A New Me

As a parent of a special needs child, I’ve become quirky.  That’s right.  I know the “ordinary” world probably thinks I have become a borderline “nut-job.”  And, guess what?  It doesn’t bother me.  There was a time I would have cared—Before Caden—my personal B.C. I’ve changed.  We all do; it is just that some people cannot comprehend my metamorphosis.  I try to find the balance between being the prince’s mom and a professional.  But, at some point, those different lives merge.  It happens to all of us.  So, I have decided to share some of those changes with you….

And the Emmy Goes To…Me.  I loved being on the stage when I was in high school.  The singing, acting, entertaining—it was something I enjoyed doing.  Now, I get to act constantly.  This phenomenon was brought to my attention by an arrogant professor who informed me he could tell what I was thinking by my facial expressions.  It turns out—he really could. And, I didn’t like him.  Nevertheless, facial expressions have become a huge part of my life.  My prince responds to them.  He sees disappointment—usually after he has knocked over something with a ball.  He sees happiness each time he verbalizes.  He responds to fear when he is about to do something unsafe. I use these expressions (and more) daily, so they are hard to turn off on command.

I act happy when I see other children doing things that my prince can’t.  Sure, I love my son.  But, I also wish he would talk, play sports, or care about school.  Finding happiness in other children’s success is difficult for me because of the sorrow that sometimes surrounds me.  And, you know what?  That’s ok!  It’s part of coping. You can even find books and articles on it.

The Spanish Inquisition has nothing on me. I first noticed this at Disney World.  I had scoured informational websites trying to find the best restaurants, resorts, and rides.  But, I still found myself asking a million questions to anyone working at the park. A sampling of these questions were:

“How dark is the ride?  Like dusky or pitch black?”

“How big of a drop is it?  Are you sure it is 4ft and not 8ft?  Like a playground slide?”

“How noisy will it be?  When you say ‘not too bad’ do you mean frat party or family picnic?”

“Do the lights dim?”

“Does the beef have onion in it? How much is not much?  We’ll take the chicken.”

Yawn.  I am physically, mentally, and emotionally tired 99.9% of the time. Now, the prince is afraid of his room.  Thanks, Monsters, Inc. and Monster’s University.  I thought he loved those movies, and he does.  But, now he stares at the closest with wide-eyes instead of sleeping.  I remember how much I enjoyed watching things that scared me.  Of course, I would have quivered under the covers instead of walking across the dark house to wake up my family.  I stress about the prince’s future.  I stress because he cannot express himself. I have typical stress.  Then, I find myself tossing and turning in bed which causes stress because I can’t sleep.  It’s a vicious cycle.

Suck it up, buttercup.  My patience runs thin—perhaps this is because I must have so much in my personal life.  This is something I do struggle with; in the organizational leadership business we call it compassion fatigue.  I struggle to remember that when someone says “this is the worst thing that has ever happened” when Johnny gets a “B” on a homework assignment—that it probably is the worst thing that has happened to that person.  Or, their child has the sniffles and they just don’t know what to do—I forget that their child probably hasn’t been passed off to strangers for surgery.  I have to remember other people have had different life experiences from mine.  However, I often find myself quoting a dear friend and asking myself, “Is this real?”

So there it is…

That’s the new me.  If you see me making faces while interrogating someone about the ingredients in a dish at a local restaurant—or worse—asleep in a plate of food, cut me some slack.  And don’t worry.  I will attempt to show compassion when someone tells me “this is the worst day of their life” when their fingernail polish smudges.  But, I will really think: “Buckle up.  It only gets worse.” That’s when I will discover I’ve come to work (yet again) with my shirt on inside out.

No Peace with the Prince’s Feet

I took a hiatus from writing.  Life happens.  I finished my degree, and writing was not high on my priority list after completing my dissertation.  But, writing is in my blood.  It’s how I cope with life’s unplanned events.

A few days ago, my grandmother, the prince, and I headed to the mountains for a brief stay.  My prince has always loved to travel; I started him early.  We are “on the go” people, and life didn’t stop when my little prince arrived.  He rolls his luggage, requests music from the back seat, and enjoys looking at the surroundings.

The traveling part is easy.  The hotel/spending the night part is more of a challenge.

I walked into our rented condo and stared out at the mountains. The view was tranquil.  Lights dotted the mountain before me.  A gigantic cross peaked out from the mist. Stress started melting away.  When I thought I had conquered a moment of stress-free bliss, a wet, stuffed snake’s tail hit me on the head.  There it was…my reality.

