My Candle Snuffer

Remember toys like these?   

Push this, twist that – and watch what happens.   Many individuals with autism are highly interested in cause and effect.   Matthew never met a light switch that he didn’t try or a toilet he didn’t have to flush - just for the pure enjoyment of observing the cause and effect. 

Matthew is a cause and effect junkie.   He has always loved pushing buttons to “see what will happen”.  His favorite is watching lights go on and off.  At Christmas time, we have our outside lights on a timer.  Matthew has learned how to adjust the timer so he knows exactly when the lights will go on (4:13pm).  He eagerly awaits each afternoon in December, and at 4:13, the squeals of delight sound as if it’s the first time he’s ever observed such an exciting event.   I love observing his joy.

Although the clapping in this photo is not in reaction to watching our Christmas lights go on, this image does accurately show the joy M feels when he watches them light up at 4:13.

At church, when he was a bit younger, Matthew loved watching the alter servers snuff out the candles at the end of the service.  (Lights going out – cause and effect!)  Our pastor recognized his interest and asked if Matthew would like to become an acolyte, in other words, would Matthew like to learn to snuff out the candles at the end of the service?  YES! 

So, Matthew has become an acolyte.  His name is at the end of the weekly church

program.  He's official.  At the end of the service, he takes the snuffer, and extinguishes 8 candles on the altar.  The first few times, as we watched, I tightly squeezed Greg’s hand in anticipation of Matty toppling one of the candles over and setting fire to the church.  But the ministers who guide him always patiently allow him to be as independent as possible and the fire department has not (yet) been involved.  

To most people, the word, extinguish, means to put out a flame.  To the autism parent community, extinguish also means choosing a challenging behavior, and using strategies to decrease the behavior.  For some individuals with autism, it’s extinguishing self- injurious behaviors such as head banging, for others it’s extinguishing destructive behaviors such as destroying the belongings of others.  For Matthew, with the help of teachers and behaviorists over the years, we have worked hard on extinguishing many of his challenging behaviors.  The work continues.  While his peers are at sports practice and after school activities, Matthew is working with his behaviorist on how to maintain personal space when talking to others and how to remember to not touch items that may be hot like the toaster, the oven or the grill. 

Why is this candle snuffing job at church such a big deal?  Please remember, Matthew is a child who has been receiving physical therapy (for gross motor delays and weakness) and

occupational therapy (for fine motor delays and weakness) since he was 9 months old.  He still receives these services today, twice weekly.  When I think about the amount of fine motor control and coordination it takes to snuff out a little flame with a large candle snuffer – I appreciate that his ability to do this job captures the progress and growth he’s made over the years.  With the support of skilled teachers and therapists, he has grown in his attention to detail, gross and fine motor progress, maturity (a little bit) and his eagerness to try something new. 

Watching Matty snuff out the candles at church also gives me hope that he will continue to learn new skills and extinguish the challenging behaviors that don’t serve him.  While autism does not define him, it will always be a part of who he is.  Lifelong.   

While I know that we will always be working on a challenging behavior to extinguish throughout his life, I am proud of my boy for finding a way to use his high interest in cause and effect to do something helpful and hopeful.

 Here he is – a short clip of Matthew candle snuffing. (Sorry it won't work on a phone, but will play if you view on a computer)

My Impulive Mac Genius

Matty - my Mac Genius

Last weekend I was out with Kathryn for the evening.  Periodically, I looked down to check my phone for messages.  I noticed I had an unusual amount of new emails for 8pm on a Saturday night.  Curiosity got the best of me, and I checked.  There were about 10 emails from Apple telling me that the owner of the email address mattymac2004@gmail.com (guess who) has tried to reset his apple ID.   Lots of times.   If anyone can figure out how to bypass a password or reset something on an iPad, it’s Matthew.  The rule in our house about iPads is – DON’T GO TO SETTINGS.  But he just can’t stop himself.

The iPod in Polish!

Matty has a small iPod in his room connected to a speaker specifically for playing his “sleepy music”.  Here is what it looks like after he's had his impulsive button pressing session with it.

Yes, he changed the language to Polish (he broke that “don’t go to settings” rule).  I was afraid he set some alarms to go off in the middle of the night and I don’t know the Polish word for “alarm” or “clock”.  Luckily, it only took me about 12 minutes to get it back to English. 

