictures.

As a parent to a child with autism and intellectual disabilities, in many ways I am still living in those toddler years. A constant state of motion and emotion.  My 14-year-old is not capable of using reason when making decisions, and has no impulse control. If you were to look in my purse right now, you’d find a small container of cereal for moments when Matty needs a snack to keep him busy during church or the doctor’s waiting room. The cereal is right next to the extra pair of underwear and shorts in my bag for a “just in case” moment.  

The playlist on Matty’s iPad today, at age 14, is very similar to what 3-year-old Matty listened to. Twinkle Twinkle Little StarIf You’re Happy and You Know It.

Last year when our family went on vacation to a fun resort, Matty and I went to the Elmo breakfast and the Sesame Street parade. He happily hung out with the Sesame Street characters among all the toddlers.
(Can you spot him sitting between Elmo and Abby Cadabby?)

The games we play are the same games a toddler enjoys.  “Mommy, tell Daddy I’m not here!” Matty tells me as he so obviously hides under a blanket on the sofa.  He is waiting for Daddy to say, “Where is Matty? I can’t find him anywhere.”  Next, Daddy lightly sits on the moving, giggling blanket and discovers him as he pulls back the blanket, “Oh THERE he is!” 

“Again!” Matty pleads as we play the Where Is Matthew Game till we run out of energy. 

When I observe what typical kids his age are able to do, there are moments my heart hurts so much, it feels like physical pain. When Matty was in elementary school, watching his classmates effortlessly use a pencil to write their names or even speak clearly could bring me to tears. I so desperately wanted these things for Matty, too.

I witnessed as the gap became wider between Matty and his peers.  At back to school night in third grade, parents took out their child's journals to read some of what they had written so far. The moms and dads on either side of us began reading and smiling and laughing. Matthew's notebook had blank pages. My tears were held back till we made it to the car. Matty doesn't write with a pencil.  He writes on a keyboard with prompting. The gap grew wider still.  

Today, he is the same age as some of his incredible camp volunteers. Kids just a year or two older than him are taking driver’s ed., babysitting for him, studying for the SAT’s and going to school dances. They are preparing for a future of independence. The gap is widening.  Again.  

Matty has learned a lot since he first dumped the Cheerios.  He is a great problem solver (“Daddy, are you tired? Just stay home from work, like Papa does, and take a nap.”) He even runs his own neighborhood business taking out neighbors’ recycling bins each week. He’s almost as tall as me and he knows how to negotiate like only a teenager can.  

Parenting a 14-year-old who has retained some of his toddler tendencies does have some benefits:
He still fits on my lap
  • Being Matthew’s mom keeps me grounded. He teaches me what is truly important in life.
  • I have the honor of living with someone who will always view the world through the eyes of a child – with innocence and honesty.
  • He calls me Mommy instead of Mom (which I love).
  • He asks to sit on my lap. (Luckily, he is small for 14)
  • The Tooth Fairy and Santa Claus will always come to our house. 
  • I can expect that a box of cereal will be dumped only three times per month on average (which is a decrease in frequency from toddler days). That’s a WIN!

Amy McCoy is the author of Little Big Sister, an elementary school novel told from the sibling's perspective of what life is like to grow up with an older brother who has autism.  

Monday, May 21, 2018

The Self-Checkout Lane

"Please wait. Help is on the way,” the robot computer voice tells Matthew and me. We were using the self-checkout register at the grocery store on Sunday.  

Really? Again?  I remind myself to take a deep breath so I don’t lose my mind. 

“Please, Matty, put your hands in your pockets,” I manage to say in a calm voice for possibly the 103rd time that day. Anyone who has used a self-checkout lane knows that there is a specific technique to the process. If you put your item in the bagging area too quickly after scanning it, you will be scolded by the computer. But if you can’t stop yourself from touching the baggage area because you are extremely impulsive, (enter Matty and his hands), the computer will think you need a lot of help. The self-checkout lane with Matty as my shopping assistant depletes my daily allotment of patience in about 30 seconds.

“Unexpected item in baggage area,” the computer’s voice announces.

Unexpected. I get it, computer. I know all about unexpected. I have a long list of unexpected. It’s unexpected that my teenager enjoys watching the preschool TV show, Peppa Pig. It’s unexpected that he still needs help in the bathroom and probably always will. It’s unexpected that my almost 14-year-old son can’t cross the street independently.  But the unexpected you are presently referring to, computer voice, are my son’s impulsive hands leaning onto the bagging area.

“Please wait.  Help is on the way,” the computer repeats.

That’s our life as autism parents.  We are standing in the self-checkout lane of life.  Navigating unexpected conditions.  Being told that help is on the way. We need so much help some days we don’t even know how to measure it.  How to ask for it.  

Then I see Matty jumping up and down, flapping with excitement. We call it “smiling with his whole body” when the flapping starts.  The self-checkout employee was walking toward us. Help was on the way (reason for the flapping). He swipes his employee card to reset the machine, which silences the computer’s scolding. For now.

“Thank you,” I tell him as I gently relocate Matty to the other side of me so my body blocks him from leaning into the baggage area. “Thank you, Kevin!” Matty hollers (he’s a good reader of name tags).  I continue scanning, but before I know it, I hear the familiar voice saying, “Pease wait. Help is on the way.”

Really?  Again? 

Kevin comes back over with his employee card to save us once more. If only the solution to the help I really need was as simple as swiping an employee card.  

Matty and his new friend, Kevin.  Bagging groceries together.
But Matty, somehow finds the help he needs. He makes his own way.  He finds the most incredible teachers, aides, therapists, babysitters, camp counselors, friends, grocery store employees – the angels in his life. They enter his life and help him from point A to point B.  By the end of the self-checkout lane experience last Sunday, Matty had Kevin bagging the groceries with him.  Their conversation centered around Matty’s favorite topic: what Kevin was planning to eat for dinner that night.  Matty even pointed out to Kevin, “Oops you forgot one,” when Kevin didn’t put the last bag into our cart.

It’s not part of Kevin’s job – to bag our groceries or put them into our cart.  But Matty made that happen.  In our life full of unexpected situations, I have to remind myself, Matty will always find the help he needs.  Thank you, Kevin!

My boy - teaching me a new life lesson every day.