Sometimes, my prince causes me to have flashbacks to the movie Independence Day…you know the part where the aliens speak “No Peace” in a raspy voice. I should get that on a t-shirt.

Picture it.  You sit down after a long day at work to enjoy a Diet Coke and the latest episode of NCIS.  Your child is settled in the playroom with his favorite movie, a drink, and a stuffed snake; all of the things to make him happy. Something major just happened, and NCIS has its first freeze-frame showing Gibb’s stoic face.  Then, you feel the poking.  He wants a different movie.  He’s lost his ball behind the toy bins.  He isn’t happy with his drink.  This routine happens every 15 minutes with either you or the King.  No peace.

You are actually cooking dinner and enjoying it, because it happens so rarely.  From behind, you get bombarded by every ball the prince owns as if you are in a vicious game of dodge ball and didn’t know it.  No peace.

Why should I expect anything different on this trip? Our condo had two bedrooms.  One with a queen bed; one with a king bed.  I looked at the jacuzzi.  I looked at my huge bed.  And, I thought to myself in a Gollum voice, “The precious! My prince will surely want to spend time with his great-grandmother. This is all mine—mine I tell you!” The snake’s tail again brought me back to reality.  After having a child (an only child to be specific), is anything really yours anymore?  For those who have followed my blog, it’s no secret our little prince is an only child.  (Perhaps the “No Peace” motto is why.)  Nevertheless, being an only child has perks.  And, my little prince enjoys his slice of royalty.  In a hotel (or condo in this case), he calls dibs on the bed.  A fold out bed will work in a pinch, but you are crazy to think an air mattress will work when a bed is readily available.  Snoring is out.  If you snore, sleep on the balcony or prepare to be receive the evil eye all night. In his defense, he slept like an angel with his great-grandmother until 2am.  Then, he came to cause havoc on his mother for the duration of the trip (2.5 nights).

My king bed had a memory foam mattress, which heated up like a Crock Pot on a slow setting.  By morning, I was done.  And, the prince didn’t help.  He tossed.  He turned.  He would randomly kiss me when I was sound asleep.  By morning, I was hot and reduced to a mere corner of the king-sized bed.  Why?  Caden was laying perpendicular with his feet in my face. And, friends, wherever my prince takes his feet, rest assured, peace will not follow.  He pushed.  He kicked.  He flopped.  He wanted me to hold them.  He wanted me to stop holding them.  He wanted me to rub them.  He wanted me to stop rubbing them.  This went on for hours.  Meanwhile, my grandmother slept peacefully in the other room.  At 4am on the day of our departure, I marched the prince to my grandmother’s room and proclaimed, “Your turn. I need some sleep to drive us home.”  I stumbled back to the bed and laid down.  It was still hot.  I couldn’t hear a sound.  His feet weren’t in my face.  And, I missed him.

I can’t remember a peaceful life. I know I had one—I think I did.  I guess I wouldn’t trade those moments of no peace. I get frustrated.  I get tired.  I get overwhelmed.  But, I am one lucky mom.  I’ve learned to pick up those balls tossed at me while cooking and throw them back.  That moment of no peace brings immense laughter.  Switching DVDs is tiring at night.  But, we have a DVR.  I can pause anytime. Gibbs can wait a moment, because my mostly non-verbal prince has something important to say. The snake tails—I’m not a fan.  But, they do get my attention.  And, those feet—well, there’s never any peace with them.  But, those are the feet I played with when I held him as a baby.  Those feet have become strong.  He uses them to dance, run, jump, and frustrate me when sleeping with him.  He will go far with those sweet feet.  So, I will live with no peace for a while longer and continue to explore new lands with my little prince. Peace is very boring anyway.

Truly Special Olympics

Writing has taken a backseat to life lately.  When you work in a profession dominated with writing and are researching for a dissertation, writing for pleasure isn’t really pleasurable.  But, I couldn’t pass up the opportunity to share an experience that happened early in the month—the Kentucky State Special Olympics Games.  The event was refreshing.  Why?  For a few hours, I was surrounded by nothing but kind, competitive spirit and happiness.  It reminded me how much I enjoy being a part of this lifestyle, although it can be challenging at times.