Have you ever forgotten a password on an iPhone, iPad or other device?  After trying out different passwords, you receive a message that you are locked out for a certain time period.  It usually starts with 15 minutes, then builds up to an hour, and then lengthens from there.  A few months ago, Matthew successfully changed the password on his iPad (yes, he broke the “no going to settings rule” yet again).   Unfortunately, he did not remember the new password.  The next time he was trying to get into his iPad, it was a huge problem.  

I did the math on 84,287 minutes and realized it was 2 months.  Off to the Apple store we went.

As the Mac Genius in the Apple Store was helping us reset the iPad, he looked down at Matthew, who was sitting at the kids’ table checking his email on the store iPads.  With a surprised look on his face, the Mac Genius said, “Wow, that’s the first time a kid has ever set up his email account on one of our iPads”.  I am pretty sure that was meant as a complement.  I think I can be hopeful that there may be a place for Matty among Apple Store employees when he grows up. 

Impulsive.  Compulsive.  These words describe Matthew well.  He is acting on impulse all the time, and he is also obsessive about his actions. A lot of kids with autism and other disabilities face these challenges.

 

Parking lots are dangerous places for us.  If Matthew sees something he wants to touch, he is going to dart across to get to it.  Thankfully, we live on a quiet street, because he will run across without looking.  He has to touch the neighbor’s garbage cans, or see what they put in their recycling cans.   The buffet at Whole Foods?   Forget it.  He will touch every food he gets close to.  Including the steaming hot pot of white rice.  If you see us there, I either have a hand on him or am constantly reminding him to have “quiet hands”.   

 

Do you know what this piece of plastic is?  It's a seat belt lock.  It deters Matthew from taking off his own seat belt in the car.  Of course he does know how to take the lock off, it just takes him longer when he has this on. 

 We are trying to give him more privacy and independence in the bathroom.  After all, he is 11 years old.  Here is what happened recently in the bathroom when he said he needed his privacy.

He unscrewed the hot light bulb.
"Just to see what will happen"

So, what happened?  One less light bulb and
one new mess for mom to clean up.

We have been breaking in a new sitter for Matthew.  I showed him (yes, a male sitter in high school!) what to do if Matthew locks him out of the house or if Matthew locks him (the sitter) in his room (yes, this has happened before!).  I showed him what foods are safe for Matthew to eat and taught him what Matthew will try to get away with.  When I asked if he had any questions, he asked, “what do I do if I have to use the bathroom?”.   In other words, what happens during those 30 seconds when Matthew is not being watched?  Great question!  That’s what it feels like to live with Matthew.  He needs eyes on him all the time.  The impulsivity – it’s draining and exhausting.

Last week, I had to take the kids to CVS.  While we were paying, the customer ahead of us who had just left the store came back in and was looking through her bags.  The clerk noticed and asked if everything was OK.  She responded that she was looking for her keys.  Quickly and impulsively, Matthew walked a few feet over to where she was standing looking through her bags and asked, “what if you can’t find your keys?”  She responded, “then I will need a ride home”.  So he said “Where do you live, my mom can drive you.” 

So if impulsive is how he functions, I will take it because he has such an impulsively kind heart.  Sure, he causes exhaustion, weariness, anger and a host of other emotions at home with his impulsive behaviors – especially on the electronic devices.  I waste tons of time going to the Apple Store and hours spent on-line with Apple Support.  It is hard to clean up the messes, both physical and emotional, that he brings on.  But at the end of the day, I am so thankful Matty is mine, because he impulsively offers rides home to strangers in need and sends me these messages daily.

 

On My Toes - Learning about Grace

People who see me in action with Matthew will often comment, “well, he sure keeps you on your toes.”    Greg and I are always anticipating his next, unexpected move.  Sometimes it’s an amusing move, like the time in church at the end of the service when he ran up to the pulpit to wish everyone a “happy Sunday” on the microphone.  Other times, it’s a dangerous move, like the time we were in a rental car and had only activated “child lock” on his door, but not on Kathryn’s.  Lesson learned.  He reached across Kathryn, manually unlocked her door and then opened her door while we were driving on a highway.  Thank God no one got hurt.  It took me months to get over that moment.  

For those of you who have never had to use it, "Child Lock" is found inside the car door and can be activated by pushing down this little switch.  Every car has it on the back car doors. 

