Pages

Saturday, March 23, 2013

What's it like?

Last week I spoke with a group of high school students.  Half of the class is special needs students, the other half are regular education.  This class provides gifts and experiences that all the students benefit from.  I have presented to this type of class in the past, and one question always comes up:

What is it like to be a parent of a special needs child?

After years of answering "Difficult, rewarding, trying, and sometimes painful"  I've created a new answer that I gave to the classroom of eager listeners last week.  I've tweaked it considerably and will probably have to read my answer in the future...but here goes...

Imagine your living room without any furniture.  On the floor is a million puzzle pieces.

You know you need to put that puzzle together as quickly as possible because every minute the picture on the puzzle pieces change. 

In one doorway are all your friends and family.  You hear cheers and words of encouragement:

"I don't know how you do it- I could never put that puzzle together."
"You are so awesome with puzzles!"
"It is so impressive to watch you work those pieces."

In the other doorway, another group watches your every move, commenting with hushed voices:

"That puzzle is too hard for her."
"I don't know why she's even trying; she'll never get it all done!"
"Puzzles like that shouldn't even be in stores."

After a while, you get some of the edges put together.  You finally feel like you have something to work with but now....

The puzzle pieces change shape every 5 minutes!

You feel pressured to put the puzzle together, quickly, and correctly.  You can't cheat because the pieces only go a certain way.

As your knees start to hurt and your back begins to ache- you start turning to the experts outside the window...

"Do you know how to slow down the picture changes?"
"Have you ever seen a puzzle like this before, are there any tricks to help me?"
"How do I stop the shapes from changing!?"

The experts shrug their shoulders and can only offer basic tips...

"Each puzzle is different, but you're making progress, keep going!"
"Maybe if the lighting was better you would have better results?"
"Have you had your eyes checked?  Where are your glasses?"

You feel all alone- on your hands and knees- struggling to make sense of the whole stupid puzzle.  Time slips away and you become focused on a single piece.  Obsessed with making that one piece fit somewhere!!

If you don't finish the stupid puzzle- you will never be able to use the living room again!  It is the one room of the house that everyone else gets to use whenever they want- because THEY DON'T HAVE A STUPID PUZZLE SPREAD ALL OVER THE FLOOR!!!!  You can't walk around the room without stepping on the puzzle.  The puzzle can't be moved because the pieces will fall apart!

The self pity, uncertainty, frustration and anger makes you start to cry.  Finally, you sit back on your feet for a short break.  The puzzle is consuming you.

As you look around the room you realize that you aren't the only one working on this puzzle.   Your friends have started on another corner, your family is searching for pieces that have almost slid under the rug, a teacher is holding up each box cover for reference as the pictures change and the experts are bringing your reading glasses and showing you examples of other people who have put similar puzzles together.

You stand up, stretch you back, creaking and cracking from toes to eyeballs.  You  thank everyone for their help. The negative comments turn into whisperers.  They can’t compete with the happy chatter in the living room as everyone else works on the puzzle.  In a moment of clarity, you decided to escort them out onto the street.  You calmly explain to them:

"If you can't or won't help us- you need to get out.  I only have room for my puzzle and anyone who will help."   

In time, you see more and more of the pieces fitting together.  A confidence and contentment fills your soul.  If the puzzle is never completely finished or perfect you decide you can live with it.

Everyone agrees that furniture can be moved if there is ever enough space. We can live with the puzzle on the floor.  We still have the kitchen, the backyard, the bedrooms and the bath.  It is more important that you have now realized that is isn't only your puzzle...

No one should do a puzzle alone.  Just be sure the people on the floor want to put the puzzle together too!

Wednesday, March 20, 2013

Random thoughts on a random day...

Grandma starts chemo next week- finally!  After weeks of scrambling between doctors, trying to balance my family, implementing new behavior plans, and other stupid crap- I have been spending a quiet morning with my favorite coffee mug- (trying to resist the urge to add some Bailey's Irish Cream). 

I'm processing the last few weeks and making lists. I realized that I have the most random list of thoughts going through my brain today...let me give you a glimpse into my noggin:

I need to do FAFSA for both Mike and Kelsey this week.  (This woke me up at 3am one morning scrambling for a calendar to confirm to due date- April 1st in our state)

Get a reasonable explanation ready for when Grandma loses her hair at the end of the month.  Andy isn't going to fall for Grandma's wig.  He's going to ask A LOT of questions.

