Monday, August 28, 2017

Won't You Please, Please Help Me?

Somewhere along my parenting journey, I began to (mistakenly) equate my success as a mother with my ability to do things with my kids by myself – without any help.

This is a dangerous way to think when you have a child with disabilities.  We need a lot of help.  So much help - sometimes we forget that other parents can do things on their own with their kids.  And when we witness those moments, it’s a heavy reminder of how different our lives really are.     

I really shouldn't compare my parenting challenges to parents who aren’t raising children with disabilities.  It’s just not fair to do.   But - I am human and I forget.  And I compare.

I clearly remember a moment when I began making these unfair comparisons.   My kids were two and four at the time.  We were at the library for a summer reading program with our sitter, Heather.

Heather and Kathryn
While Heather chased Matthew around the children’s section of the library, I sat  with Kathryn listening to the librarian read and act out a story to a group of preschoolers. Heather and I took turns on “Matty duty”.  We created a seamless system covering the kids’ needs that worked for us. I needed Heather’s help.  Honestly, I couldn’t leave the house without her.
Heather and Matty 2007

As the librarian finished her story, I overheard a mom of four kids all under the age of six tell another mom, “I’m trying to decide if I should take the kids to the mall or to the pool from here.” 

Wait – what?  With your four kids? By yourself?  What are you talking about?  How do you shop with four kids? Or watch them 
at the pool by yourself?  I barely made it to the library today with two kids -  and I have help.  

Another mom in this conversation replied, “Meet us at the pool, we are heading straight there after this.”

I told myself there is no way that I heard them correctly.  I looked at these women as if they might know the secret of how to be successful moms.   I impulsively asked, “Wait, do you mean you are taking your kids by yourselves to the pool?”   Immediately I wish I hadn’t asked. I already knew the answer.

The mom of four said, “Yes, the big ones are easy - they listen to me. The little ones will just follow what the big ones do.”  Short pause and then, “do you want to meet us at the pool?” 

My mouth was hanging open in shock and wonder. Instantly I became aware that we lived in totally different parenting worlds.  She made it sound so effortless.  Was her life as a mom really that easy?  The familiar wave of grief for the motherhood experience I’d imagined for myself traveled through my insides.

I knew I had to respond to the pool invitation before my voice would start to crack with emotion, “not today, thanks anyway.”  I began to think of myself as an inadequate mom because I couldn’t take my two children anywhere by myself. I always needed help.

For Matthew (and I imagine that most parents of children with disabilities will agree with me),  one-on-one supervision is required.  ALL. THE. TIME.    Not just because there is a pool involved and he might fall in, but because he has no impulse control.  I am quick on my feet, but I can’t always guess his next move.  If he walks by people eating at an outdoor cafĂ©, he might grab a delicious looking French fry off their plates.  If he stands next to the buttons inside the elevator, he will definitely push them all - including the emergency call button. Is the stove on?  He will touch the hot pot with boiling water in it, guaranteed.  I’ve learned over the years to position my body in defense mode – placing myself between Matthew and that stranger’s plate of fries, or the elevator buttons, or the stove.  It is draining.  I can't shower if he is home (unless he's asleep).  When he impulsively runs out the front door to see a car drive by, I need to be right there next to him to stop him from running into the street. Even now at age 13.  I need help.

Soon after that day at the library, I started inventing outings that I could successfully accomplish alone with the kids.  I needed to feel successful as a mom.  We went to the Dunkin Donuts drive through (instant success when no one has to get out of the car and everyone gets a treat).  We went to the local Gluten Free Bakery where Dee, the thoughtful and understanding owner would walk us out to our car when we had finished choosing and purchasing our goodies.  Partly because she loves kids and partly to help make sure I got my kids back in their car seats (she knew I needed help – thank you, Dee).

As kids grow up, most parents notice that they need less help.  Not me.  I need more help.  This is hard to swallow. But part of my reality.  

Today, most of my friends’ kids are at the ages where they can begin to stay home alone. My friends are sharing their excitement that they no longer need to hire sitters when they go out for an evening because their kids are old enough to watch themselves.  Or the big kids watch the little ones.  If I equate parenting success with not having to hire help, I will be a failure forever.

It’s time for a new mindset.  Success as a mom is asking for help and receiving it. No matter how hard it is to ask. No matter how painful it is to watch other moms do the things with their kids that I imagined I’d be able to do with my children.  Success as a mom is asking for help, allowing it to happen, accepting the help gracefully and appreciating the support given.  

** Thank you to all the family members, grandparents, cousins, babysitters, lifeguards, teachers, neighbors, community members, colleagues, coaches and friends who have supported me with the gift of help over the years.  Your presence and support along this journey have brought comfort and encouragement -even on the most challenging days. **

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 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.