The Spaghetti Hat Lesson

We just got home from Matthew’s “Spaghetti Hat” appointment.  His neurologist taught us this term, Spaghetti Hat, as a euphemism for EEG many years ago when Matthew first began annual EEG’s for his epilepsy diagnosis.  Spaghetti Hat, or an EEG appointment for Matthew translates to a two-night hospital stay.  We are stuck in one small hospital room, one bed, with 23 electrodes glued to his head.  This is considered routine testing for individuals who have epilepsy. 

Spaghetti Hat - the 23 electrodes glued to Matthew's head.

The EEG is monitoring seizure activity, and determining the need for more or less medication. I find it fascinating that these 23 electrodes glued to his head can look inside Matthew’s brain.  I think I have always wanted a glimpse into that beautiful brain of his.  What is it like to be Matthew?  During the 48 hours hanging out with Matthew in the small hospital room, I found myself gazing at the EEG monitor, wishing I knew what the lines meant – wishing I knew what he was thinking.  Would it be easier for me to understand him if I knew what it was like to be him?  Just for one moment…

The EEG monitor that I gaze at - wishing I could translate the lines.

For Matthew, who also has autism and ADHD, staying in one spot for 48 hours necessitates some magic on my part.  I’ve learned to ask for help along the way.  The night before his intended hospital stay earlier this week, I sent an email to over 100 family members, friends, relatives, teachers, camp counselors and neighbors – all people who have touched Matthew’s life.  I asked them to please support Matthew during his time in the hospital by sending him emails and texts, including pictures and videos of his favorite things. 

Within the first hour of being in the hospital, Matthew’s iPad indicated that he had 53 unread messages.  53 friends and family had already reached out with messages of support including photos of their breakfast, pets doing tricks, videos of original songs (thanks, Mari), classrooms full of kids wishing him well, and videos of the garbage truck collecting garbage.  Later in the day there would be more support from family and friends with messages containing pictures and videos of trains, UPS trucks, morning announcements at his former elementary school, trampoline and pogo stick jumping videos, friends taking the garbage out by motorcycle and by roller blades, and friends showing him what they were having for lunch or dinner.  There were so many messages, we didn’t even have a chance to view them all yet!  Thanks to the amazing support of family and friends, the magic was happening.  Matthew stayed in bed (only getting up to use the bathroom) for the duration of the test.

53 messages of support already!  So grateful!

This morning, during our final hours at the hospital, Matthew discovered that he could push the “nurse call” button.  Matthew is a cause and effect kind of guy, so pushing this button gave him so much joy since a friendly nurse would appear at the door each time he pushed it.  After three or four false alarms, I told the nurses to stop coming.  I was trying to pack up our belongings as we were being discharged shortly.  Matty is an expert button pusher and knew when I was distracted just enough with my packing to attempt pushing the button again. When several nurses arrived at our room all at once, the whole crowd of them with concerned looks on their faces and out of breath – they told me Matthew had located the higher level “emergency” button.  Maybe that’s why they let us out early?  *

Matty, listening to a message on his iPad while trying to grab the nurse call button wire from me!

Although I am unable to decode the EEG monitor screen, or see inside Matthew’s thoughts, I imagine that maybe Matthew and I think alike after all.  I pushed my own emergency call button when I clicked send on my email request to friends and family asking for support during our two-day hospital stay.  I am usually the one answering the call for help, so it felt so supportive for me to ask for help and receive it.  Matthew and I both recognize that the support of family and friends is a basic need to make it through our more challenging days successfully.  We both have learned when to ask for help.  Next time you are considering asking for help, think of Matthew, accepting the help of others and allowing this support to contribute to his positive attitude towards life.

Matty with his huge smile - even with the spaghetti hat wrapped like a mummy on his head!

*special thanks to the Nurses, Child Life Specialists, EEG Technicians, Residents, Nurse Aides, and the Music Therapist at the Pediatric Unit of Winthrop University Hospital, who took such good care of Matthew.