The new washable potty pads I bought aren't indestructible (in spite of the package's claim).  2 puppies destroyed it in less than 20 minutes.  I have 2 left.  I now put them away when I leave.  The puppies piddle on the floor when I'm gone...completely against the reason I bought them in the first place!

The roundabout on Evergreen really should have a sign for winter road conditions. In spite of new tires, 15 mph on glare ice will still allow you to slide sideways into a snow bank.  Lesson learned- only one witness, got out of the snow without calling AAA.

I have seen my mother-in-law's boob way to many times.  Cancer still sucks.

Phoebe, my grand fish, died last week.  I wish Kelsey had not done a porcelain burial; it would have been nice to bury her out by the maple tree.  Is it weird to order a garden plaque for a beta fish?

We got a new dishwasher on Saturday.  I over estimated how many times John would say "That $90 install fee is looking pretty good right now."  He only said it 7 times, I guessed 22 times.  I under estimated the number of trips to the hardware store.  I guessed one trip, we actually made 2 trips.

I need a cleaning lady.  I'm hoping she accepts grateful tears of joy for payment.

Sitting in the backseat of my car allows one to feel every fish tale slide on the highway.  Realizing your husband still has the cruise control on and his foot over the gas pedal (and not the brake) is grounds for a nervous breakdown.  Being referred to as a backseat driver for moaning when the car slides like a carnival ride- is grounds for divorce! 

March Madness is my least favorite time of the year.  Mike has no less than 2 blow ups a season over losses.  One would think he had a million dollars riding on a single game.

One of my puppies doesn't weigh enough.  Apparently they can achieve enough height at the counter edge to pull out an iPad power cube from the wall plug.  I figure if I make them fat enough they won't get the vertical lift needed to cause such destruction.

I need to reconfigure the men's sock drawers in my house.  Andy only had one pair after I folded a full week's worth of laundry.  Thankfully, he has enough underwear.  When I checked John and Mike's drawers for socks, I could barely open each one because they were so full. 

After the Christmas Day fiasco- I almost swapped the boys pill boxes again.  Must be more vigilant- or perhaps it is time I actually wrote the boys names on the top of each box versus the bottom (which I apparently never look at!)

Those aren't nose prints on my front window- I call it puppy art!

I like winter.  No bugs to freak me out.  No pollen to make me miserable.  Fall is okay too- especially after the first freeze when the bugs and pollen go away.

What gets chewed up at 10am, will most like get puked onto my king sized, down filled comforter at 2:30am the next morning.

My girlfriends are the best. Without each and every one of them- my random thoughts would be occurring on the Psych ward.









Friday, March 15, 2013

Did you know on Duplex Row....?

We lived in a 3 bedroom, split level duplex for almost 11 years.   It had a 2 car garage which pointed directly towards the road in front of the house.  When you walked into the garage, you entered through a screen door onto a landing.  8 steps upstairs, 8 steps downstairs.   On warm summer days we left the back door open to the garage, and the patio door open off the kitchen.  It created a nice breeze when the air was moving.  

Coincidentally- it also turned the garage into a megaphone!!!

The entire neighborhood consisted of similar duplexes.  Identical houses sharing one common wall through the center of the building.  We fondly called it "Duplex row".  People moved in and out of the hood but occasionally we got a few that stuck around a few years.   Directly across the street from us was a similar duplex.  Our garage doors lined up to each other almost perfectly.  They also had windows into their kitchen that pointed towards our side of the street.

Dan and Jill moved in across the street about 2 years after us.   Her son was the same age as Andy. He was a wonderful, patient, and kind mentor for my boys.  Jill became a good friend, confidant, and sounding board.  We are still close although she moved a neighboring town many years ago.   She was the first person to mention that when our house was wide open and voices got loud, she could hear everything we were saying- across the street!

Apparently my neighborhood knew when it was bedtime, punishment was being doled out, and when the kids were just being loud and boisterous.  Once, Jill pointed out our architectural anomaly, I became much more aware of what was yelled, screamed, or called within our walls.