As the mom of a special needs child who loves cultural anthropology and behavior analysis, I find myself perplexed by the competitive drive of some typical functioning children and their parents.  I guess I take after my dear father who was more fun-loving than competitive.  I hate participating in or watching competitions. I don’t discount their value, and I don’t buy into the logic that EVERYONE deserves a ribbon.  Darwin knew what he was talking about when he explained “survival of the fittest,” which applies even in competition.  In life, there are winners and losers. The tender-hearted side of me (yes, I have a heart) always feels bad for the loser.  Someone has to drop his or her head and run in from the field while the fireworks bang and confetti falls for someone else.  Someone has to polish their resume while someone else unpacks boxes in his or her new office. It’s simply life. 

But, the nature of the competition is what troubles me most.  Sure, we want our children to win, because we don’t want them to be disappointed from losing.  When I was a child, I remember hearing about a local mother (yes, the natural nurturer) being removed from her child’s little league game for disruptive behavior.  Disruptive behavior is so rampant at children’s competitive events that communities have started hanging signs to remind parents it’s only a game and to watch their language. I wonder if the next generation of parents at little league games will continue their parents’ behavior or sit quietly remembering the embarrassment. As parents we want our children to experience accolades, pats on the back… happiness. 

That’s what makes the Special Olympics so special.  Sure, there are winners.  You know it, because they proudly wear those medals while standing on the podium for pictures and recognition.  And, there are losers… but those are harder to recognize.  As I sat in the stands waiting for the prince and his dad to take their marks for his Young Athlete’s 15m dash, I watched the older athletes race on the track.  The athlete leading the pack had a stride of pride.  The entire crowd erupted in cheers as he passed the stands.  What makes that so special?  The crowd continued their eruption for every runner; every runner, even the one bringing up the rear, had a stride of pride and enormous smile. I was in awe.  These people were cheering for people on the “other side” and encouraging them to cross the finish line. 

That’s what is missing from typical competitions. We square off at district tournaments and other games.  My side sits here; you sit over there. I’ll “boo” your team’s every move, and you’ll “boo” my team.  If my team loses, I will talk about the terrible coaches on my team and how the referees were obviously your fans.  If my team wins, I will talk about our awesome coaches and players, how fair the referees were, and the terrible behavior of the sore losers.

While I hate competition, I can get caught up in the moment from time to time.  One night while watching a WKU basketball game on television, our opposing team scored with a terrific shot.  Caden clapped, jumped up and down, held his arms up, and cheered loudly.  A proud Hilltopper, I said, “Caden, that’s the wrong team.”  He looked at me, jumped up and down, and cheered some more.  He never leaves a WKU Volleyball game disappointed with the outcome.  A winner was crowned, but the loser was still applauded. 

We all need a little Special Olympics to remind us how we should behave—to remind us there should be just as much pride in finishing the race as standing on the podium.  We hope one day our child will stand on the podium, but we know he really wouldn’t enjoy standing still for a picture anyway.  His moment was during the race—and that’s why the games are the truly Special Olympics.

21 Simple Ways to Advocate For Your Child with DS

It’s World Down Syndrome Day.  Do you have on your mismatched socks showing support for community members with Down syndrome?  If not, that’s OK.  I am sure you show support or advocate in other ways.  Today, as bloggers for DS, we are encouraged to do something different.  Some would argue I haven’t made a blog post in so long that actually writing would be a change.  I’ve been busy enjoying the challenges and adventures of life!

On this special day, I’ve decided to talk about advocacy from a parent’s perspective—things we can do with little effort to make a difference.  First, let me say—we can’t change the world by ourselves.  I will admit—I don’t have the time, and I don’t have the emotional fortitude.  But, I recognize there are things I can do; there are things you can do.  So, you don’t want to blog?  Fine.  You can’t afford to adopt all the kids with DS in the world confined to orphanages?  Neither can I.  But, we can make a difference.  We can throw a tiny pebble into murky waters and watch the ripples.  In order of World Down Syndrome Day, here are 21 practical things we can do to advocate for our kids… and some of them, I bet, you are already doing.

