Wednesday, October 10

Scouting for sanity

We are settled into school routines, Hannah at the University (her dorm and roommate are so cute), Nate full time at Running Start, and the twins as active little kindergarteners.  Go ahead and laugh about the difference between helping my oldest two on college level math and then helping my littles on coloring "only THREE ladybugs" on the page.  I know you are laughing with me, right?

All the after school activities are in full gear.  One of the sweetest activities is the Awana church program that Liam attends at a neighboring church.  It's only his second year but already he is accomplishing tasks within their program.  Earning "badges" for his Awana vest.  Patches that show his accomplishments.  Colorful and bright and slightly coveted by him.  Badges that are symbols of his skills and his knowledge.

So I got to thinking....
What would it be like if "parenting children with special needs" had a scout program? Brimming full of badges.  And we wore some type of silly sashes or vests with all of our colorful patches on it?  Our skills and knowledge would be sitting ontop our puffy little chests with pride.  Goofy huh?

Maybe the "scouting for special needs" badges would include a beautiful red heart shaped badge because so often as parents we wear our hearts on our sleeves, get a lil emotional at times, convey our thoughts with the most passion and belief possible.   After all, some of us have watched our children almost die.  A few times.  And a few people reading this have lost their child.

There would be hands on activities in our "scouting for special needs".  Similar to how I image boy scouts have "how to build a fire" on their week long campout.  Ours though would include a hands on lesson for how to change a five year old boy's poppy diaper.  While he decides that all 42 pounds of himself needs to be in the next room.  At the exact moment that you remove his diaper.  And he runs.

Or for some friends it would be cleaning a trach on their child that has. the. most. amazing. defensive. moves.  Like karate kid on fire while you are trying to clean it.

Or maybe for another child's parents it would be a hands on activity like oxygen tank wrangling.  I'm sure a badge with a cute rodeo illustration of a mom wrangling an oxygen tank up the front house stairs and over a few toys would be great.

And let's not forget the "replace the feeding tube, in the dark, alongside I5, while a state trooper tries to 'help' you" activity.  That poor trooper was a wee bit traumatized, thought I would get the 'first responder' badge after she nearly passed out.

We could even have a week long "scouting for special needs" camp.  Which of course would take place in a hospital.  80 miles away from your family and friends.  Fairly isolated.  With just your sweet struggling ill child, yourself, a half couch to "sleep" on, and your hair looks so greasy for many of those days, you resemble yourself back in middle school.  The camp would take place during the week of Christmas.  Maybe a cheery colored badge with a tree on it?

Maybe we could have a fee structure for our "scouting for special needs" program that is so complicated it involves insurance companies, personal excel worksheets to track explanations of benefits, nonsense limits on activities that are much needed, waitlists to get into activities and use your entire savings.  A few times over. This badge might have a dollar sign and a telephone on it.  Because on the phone about insurance or care coordination will happen, often, in this program.

I'm not sure if boy/girl scouts has a foreign language badge, but I'm here to tell you "scouting for special needs" would have one.  And the test for your understanding of that foreign language would happen on day one.  With no textbooks to read and memorize the definitions of the words.  Only your presence at grand rounds, sleep deprived, when your child has been admitted, and everything is verbal and the doctors think you understand.  It is all latin.  Or greek.  It's the "medical" foreign language. 

And of course you wouldn't receive your "scouting for special needs" badges unless you enjoyed a lot of humor.  Sometimes fairly dark humor like in this post.  Sometimes a lot lighter though and very fun.  Best when your husband pranks your child's physician, as he is about to discharge your sweet baby and has come to your hospital room only to check for bloating and distended tummy (which is totally flat and our bags are literally already in the car after three weeks of being inpatient), your sweet hubby stuffs something under your child's gown so his tummy looks realistically bloated.  And your doctor laughs so hard when he figures out is a joke.  And five years later sees you in a lobby at Children's and asks where your crazy husband is.  And laughs again.  Just keep it real.  And fun.  Because we know and have seen, life is fragile and oh so very short.

Humor is best also when shared with friends and family and thru some amazing support groups like Whatcom Center for Early Learning playgroups, Parent to Parent support meetings, Arc of Whatcom County and Down syndrome outreach events.  Support in getting to know other parents.  And realize it's totally okay to use your humor and laugh about the most painful experiences. 

In the end of "scouting for special needs" the program would graduate you. 
But it is you that has gotten so much more from parenting a child with special needs.
More character.
Compassion that makes you ache.
Enjoyment of every single moment.
A need for large volumes of coffee.
An ability to be present, in the moment, in a split second.
An ability to cry like you have never seen a person cry before.
Honesty.  And it bears repeating, honesty with yourself and to others.
Forgiveness. Period.   
Love for your family that is so intense.
An absolute faith.  That is so freeing. 
A unique ability to fall asleep, when given a pillow and a blanket. Or one or the other. Anywhere.
Profound Joy
That you want to share your child with the world.

Tommy Adventures