I cringe to think we once hollered things like:

Honestly John, I understand how some animals can eat their young!

Andy- get some clothes on- right now!

Seriously Michael, I don't see any blood so you can quit screaming!

I swear Kelsey, if  don't feed them, I won't either!
(referring to her fish)

Jill knew how my day was going before I even crawled over to her house with a cup of coffee.

After the megaphone discovery, we squabbled in whispers all summer long- unless the air conditioner was running- but you first had to be sure we weren't accidentally air conditioning the outside.  I learned to use that megaphone for good- versus evil.  I could stand at my back door, see Jill at her kitchen sink and simply call across the street..."Jill, are you busy?"  We never called each other on the phone.   

We tried to be 'the friendly house'.  We had 3 young children, the school bus stopped in our driveway, and I was a stay-at-home mom at the time.  After Jill moved, a young couple with 2 young boys moved in across the street mid-winter.  When spring finally arrived, we had a chance to meet them. They were surprised to discover we only had 3 children.  Each of my kids owned 2 winter jackets, snow pants, a menagerie of hats, scarves, boots and mittens.  The constant wardrobe changes made it hard for them to figure out exactly how many children were living there.   They stopped guessing at 6 kids.

I look back at those years on the North side with affection.  I long for the days when something broke and you called the landlord to come fix it.  I miss not worrying about impressing anyone- we were all in the same boat.  I miss that megaphone garage.  I miss my seeing my friend standing in that window.  She was my first cheerleader, my first confidant, my first friend to help me accept the autism. 

The new house has a 2 stall garage.  It points exactly between the houses across the street...I'm sure some physicist would tell me that our sounds now carry across the entire neighborhood...I can live with that shame.  I never use names when I yell anymore.  Gives me a level of deniability!

Wednesday, March 6, 2013

The Night I Let Him Live

Back in 2005 we flew down to Florida to witness my youngest sister-in-law get married to a wonderful man.  Flying a family of 5 (2 with disabilities) is never easy. Throw in weather, mechanical failures, and medication limits- and one never knows what to expect.  Listening to your husband when he tells you to leave your cell phone at home (because we didn't have nationwide coverage) is JUST PLAIN STUPID!

John, I and the kids were all flying out together at 7:30am that morning.  John's parents were leaving from the same airport around 10:00am the same day.  Fog was our first obstacle.  We were delayed long enough to greet Grandma and Grandpa at the airport and watch their plane take off.  Around 10:30 we were informed that our plane had mechanical trouble so we were all going to be bused 25 miles north to another airport.

Fine.

Now running 4 hours late, we arrive at the new airport and are told we have to split up on 2 different flights!  Okay.  John took our youngest (Mike) because he has the shortest attention span, and they would take the longer flight with one hop in Atlanta.  I took the oldest and middle because I was 'Super Mom', Andy was tougher to handle, and our flight left first.   

Kelsey, Andy and I boarded our plane with promises to meet up in the Panama City Airport.  John and Mike would have to wait about an hour for their flight also through Atlanta.  Our simple flight to Florida turned into a big delay  in Atlanta, a drop in Alabama and a late night cab ride 2 hours to our final destination in the Florida panhandle.

As the 3 of us sat in Atlanta, I was monitoring the flight boards.  I had just said to Kelsey: "Watch your father and brother come running though here.  Any second now, they are going to come around that corner all in a rush to catch that flight to Florida."

2 seconds later- my prophecy was fulfilled.  John and Mike came flying around the corner.  He took one look at the 3 of us and asked "What are you guys doing here?"

All 3 of us burst into tears. 

He apologized for making us cry but he only had a few seconds to talk.  I said "I don't know what time we were going to arrive, everything was messed up", and he said "Oh babe, I'm sorry.  We have to go...we'll miss our flight.  Call me when you know what is going on." 

And they were gone.

By the time I had a definite arrival time for Florida, it was well after supper time, Andy's meds had worn off, and I had no way to call the family to tell them where the heck we were or when to pick us up.