  1. I have a dream my prince will learn to read.  I dislike the stereotype that children with special needs can’t learn to read.  So, we are working on sight words.  Simply working on reading skills and teaching my child the basics breaks the stereotype.
  2. Participate in a Buddy Walk.  It’s usually one day for a few hours and filled with networking opportunities.  I’ve read some people don’t like a day to say, “Hey, look at us.  We’re different.”  Try a new perspective, “Hey, look at us.  We belong here.”
  3. Join Girl Scouts or Boy Scouts.  We love Cub Scouts.  My prince can salute and loves being around the other boys.  What a great way to teach more people about his abilities!
  4. Get out in the community.  The best way to break down stereotypes is to show people our kids enjoy the same things their kids do.  If invited to a birthday party for a child in the regular education class, go.  Go to museums.  Go to ballgames.  Just go!
  5. Be a good model.  Kids, including our kids with special needs, listen and learn from us.  Teach appropriate behaviors and words through modeling.  Don’t use the R-Word.  Don’t teach that it is acceptable to curse, if you don’t want your child to do it. Act like you want your child to act.  Of course, there are exceptions; not ALL of our kids’ behaviors are modeled.  But, they do want to be like us—think about when they put on your shoes or clothes.  You are their model.  You are who they want to be.
  6. Get your facts straight.  You should not advocate with incorrect information.  Go to the library, talk with a support group, or find a national organization.  Don’t rely on media, and don’t trust everything you hear.  Keep in mind facts can be proved—opinions are just that.
  7. Complete an “About Me” book for your child.  Tell about your family, your child’s favorite items, preferred foods, etc.  Send the book to your child’s teachers.  They will appreciate it!  Here is a start: https://secure.kcdsg.org/files/content/All%20About%20Me%20Booklet.pdf.
  8. Don’t be afraid to answer simple questions.  Visit your child’s class and let the kids ask you the typical “Why??” questions.  They will advocate for your child for the rest of his or her educational career.
  9. Attend IEP meetings and include your child, if possible.  I can’t imagine someone planning a year of my life or my child’s life without my input.  I will know what is going on until he is old enough to tell me to, “Butt out.”  Then, I will probably continue to stick my nose in his business.  Oh well…
  10. Volunteer at your child’s school.  Be a presence.  Let people know that just because your child is in a special class, you both belong.  If PTA isn’t for you, volunteer in the library.  Be a room mother.  Just don’t smother your child.  Remember—school is his or her job.
  11. Be a guest speaker.  I know some people don’t like to speak in public.  That’s ok.  You can skip this one.  But, if you don’t mind, contact your local source of higher education.  Many of these organizations are turning out teachers.  Offer to tell your story and change their minds about our kids before they enter a classroom.
  12. Fundraise for the important causes.  Believe me, you can hit a fundraising limit!  So many great organizations need money or items.  Your coworkers, family members, etc. will get tired of your constant pleas for money.  So, pick one your child loves.  You might rotate the organization each year.  For us, we focus on therapeutic horseback riding because, that’s what my prince loves. 
  13. Get involved with social media.  You know those old friends from elementary, middle, or high school?  They may not know about your child.  Post pictures, tell stories, and change attitudes.
  14. Show you mean business.  When your child is going to school or work, make sure your child has the appropriate tools to complete the task.  Don’t say “I want my child to learn” and not send school supplies at the beginning of the year.  Or, “I want my child to learn to read, but I don’t have time to read books to him or her.”
  15. Talk to other parents of special needs kids.  Parents struggle when first hearing their child may have a special need.  Talk with them and serve as a source of encouragement and support.
  16. Buy a book for your child’s teacher.  Not just any book… add to her library on your child’s disability. 
  17. Send a coloring book about Down syndrome to the regular education teacher, your doctor’s office, the local library, etc. The following link is a great resource: http://www.dsamt.org/Repository/5/Document/coloring-book.pdf.
  18. Teach independence.  This one is tough but necessary.  We want our children to leave the nest, if possible.  We want others to know our children have potential to live independently, pursue higher education opportunities, work, etc.  Start early to encourage other family members to do the same.
  19. Be positive.  Being negative is a great way for people to feel sorry for you.  Share funny stories about your child with coworkers, church members, etc.  It helps them put your life in perspective.  Our lives are more than doctor’s appointments, IEP meetings, therapies, etc.  We have very happy, positive moments to share with others.
  20. Get on a legislative mailing list.  Here is the one for the National Down Syndrome Society:  http://capwiz.com/ndss/mlm/signup.  Tell your legislators, “good job” when positive legislation is passed.  Write them if you disagree with the legislation.  Fill your letter with personal examples and FACTS!  Have someone proofread it before mailing it off.
  21.  Finally… always continue to learn.  Attend workshops, research, read, etc.  The best advocates are current on terminology and are willing to explore strategies to help their children.  Don’t just rely on other parents.  Consult professionals.

 Happy Advocating and Happy World Down Syndrome Day!

Being Different is OK.

Several months ago, I stood in line at Wal-Mart behind two women who were attempting to pay for their groceries. The cashier was growing more frustrated by the minute because the ladies could not speak English.  Both were having trouble operating the credit card reader.  The ladies were attempting to help each other, which caused more frustration to exude from the cashier. You are supposed to talk loudly to those who don’t speak English, right?  Because, speaking English loudly will certainly break the communication barrier….

