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!