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.

Monday, April 2, 2018

World Autism Day 2018

Little Matty 2007 - age 3 -
Back when seeking answers and
diagnoses felt like a full time job.  
Autism - the word that frightened me to my core when I first learned that it was a piece of Matthew's puzzle many years ago.
Autism - showed up like a punishment, a heartbreak.
Autism - has meant years of midnight Google searches - seeking answers while discovering more questions.
Autism - has meant learning odd terms like "disregulation" and "perseveration" and "assistive technology" - and how these words relate to Matthew.
Autism – has meant feeling grief in my heart when I watch what boys Matthew’s age can do on their own. 
Autism - means having hope - advocating for better and more specialized services at school, becoming Matthew's best advocate.

Autism - means gratitude for the teachers and specialists in Matthew's life who have taught me to understand my own son in new ways.
Autism - means finding joy in the little things in life while viewing the world through Matthew's twinkling eyes and bright smile.
Autism - The word that now makes me proud. I am proud to be an Autism Mom. Proud of Matthew for the progress he is making.  Proud of myself for never giving up on him. Even on the most challenging days. 

It's Autism.  It's fear, it's sleep-deprivation, it's heartbreaking, it's confusing - but it's also hope, love, bright smiles and our life.
Matty today, age 13.5

Monday, March 5, 2018

Take THAT, Epilepsy: The who, what, when, where and why of seizures

Matty - waiting his turn
for monthly bloodwork to
make sure his seizure medication
is working properly.  
Epilepsy wears a poker face. 
Epilepsy wants to keep me in the dark. 

I already know Who (Matthew) and What (Seizures).  It’s The When, The Where and The Why that I am desperate to discover. 

I somewhat know The Why.  Approximately 1/3 of people who have autism also have epilepsy, according to Autism Speaks.

But The When and The Where. 
I need to know.
When will he have his next seizure?
Where will he be?

The further we move from the last seizure - the more days, weeks, and months that pass; the more I believe we are in the clear.  The distance from the last seizure strengthens my hope that the seizures are not coming back, that they are finished and part of the past.

I lean on this irrational confidence as I explain to my babysitters before leaving the house, “he has to take this medication with his dinner.  It’s for seizures, but he hasn’t had one in years, so don’t worry.  He won’t have a seizure while you are here.”  I don’t even show them what to do if a seizure happens because my phony confidence has told me I don’t have to.

Epilepsy’s absence has tricked me into believing that it won’t come back. 
That we have found the right medication. 
That we can close the door on epilepsy.

Wrong.  Epilepsy pushed the door wide open this weekend.  Again.

Two days ago, Matthew experienced a grand mal seizure.  This was after 14 months of remaining seizure free.  Feigning my own bravery and calm, I put on my poker face as I helplessly watched his body shake uncontrollably as he lost consciousness, and heard the odd guttural sounds coming from his throat. Greg’s body was on auto-pilot as he gently positioned Matty safely on his side, his face two inches from Matty’s face, both of us just waiting for it to be over.  We have been through this dozens of times before, but each seizure shakes me to my core. 

I want to scream at Epilepsy, “LEAVE HIM ALONE!”

About an hour after the seizure,
he's still resting - this photo was
taken to text to my family to
show them he was OK.
But Epilepsy puts me in my place. “I can come and go whenever and wherever I please,” Epilepsy declares.

I have never experienced an earthquake, but I can imagine that people who live in areas prone to earthquakes have to tell themselves they will be OK when one hits. There are no warning signs, earthquakes just happen.  Some are massive, life changing, damaging, and frightening; while others are minor, and barely felt.

It’s a protective way of thinking. A defense mechanism. If I convince myself that he has outgrown seizures, or that the medication he is taking will protect him from having another one, then we can go on living without fear.  But really, the next seizure, like the next earthquake, is always lurking.

There are many things in life that we simply cannot know.  
The Where and the When of seizures are two of these unknowns. 

Our children are our teachers.  

Matthew is teaching me that I can’t live my life in fear of anticipating the next seizure, the next earthquake of our lives.  He is teaching me that it’s necessary to have hope.  That I can’t live in the land of “What If” because this fear-based thinking will lead me to a life full of limitations.

My three favorite “A words” are what help me the most here.  I learned these words in a yoga class many years ago taught by a deeply gifted teacher (and friend), Kristina. These words help me remember how to refocus any lurking fears. 

Accept that I have no control over epilepsy.  I cannot know Where or When the next seizure will happen.

Allow myself time to process what has happened after each seizure.  Time to continue researching the best treatment options and medications for Matty.
He bounces back the next day!

Appreciate that we have found a medication that works about 95% of the time.  That we have great doctors and medical professionals helping us.  That our family and friends are eager to support us any time of day or night.  That Matthew bounces back the day after a seizure.  That Matthew has so many lessons to teach me about life.

Take that, epilepsy – you can’t leave me in the dark.  I know too much.   I have a great teacher. 

That's my teacher!
Amy McCoy is the author of the children's novel, Little Big Sister , a realistic fiction account of what life is like for a sibling growing up with an older brother who has autism.