When it was my turn, the white, blonde cashier looked at me directly and said, “If you come here, you should learn to speak the language.” English, of course.  I smiled at her frustration, appearing to remain Switzerland.  However, I was far from that little country.  Geographically speaking, I was in Brazil.  My mental reaction was, “That’s what my people thought when you Englishmen arrived on our shores.” 

I’ve even heard those who say, “You should just ‘go home,’ if you don’t want to learn English.”  Interesting prospect, if you are an American Indian.  Given—I haven’t had the blood test to prove my Native American ancestry, but I have heard the stories passed down through generations from both sides of my family.  English was learned out of necessity, because the English were taking over the land.  Perhaps it is my twisted sense of humor that finds it laughable when I hear English referred to as the “native language,” when our country was full of tribes with different languages, symbols, and dialects long before English.  Oh well…

What I find most interesting is the intolerance continuously exhibited in the community.  We want people to be “normal.”  Whatever that is….

I suppose I became more aware of how so many people are afraid of “different” after I had my little prince.  Caden has a severe speech delay—a derivative of Down syndrome and a repaired hidden cleft palate.  Chances are folks will always have a difficult time understanding him, which, I believe, accounts for why he will rarely talk now. He has a communication device; he reserves his voice for home.  He is a smart little boy—perceptive, really.

Even more alarming is the abortion rate for those who are diagnosed with Down syndrome prenatally.  I’m not going to get into the abortion or an early screening debate here—because, I don’t believe either address the real issue—the fear of having “something” different from societal norms. They fear their child will speak differently, act differently, look differently….

I take pride in knowing so many parents of special needs children are so tolerant.  In parallel with immigrants who come to our great country, many of us have to learn a new language to survive (sign language, medical jargon, and educational terms).  We seek each other to build support networks.  We celebrate holidays that aren’t always found on the calendar like World Down Syndrome Day, etc.  We’ve been stared at by those who are not very compassionate as we try to communicate with our non-verbal or verbally limited children. 

I was reading an article the other day that talked about disability advocates who promoted inclusion in the educational system; they are now fighting for inclusion in the community.  At first thought, both concepts seem to mesh together.  Quinn (2013), the author of the article, said, “It makes people face the mirror, and face the contradiction between their professed universal values and how they’re actually implementing them on the ground.” We tout equality, but we want people to speak English or speak to be audibly legible.  We say that it’s OK to be different, as long as you’re normal. We pass laws emphasizing inclusion, but jobs for those with disabilities are hard to find.

But, I can proudly say that being different is OK.  I’m different.  My prince is different.  Those ladies at Wal-mart were different.   And, we are normal, because we’re redefining it.

Quinn, G. (2013) Disability rights. An important test for open society. Retrieved February 2, 2013 from http://www.opensocietyfoundations.org/voices/disability-rights-important-test-open-society.

Thank you, God, for Caden.

My thoughts are clouded with the remaining work I have toward finishing my terminal degree.  I’m not sure why it’s called a terminal degree—the truth is I will probably take more classes. Nevertheless, I thought I would take some time to write for my blog.

I’ve noticed something about Caden in the last four years.  He loves routines, and he loves God.  You know, “God” can be a difficult subject resulting in hoards of questions.  He isn’t a physical being, so you can’t see him.  Yet, Caden gets the concept with little explanation and without a picture.  He even points toward the Heavens when discussing God.  He bows his head to pray without reservation.  His first signed and spoken phrase was “God Loves Me.”  He loves holding the church hymnal.  He thoroughly enjoys singing about his joy down in his heart, his little light, rolling the Gospel Chariot, the plight of the wise and foolish man, or God making hippos.  I’ve even noticed that he listens during the sermon.  I know, because he grabs the hymnal as the minster is winding down.  He wants to talk in the microphone after church.  Church is an important part of his life.  He becomes disgruntled when we have guest speakers.  He likes the typical Sunday routine; he needs it to start his week.

Many of you, who’ve read previous posts, know that I vehemently deny God gives special needs children to parents who are deemed “worthy.”  There are too many children destined for institutions for me to believe that old story.  But, I don’t deny that God works through Caden.

Caden has forced me to have a greater appreciation for God’s creation.  He can spend hours watching squirrels, birds, rain showers, flowers, etc.  He takes all of it in—except big plants.  He’s not a fan of those.  Oh well.

