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. 

Friday, January 5, 2018

The World Through Blue-Colored Glasses

Cheering on neighbors while watching
the morning "Car Show"

I often wonder, how does Matthew see the world?  If I could see the world through his eyes for one day, one hour...would my questions be answered? I know Matty’s view of the world is drastically different from the world I see.  He knows how to take an ordinary moment and make it extraordinary.  When he looks out our front window each morning, he tells me he is watching “The Car Show”.  He has memorized our neighbors’ schedules and routines, and knows exactly when their cars will pull out of their driveways leaving for work and school.  He cheers them on by name from his perch at the picture window in our dining room, he actually claps for them.  To him, looking out at the world through his blue-colored glasses, it’s the car show he sees.  When I look out the same window, I see a busy suburban street, not a car show.  The way this child views the world amazes me.  

At the optometrist, choosing his
new blue frames

When Matthew needed a stronger glasses prescription a few months ago, I told the optometrist that he requires a frame that’s impossible to break.  When you are outfitting a child who once pulled off his own arm cast, you have to realize that destroying glasses would really be a piece of cake for him.  We were shown two options for indestructible frames. Matty chose the bright blue ones.  Honestly, at first I was not thrilled with his choice because the glasses look like they are part of a Halloween costume and purchased at Party City. Now, seven months later wearing them every day, these glasses have become his trademark and although he enjoys taking them apart, they have withstood the 'Matty test' and are proven to be indestructible.  The glasses are just like his optimism, his excitement for life and his ability to turn ordinary into extraordinary – all are indestructible.

This happens a few times a day.
But we just pop the lenses back in!
As Matty and I are driving together, and a car nearby beeps the horn (a common occurrence here in NY), I find myself uttering “jerk” - or something worse - under my breath to the horn beeper.  But Matty loves the unexpected beeping, he claps his hands and joyfully hollers, “AGAIN!”.  His worldview changes my perspective and my thought pattern in a moment. 

Last weekend we were at our dear friends’ house for a New Year’s Party.  Ten families arrived through the front door over the course of the first hour of the party.  Matthew enthusiastically greeted each family with his triple hop, a few hand flaps and then took each dad by the hand, leading him through the party to greet his own dad who was inside by the fire, enjoying appetizers and conversation.  The other boys around Matty’s age at the party were in the game truck playing video games and drinking soda (what boys are supposed to do at a party).  Through his blue-colored glasses, Matty saw the party as an opportunity to make sure each party guest felt welcomed as they entered and that they all connected with his dad.

So much love between Matty and Papa
A few years ago, my dad (Matty’s Papa) was giving a sermon in church (he became a licensed minister in his second or third season of life).  When he was finished delivering his message and turned around to sit down, Matty, who was about 9 years old at the time shouted, “Great job, Papa!” as he clapped for him.   Papa turned back around, returned to the pulpit to share with the congregation, “I hope God sees me the same way that Matthew does.”  This was before Matty started wearing the blue glasses, yet his ability to see the extraordinary and to share love and joy was as strong as ever. 

Of course there are moments when seeing the world through blue-colored glasses can be hazardous, like when Matty forgets to look both ways before crossing the street, and his limited understanding of stranger danger. He can’t be left alone; his extreme impulsivity always gets the best of him. He keeps us on our toes for sure.  But the world he sees through those blue-colored glasses is a place that I invite all of us to see.  He only sees the good in people and in situations through those glasses. What a beautiful way to see the world. 

When I tried them on once, the world was blurry.  But I know his view is infinitely more positive and optimistic than mine.  He takes the ordinary moments and makes them extraordinary.  I have a lot to learn from my boy.