Tuesday, April 25, 2017

I Don't See No Wheelchair

“Excuse me,” I politely uttered to the TSA agent who was standing at the head of the mile-long security line at the airport.  She barely looked up but I knew she could see us standing there.  I felt Matthew’s limp hand in mine, and I was trying to not lose my grip on his hand or on my patience. I continued, “My son is not going to be able to wait in this line.  Can my husband and daughter wait in the line for our family, and when they get to the front, my son and I join them to go through security?”

“You gotta get in the line,” was the automatic and monotone reply.  She didn’t even look up.

I will use the D word, or the “A card” and get around this, I thought to myself.

“My son has a disability (D word) and is not able to wait in this line,” I explained calmly, although I was feeling anything but calm. 

“I don’t see no wheelchair,” was the TSA agent’s blunt reply.

Oh, so now I have to provide disability awareness, I thought as my heartbeat quickened.

“He doesn’t have a physical disability, he has autism (the “A card”), which makes it impossible for him to stand in this line,” I was intensely aware of my shaky voice, my weakened patience and the lump in my throat.

“I don’t see no wheelchair,” she repeated. 

“He doesn’t have a physical disability.  He has autism.  He doesn’t need a wheelchair.” I repeated.    

“I don’t see no wheelchair,” it was like talking to a broken record.

“He doesn’t need a wheelchair.  He has an intellectual disability.  Not a physical disability.”  I had lost my grip on Matthew’s hand and on my patience for this conversation.

“I don’t see no wheelchair.”

My mouth opened, but nothing came out – and if I did muster up the courage needed to speak any more words, I knew those words would be accompanied by tears. Matthew was laying on the floor next to me, wailing, “Mommy? Mommy?” in his scared and uncertain voice.  He could sense that Mommy was losing this battle.

In my role as Matthew’s mom, I am constantly advocating for his rights while aiming to spread disability awareness. Sometimes this takes place at a school meeting while advocating for more time with the speech therapist or behavior analyst to meet his educational goals. Other times it’s disability awareness at the playground or the pool explaining to another child who is staring at him why Matthew is flapping with his whole body while watching the lifeguards change seats.  I encourage people to ask questions about Matthew and his autism.  I want to help others understand this misunderstood diagnosis as best I can.  Matthew is a great teacher for us all. He is a gift. 

This security line situation was similar to other experiences I’ve had as his advocate, yet somehow it felt more challenging.  Perhaps it was the eyes of the other passengers waiting in line that I felt on my back.  Or my awareness of the clock ticking as our boarding time quickly approached.

I knew I had to peel Matty off the airport floor, get his hands sanitized (he often puts them in his mouth), and figure out a way to bypass this line.  I was unsure of my next move.  That’s when I saw a stranger’s hand from the line beckoning me toward her.  As I got close enough, in a hushed tone, the older woman who had waved me over looked at me and said with the calm confidence of a master yoga teacher, “Honey, put him in a wheelchair.”   As simple as that. 

What? Put him in a wheelchair?  I silently repeated to myself.  A light bulb went off in my head and my next move became clear as I started walking to the ticket area to secure a wheelchair. As a special needs mom, I often can’t “see the light” or the solution to a small problem because I am too close to the situation and overly emotionally attached. 

I am forever grateful to this helpful stranger in the security line who instantly became one of my guides.  I imagine that she is a retired special educator, or perhaps a warrior mom herself.  She was in the right place at the right time to help me see the light.  Now, when we travel, I specify that a wheelchair will be necessary while purchasing the airline tickets months in advance.  Matthew is calm and relaxed once he sits in the chair, and we avoid the long lines at security.

I have an abundance of guides who have supported me along this journey so far. Guides can appear in the form of a kind stranger in the security line at the airport. Others have been special camp counselors, dedicated teachers, protective neighbors, family members and friends – new and old.   My most helpful guides have been other parents to a child with a disability who is just a little older than Matthew.

I trust that I will continue discovering my guides as Matthew gets older.  Once I appreciated the value of support that my first guides brought to me in the form of hope, community and empowerment, my intention has been to guide others who are on this road with children younger than Matthew. I know that I can shine a light for others the way the light has been shone for me.

P.S.  Yes, it was a brilliant moment of satisfaction when I returned to that same TSA agent - with Matthew IN a wheelchair.  

P.P.S. After many years, I have accepted that TSA agent as one of my guides.  I learned something from her, too.   

Friday, March 10, 2017

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. 

Monday, October 31, 2016

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 6th 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 6th 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!