Caden reminds me to praise God.  When I am busy folding laundry, writing, or cooking, he taps me on the shoulder and signs “build.”  That’s my cue to sing about the wise and foolish man.  Or, he sticks up one finger and spits on it.  That means, “Hit it, Maestro! Satan’s blowing out my little light.”

At dinner, he reminds me to pray.  After making sure he actually likes what I cooked, he pushes back his plate and folds his hands.  When we are finished, he nods his head in approval. If he doesn’t like the meal, he makes it abundantly clear.  He will not give thanks for what he is not about to receive.

He helps me see that God has a sense of humor.  I taught Caden all the signs for John 3:16 as part of a church Cub Scouts program.  I’m sure you’ve heard the verse.  It is about God loving the world so much that He gave his Son….whoever believes will have eternal life.  When I taught him the sign for “life,” Caden ran to the kitchen to get his cereal box—that’s right, he loves Life cereal.  I am sure Heaven will be filled with Life and Life—just for him.

He reminds me of his innocence.  Caden was on a rampage a few months ago, which resulted in two timeouts and frustrated parents.  After a few minutes, I told him he could get up from the timeout chair. He stood up, gave me a dirty look, and said, “God loves me best.”  And—I couldn’t argue with that.  He probably does. I just smiled—the frustration dwindling—and thought, “Thank you, God, for Caden.”

Snakes….Really?!

It was turnip green pickin’ weather—only I don’t remember the weather.  I just remember turnip greens in trash bags being soaked in large, galvanized tubs being prepped for cooking, bagging, and freezing.  I liked placing my hands in the water among the leaves and feeling the prickles and ruffles.  In between doing so, I would play on the back porch of my babysitters’ house while they worked diligently in their “mess” of greens.

Spoiled relentlessly, I would only ride my tricycle in the comforts of their covered back porch.  Good grief, who would want to get hot in the scorching sun? Not me.  My mind was overflowing with my imagination. I would park my trike to vegetable shop among the flurry of “green” production in their attached workshop.  The store owners (a.k.a. my babysitters) would eventually grow tired of me playing in the soaking greens and run me out.  I would ride on to the other end of the porch.

On this day, a worm caught my eye.  It was short, stubby and spotted—like a black and white cow.  At least, that is what I remember.  I parked my trike to get a closer look at the intruder who was invading my shaded space. 

I moved closer…

Closer…

And…

That worm stuck its tongue out at me. 

I was appalled.  The audacity!  Forgetting my trike, I stomped to the workshop and yelled in at Mr. and Mrs. Morgan.

“There is a strange worm out here!”  I yelled only to be greeted with “Go play; we are busy.” 

“The worm is being rude to me!” I yelled again.  I knew I was tattling on the worm, but he was being rude. I wouldn’t stand for it.  Again, I was told to go play.

I stomped my foot.  “He is sticking his tongue out at me.”  Both froze and turned slowly.  Mrs. Morgan said, “Kermit, perhaps you should check on this rude worm.”  He did.  And, the worm got the beating it deserved.  After the beating, I learning this rude worm was a snake.  Thus, my fear of snakes began. 

Bugs?  No problem.  I will catch or kill them for you.  Whichever.

Spiders?  No big deal.  I will kill them without flinching.

Snakes?  I will scream like a diva while making convulsing sounds and either freeze like a statue or do a ridiculous dance trying to scare it away.  I don’t even go into reptile houses at the zoo for fear of an earthquake.  I  mean I could get trapped with those things. In the aquarium, I close my eyes and walk quickly through the areas infested with them.  And, believe me, I know the areas.  I have closely studied the aquarium’s website and directory.  I don’t watch Animal Planet.  I use to have the channel blocked when I lived at home.

So, we flash forward 27 years.  I am now a mother of a rambunctious boy who, of course, loves snakes. He is fascinated with their colors, movements, and texture.  I get chills just thinking about it.

On Friday, his teacher sent me a text telling me his class was about to be visited by a 4ft python.  I almost dropped my phone.  She proceeded to send me pictures.  He posed for the camera with it draped around his shoulders and nestled peacefully in his lap.  I kept thinking of that little 4 inch snake that petrified me as a child, scarring me for life.  Now, Caden was making a 4ft friend. The thought was almost too much to bear. I shivered at my desk, but I had to look.  That’s what a mom does, right? 