By the grace of God himself, I had to forethought to jot down John's sister's home phone number and shove it into my purse before we left Wisconsin.  Having never been in jail, I wasn't exactly sure how to make a collect phone call.  All I could remember was a very irritating commercial for 1-800-CALLATT.  A very nice lady helped connect my call to Florida.  I quickly told John's sister that they should expect us at Panama City Beach Airport sometime after 1am. 

Sadly, we didn't discuss the different time zones I had traveled through.  Jen and her groom were not sure if my 1am arrival accounted for those time zones (it did), so they sat at the airport from 11:30 until we arrived at 1:20am.  Keep in mind, they were getting married in less than 24 hours...but they let everyone else go to sleep and they waited for us at the airport.  Bless their hearts!!

Most people had been very kind and understanding of my situation. We took turns watching each other's luggage for food runs and bathroom breaks. We chatted amongst ourselves, and moaned about the delays and inconvenience. Andy was exhausted, out of medication, bored, and not interested in sitting still for more than 2 seconds at a time. I had bought him 2 Beanie Babies, a second coloring book, 2 meals from McDonald's and he was done!

There were about 18 of us trapped together that trip.  All trying to get to the same airport in Florida.  When we arrived in Dothan, Alabama- we still had a 2 hour drive South into Florida.  The van waiting to transport us only held 7 of us.  Some would have to wait another hour for a second vehicle.

Most people told me to put my kids into the first van; they could wait for the second vehicle.  I thanked them all for their patience and kindness.  I think I hugged a few of them.  I put Kelsey and Andy into the center seat of that van, and walked to the back to load our luggage.  When I returned to the side door, a strange man was sitting in MY seat.

That man wouldn't even look at me while my exhausted children tried to slide over to make room for me.  Andy is gently patting the space next to him say "It's okay Mumma, we'll make room for you.  Come on Mumma, we want to go see Aunt Jenny's wedding." 

I was dumbfounded.  He had to know that he was sitting next to my children.  Surely he had heard me apologize to one person or another for my poorly behaved, unmedicated, autistic son!!  What the heck was I going to do?  The van was full!  So I told my kids to get out and that we were going to have to wait another hour for the next vehicle to take us south. 

Suddenly, two sweet, kind, wonderful women that were sitting in the back of that van stood up and said "Take our seats.  Some people have no manners or common decency!"  (I'm still suprised she didn't clip that man in the back of the head as she exited.)

As I hugged them through tears and stifled sobs, they told me "Don't you worry about a thing honey.  We aren't in a rush, and you need to get those little ones to see their Aunt Jenny's wedding."

They told 'seat stealer guy' to move his ass to the back of the van and make room for me to sit with my children.  How that man moved without ever looking up from the ground is beyond me.  I was so shocked by the kindness these 2 women had shown me, I could only wipe my tears of gratitude  as I climbed into the van. 

I think I quietly cried and sniffed all 2 hours of the drive south.  I was tired, wired, stressed and never ever going to travel again!!  Kelsey and Andy snoozed like angels for most of the ride.

The bride and groom greeted us warmly at the airport.  They had been kicked out at midnight because the airport had closed up for the night.  They assured me that they had enjoyed their 2 hour wait outside the building, and not to give it another thought.

When we finally got to the hotel, John and Mike were sound asleep.  I tucked my two kids into bed, and finally joined John in our bedroom.  He was sleepy but managed to ask "How did it go?  What time is it?"

I sat straight up and said "It went horrible.  Everything was messed up.  Kelsey was extremely helpful and tolerant.  Andy was a beast.  His meds wore off before we even left Atlanta!"

And here is where I want credit for not killing John...

He rolls over in bed, opens one eye and says "Well you had all the medications in your purse- which you carried with you the whole time.  Why didn't you just give him another dose?!"

I sat out on the balcony for 2 more hours before the urge to kill was reduced to a level that only made me want to pull out his fingernails with my tweezers.

The rest of the trip was great. Mike and I got a flu bug, but he recovered overnight and never missed a beat.  I spent one whole day hugging the toilet and trying to wash bedding.  I still hear about the wonderful trip everyone took to Shell Island to see the dolphins that day. 

Jen and Alex are still happily married, I'll never stop thanking God for sending me those angels who got out of the van for me, and that collect phone call that lasted 2 minutes- $22.54!!!

We haven't traveled that far as a whole family since.  I'm not certain we ever will.