Matty and Flo - the greatest EEG Tech!

**Please consider supporting www.MatthewFetzerFoundation.org an organization that supported Matthew during his stay, by bringing him a new stuffed animal for being so strong and brave.  This reminds me of all the families who have hospital stays much longer than ours and for much more serious medical conditions than Matthew. 

Back to School Flashback

On a hot morning in late August, my kids and I piled into the car all excited to meet Matthew’s Kindergarten teachers on the day before school started.  It was Kindergarten Orientation or “Meet the Teacher Day”. 

Matty on his first day of Kindergarten,  2010

Five minutes later, we pulled into the school parking lot, and it felt the wind was knocked out of me. Why do I always forget that there is a world out there full of typically developing peers Matthew’s age, who can do all the things that he can’t do?   I watched as the two young boys in the car next to mine opened their own car doors, got out of the car independently, and stood still as they waited for their mom to tell them they could safely walk over to her.  My mouth dropped open.  Would that ever happen for us?

I had my brief moment of heart ache as I watched all the smiling and showered moms with their obedient kids in tow, easily walking into the school.   My walk into the school would be less care free.  Walking anywhere with a child who has autism is stressful.  Will he dart into the parking lot?  Will he grab for a child’s baseball hat in passing?  Will he pull his pants down to check if his underpants are wet?  I was determined to wear a smile, too. 

I took a deep breath as I gathered the strength and energy it would take my sleep deprived and un-showered self to unbuckle both of my kids from their car seats, hold their hands tightly through the parking lot, and enter the school.  Have you ever held the hand of a child with hypotonia?  (That is the medical term for low muscle tone – many children with autism also have hypotonia).  For Matthew, it’s a limp hand that belongs to an uncooperative body.   His body doesn’t move at the same speed or in the same direction as I’m attempting to guide him.   Why did it look so easy for those other moms?  We weren’t halfway to the school door yet and I was exhausted.   This was several years ago and I hadn’t grown my thicker skin yet.  Whenever I was faced with observing what same aged peers were able to do, and in turn what their parents had the freedom to do, I was frozen, numb.

Holding Matty's limp hand...hypotonia.

Yes, my motherhood journey is less care free and more exhausting than many other mothers I know.  I am holding a limp hand – a hand that needs constant supervision and support.  I am still learning how to guide that limp hand, and like most moms will admit, some days I do it with confidence, and other days with uncertainty

This year, six years after the Kindergarten orientation, Matthew entered 6^th grade in a new school and a new town.  Of course, we went to meet the teacher day (here it is called the “Meet and Greet”).  He is in a very small class for students with disabilities who require the most support in the school.  Matthew was excited to meet his teachers, and when I parked the car, he opened the car door safely on his own.**  I wore my thicker skin – the skin of experience. I was showered and well rested.  I didn’t worry about him pulling his pants down or grabbing another student’s hat in the hallway.  We met his teachers and support staff - he may have even charmed them. I breathed deeply.  I am finally done comparing what peers can do that Matthew can’t do.  Sure, other 6^th grade boys were going to play football or soccer after the meet and greet.  Many peers his age were planning to walk into town to get ice cream or a snack with their friends. I am more focused on what Matthew CAN do.  He can make me smile and feel so loved with his giant hugs. He is polite and loves to meet new people.  He smiles and jumps for joy at the smallest moments.   I’ll take hold of that limp hand and continue down the less care free and more exhausting road that Matthew has led me on for 12 years now.  He is my daily reminder of what is really important in life – human connection and celebrating the small joys each day.  

We are on this journey together - for that I am so grateful.

** I do still keep Matthew’s car door on “child lock” in the backseat, and he does still have to hold my hand in parking lots.  But, now that his younger sister is allowed to sit in the front seat, once in a while on very special occasions, I allow him to earn sitting in the front.  Of course I hold both of his hands in my right hand as I drive with my left hand…just in case! He is quick!

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.