At home, Caden parades around the house with two massive, stuffed snakes draped around him.  He likes to throw them at me.   At first, I would scream and tell him to stop.  He would stare at me with a look that said, “Mom, get a grip.  They are stuffed.”  Now, I just ignore the flying snakes.  He is right; they are stuffed.

I have grown in my ability to deal with Caden and his passion for reptiles.  To deal with Caden’s passion and God’s sense of humor, I have developed a set of rules:

  1.  I will look at Caden’s pictures where he is holding a reptile, but I will tell myself the reptile is fake or a figment of my imagination.
  2. I reserve the right not to hug or kiss my child after he has touched a reptile.  I love him, but I have limits.
  3. If we go solo to the zoo or the aquarium, we must skip the reptile house or snake areas.  He is only allowed to visit the reptile house or snake areas when we go with someone who can physically and emotionally survive the tour without looking like a complete moron.
  4. Cartoons with snakes are allowed—except the snake in the Penguins of Madagascar cartoons.  He is sneaky and can’t be trusted.  I don’t like him.
  5. Stuffed snakes are acceptable; however, they must look fake—meaning they continue to be neon and smile.

Now, let’s hope Caden doesn’t find an interest in clowns…

Heads, Carolina. Tails, California.

I know when Caden is getting sick. Any illness seems to set in at night—right when I go to sleep.  That moment of peaceful bliss when I fade in dreamland is when the bedroom door knob starts rapidly shifting back and forth.  My first thought is that a crazed madman or zombie is inpatiently waiting to send me to my doom.  I pull the covers up tighter as the door flies open and a 4 foot sniffling and whining shadow appears stoic in the door frame.  Then, he slams the door to ensure we are officially awake.  Charles and I stumble about preparing for whatever is ahead.  This past week the illness was an eye infection in both eyes—a commonality for Caden.  Charles and I quickly decided I would take the sick day, since work was slower for me.  I started the medicine regiment, Vicks machine, and humidifier.  Even with these implements, I managed three hours of semi-sound sleep.  The next day I still had to be “mommy” for a sick child.  However, Caden and I deal with illnesses differently.  I want to stay in bed and sleep.  He wants to wreak havoc on whatever crosses his path. 

I’ve always taught Caden to leave “my stuff” alone (china, knick-knacks, etc.).  But on this particular day, he had “forgotten his raising.”  I tried time out.  I made him lay down, but he refused to take a nap.  I tried EVERYTHING!  He was so tired; he was beyond reason.  I had to take a shower before taking him to his doctor’s appointment.  While I was showering, he knocked every item on the coffee table in the floor.  I heard the chaos in the shower.  I could still hear him; he was fine.  So, I just stayed in the shower.  I did make him pick it all up, but soon, he was raking the items on the end table in the floor.  He was determined to be terrible, and I was just trying to survive.  We were the Titanic, and we were sinking quickly.

Raising a special needs child can be a daunting task, especially when the child cannot verbally communicate pain, feelings, or discomfort.  I find myself playing the guessing game each time Caden acts “strange,” will not eat, or wakes me up in the middle of the night.  I find myself at our most-awesome pediatrician’s office asking for a complete check-up.  I need an expert to help me determine the problem.  But, it could simply be a headache, stomach ache, tooth ache—who knows?  The fear and lack of communication only compounds my stress and escalates Caden’s inappropriate behaviors.  

I had a meeting that evening; I decided the meeting was crucial to attend.  In reality, I had to get out of the house.  I had to get away from being a “mommy” for a while.  I parked a block away from the meeting location just to walk and clear my head.  When the meeting was over, I returned to my car and sat looking down the road. 

The interstate was not that far.  I remembered that old country song, “Heads, Carolina. Tails, California.”  I contemplated my options.  I probably could make it to the state line before I was missed.  I didn’t have any cash though—credit cards can be tracked.  The ATM was close though.  I longed to turn my music up, turn my phone off, roll the windows down, and hit the open road for as long as the highway patrol would let me.

Then, I received a text from Charles.  My mom was volunteering to buy us dinner and have it waiting for me.  Dinner sounded nice.  He updated me on Caden.  My little hooligan was getting tired and waiting for his “Mom-Mom.”  He asked me how much longer it would be before I could come home and rest.  Rest…that sounded better than a road trip.  I would probably fall asleep around Nashville anyway.  I decided the interstate was not for me.  And, I returned home.  But, for a moment, my options were endless.  But, deep down, I knew I could never leave.  How would my guys manage without me? 