 Matthew was invited to a family friend’s movie-themed birthday party last year, and we went together for about an hour of it.   All of the kids sat on bean bag chairs, eating popcorn while watching the movie.  I stood in my “ready stance” to the side of the TV and DVD player.  I know my boy, and when he sees a button, he is going to push it – it’s only a matter of time.  I was impressed that he waited about 20 minutes into the movie before darting to the DVD player to attempt his attack on pushing the DVD player’s various buttons.  I like to think that my time as a high school athlete helped develop my quick reflexes to defend the DVD buttons in the nick of time.   Crisis averted, the movie played on!   

Yup, I had skills back in the 80's!

I look at other kids his age and am jealous for a moment.   Jealous that their parents don’t have to strategically plan where they sit in church so their child won’t reach the pulpit microphone before they can catch them.  Jealous that their child understands the basics of car safety and won’t try to open a door in a moving car.   Jealous that their child will sit through an entire movie without trying to push the buttons on the DVD player to examine the cause and effect of that action.   Jealous that they can sit and relax and not have to anticipate the unexpected in each moment they spend with their child.   Keeping on your toes is exhausting.  Take it from me.  

In these moments, I know I am not graceful in my thoughts or my movements.  I am tripping over my own two feet after deflecting his reach for the DVD player.  I am hyperventilating after realizing the dangers that we avoided in the car.   I am not graceful.  I am clumsy.  I yell, I scream, I cry, and I learn.  I listen, I observe, I hope, and I pray.  I will continue to trip over my own two feet as I wait for Matthew’s next unexpected move.  I am not moving gracefully, but I am given grace.  The term, grace can be interpreted in many ways by different people.  The definition I relate to calls grace a gift.**  I have been given this gift.  The gift of Matthew.  Life gives us plenty of unexpected moments.  Thank you, Matty, for keeping me on my toes.  

On the microphone at church, wishing everyone a "Happy Sunday"!

 As I was finishing my edits on this piece, Greg told me he and Matthew were at CVS this evening – he turned his back for one moment and turned around to find Matthew at the MoneyGram machine – he was about to wire money using Greg’s phone number to someone in Belarus.  Seriously, you can’t anticipate that move!  

** Thank you, Dad, for helping me out with your "word geek skills"!

What's Your Favorite F-Word?

No, no.  Not the
F-word you may be thinking! 

Fabulous. Fantastic.  Fun.   

These are the words Matthew likes to use when he wishes his email and texting friends a “Happy Happy Fantabulous and Funny Friday”.  He even has shirts about Friday, his favorite day. 

Matty in one of his favorite Friday shirts!

Matthew’s love of Friday all started when he became interested in garbage trucks back in 
1^st grade.  Yes, Fantastic Friday is our garbage day.  He would sing the reasons why Friday was his favorite day and we came up with a long list of more than 20 reasons why Fridays are so fabulous.  We had to write all these reasons down so we wouldn’t forget them.  (Pizza day, garbage day, Mrs. Strickland’s garbage day to name a few).

Has Matthew found the essence of practicing gratitude?   Yes, I believe he has.
He’s been making lists of what he likes about each day of the week for years, which translates into what he is grateful for.  “Mommy, Happy Happy Terrific Tuesday,” he blurted out this morning as he woke me up.  Although it’s an early wake up call each morning, he does begin my days with a smile since he is so positive as he lists all the things he is looking forward to during his upcoming day. 

Now, of course there are times when autism and intellectual disability get in the way of his joyful attitude towards the days of the week and his gratitude lists.  “Mommy, I
want to skip Thankful Thursday and go straight to Fun Friday,” he tells me most
Wonderful Wednesday evenings when I am putting him to bed.  Waiting that one extra day to get to garbage day is just too long to wait.  Some Thursdays become Thrashing and Thunderous in our house because it’s in the way of getting to Fun Friday.  It’s really hard to live with Matthew when he gets stuck in this cycle of thinking.

As a mom who must practice “extreme parenting” because of Matthew’s special needs (thank you Suzanne B. for coining this phrase), I know I try my hardest to make the world a friendly and tolerable place for Matthew to live.  I want to make it possible to prevent him from getting stuck in his thinking patterns. 

o   Restaurant too loud?  Let’s go outside for a walk. 
o   Line for airport security a mile long?  Put Matthew in a wheelchair to bypass the line.**    
o   School van is supposed to come at 8:11 and now it’s 8:13?  I use my improvisational    
     skills as I spontaneously sing lyrics to him, which include reasons why the van driver is  
     late (like most individuals with autism, Matthew responds quickly and positively to music). 
o   Unfortunately, I do not have the ability to take Thursday off the calendar.    
     Sorry, Matty.  You’ll live.

A friend recommended a great book a few years ago about how to teach gratitude to kids (Raising Happiness).  One of the tips I took away from this book, is to pause throughout the day to let my children know when I have stopped to become mindful in the moment by saying something like, “tonight, when I lie in bed and think about my day, I will remember this moment with you as one of my favorite moments.”  The hope here is to teach kids how to savor moments and practice gratitude.  I love this lesson. 

One of the ways autism presents itself in Matthew, is his need for people to say certain things at specific times (yes, part of the stuck thinking).  After Greg takes a shower, Matthew always asks, “How was your shower, Daddy?”   Greg’s response has to be, “Refreshing.”  Matthew has gained a keen sense for when I am going to talk to him about savoring the moment.  Usually, just as I am about to say it, he will ask, “Mommy, are you going to think about this moment tonight when you go to bed?”  His autism makes him rigid, yet it helps him (and me) to remember to savor moments and practice gratitude. 

Yes, there are many difficult moments when I am just so F^<&ing exhausted of trying to figure it out.  Trying to figure out how he thinks so I can help him.  In these moments, I often do use my true favorite F word (under my breath of course)! 

Recently, in Matthew’s daily emails and texts to his family and friends, he has asked for a list of favorite W words on Wednesday or M words on Monday, and of course, F words on Friday (see example below).    When he requests the list of F words, I think he is trying to expand on his repertoire of alliteration for the days of the week, but I am going to allow his request for F words to remind me to make a mental list of what I am grateful for.  

One of his texting BFF's, Molly D. thank you for allowing me to post this great email you sent! (And thank you to SO MANY family and friends for keeping Matty occupied & happy with your daily emails and texts.)

Happy Happy almost Fun, Fabulous, Freaky Friday – from Matthew and me!

**Regarding my mention of using a wheelchair in the airport.  I will expand on that in a future post.

OPEN!

“Open, Open!!”  This is what Matty shouts each week when he waits for the All Waste Garbage Truck to come and take our trash away.  He wants the tops of the cans to be left open by the arm of the truck.  I don’t know why – it’s one of his “things”.  You can hear him shouting with great excitement, “Open! Open on the grass!” as if he were routing for his favorite football team.  Nope, it’s not football, it’s a garbage can.    

(Here is a 6 second video so you can truly appreciate his excitement - with his happy hops!)

Even when he holds the iPad to watch garbage truck videos on YouTube with his headphones on, we hear him yelling “OPEN, OPEN!” to the trucks in the videos.  (Yes, people do post 15 minute-long videos of garbage trucks picking up garbage cans, and for this I am extremely grateful).

Occasionally, he earns the prize of following the garbage truck on what we call a “garbage car ride” (after great behavior reports from school for a week).  

Sometimes, this makes make me feel like I am missing out – other parents are enjoying shared interests with their children.  They are laughing together at the movie theater or enjoying a sporting event together.  On rainy weekend afternoons, they are relaxing at home putting a jigsaw puzzle together or playing XBOX.   Not us.  Greg and I are taking turns driving around looking for the garbage truck with Matty.

“Just for me, Mommy, he left it open just for me?” I hear Matty ask from the backseat as I drive behind the garbage truck – all the drivers know Matty by name and wave at him when they turn around in cul-de-sacs.   He is practically hanging out my car window greeting the truck drivers.  

“Yes, Matty, he did leave it open just for you.” I respond.  Really, it’s just the force of how quickly the can is dropped, I think, but I can’t tell him that!

“I guess he is in an open mood, Mommy.”  Matty is a great conversationalist.

This truck is doing it right by Matty's standards - putting this can down with the top OPEN.

This is how excited he gets when we actually find the Garbage Man so we can watch the truck pick up a neighborhood’s worth of cans. 

Somehow, Matty’s pure excitement for finding and watching the garbage truck has rubbed off on me.   No, I am not watching youTube videos about garbage in my spare time or yelling “OPEN”.  But his excitement has helped me to see things differently. 

Being Matthew’s mom has opened my mind to a whole new way of thinking.  In my PPL (Pre-Parenting Life), I had such a narrow view of how the world works.   Going through life now, with Matty by my side, my eyes have been opened to new ways of thinking, teaching and understanding the world each day.

The recycling truck driver who drives the garbage route in our neighborhood clearly understands how important open cans are to Matty.  He will lift our cans extra times, give them an “extra shake” till the can is deposited on the ground with the top open.  Yup, just for Matty. 

So, Matty, thank you for opening my heart, my thoughts and my mind.