So, as I found myself driving through the city back to our home, I was thankful—thankful for a support system that I can call upon when I absolutely must get out of the house, thankful for a husband who is willing to let me rest, thankful for a child who wants a kiss before bed, and thankful for an interstate sign that reminds me my family would come looking for me—eventually. There really isn’t a feasible escape option.  I rely on my monthly dinners with a friend who is a therapist, diet cokes, and the love of family members to serve as my GPS.  They always lead me home, where I am needed and belong.

FMD is not a dirty word.

As an opinionated teenager, I would often hear stories about other people’s actions to which I would reply, “I will never do that.”  My Grandmother would reprimand me and say, “Don’t say you would never do something.  You don’t know what you will have to do.”  But, I am stubborn.  After Caden was born and our school years grew nearer, I started telling myself and others, “I will never allow Caden to go into the FMD classroom.”  There it is again—“Never.”

 At what point in my life did I decide FMD was a dirty word?  At what point did I decide it was a place that I didn’t want my child? Keep in mind, this is about me; it’s about my personal journey.  It’s about how I have grown as Caden’s mom.  Every child is different!

I hear politicians and experts debate the benefits of inclusion.  I have a confession about my experience with inclusion. When I was a regular education classroom teacher at the high school level, I often worked in a collaborative setting.  I enjoyed the work; however, I was not trained as a special education teacher.  Because of high numbers of students and low personnel (a battle parents and teachers cannot always win), the special education teacher was often pulled to work with another student in a different classroom.  There I was, alone with students I was not equipped to teach.  Successful inclusion or unfair?  I did the best I could; however, my best was not founded or steeped in my educational background or experience.  Most argued benefits are accurate.  I agree inclusion is a wonderful opportunity for Caden.  I am so happy to see him in a regular education classroom where he makes friends, educates others on Down syndrome, and shows his abilities.  However, I recognize Caden does not thrive academically in this environment.  Accepting this has caused me personal turmoil.  I wanted him to thrive in this environment.  I wanted him to be like his peers in a regular education classroom.  But, I quickly learned what I wanted and what Caden wanted were two different things.  Isn’t that how it normally is with parents?

We started our educational journey in FirstSteps where the education was one-on-one.  Then, we progressed to preschool where everyone was on the same level and taught in the same classroom.  Next, we tackled kindergarten—I faced reality.  Caden started having trouble keeping up academically.  The class moved on—as is the way of the regular education classroom.  Luckily, I recognized this from my teaching days.  I recognized how terrible I would feel to be lost in a classroom, to feel left behind.  Caden is still learning numbers, shapes, colors, and letters.  He is conquering cutting, coloring, and writing.  This year, Caden’s kindergarten classmates moved to the first grade.  While Caden will visit his former classmates, he is not able to do the first-grade work at this time. His peers have mastered some mathematical concepts; they are reading. 

After some reflection and a few tears, I came to a realization.  More students could use the structure of the FMD classroom.  Concepts are taught through small-group instruction.  Students are given tasks and classwork based on skill level—not on what is next in the textbook.  Students are allowed to set a learning pace. All learning styles are addressed. Social and living skills are taught—more kids need these in my opinion.  Lifelong friends are made.  Parents bond, because we have an immediate and obvious commonality. 

Of course, parents must be watchful and formulate their own opinions.  I was often afraid the bar would be set too low.  I seem to remember making that comment.  However, for Caden, the bar is set too high in the regular education classroom.  I believe a regular education classroom challenges Caden, which is great.  However, the FMD classroom allows Caden to be a leader and allows him to find more success; he is guided by professionals who are equipped with the knowledge to teach students with his disability. 

It took time for me to grow as Caden’s mom. Now, I look at his accomplishments; I look at how far he has come.  And, I know we are continuing our educational journey together. I hope reading and writing will be in our future.  But, I know we must conquer letters and coloring first—at Caden’s pace not his Mom’s. 

I am grateful for the teachers who help Caden reach his potential.  Caden is grateful for them as well.  A few nights ago, when I put Caden to bed, I explained he would have school the next day.  He smiled and quickly went to sleep; he was eager to see his friends and go someplace where he could be successful, where he could belong.  Even children with disabilities crave Maslow’s Hierarchy of Needs (http://en.wikipedia.org/wiki/Maslow’s_hierarchy_of_needs).  Thank goodness Caden is at the “Esteem” level.  I am proud of Caden’s accomplishments.  As he would say with a series of claps, “Yay!!!”

A Hippo’s Gotta Ride

Oh, the things we do as parents.  My mom tells me, when I was a child, I would only wear clothing from Sears with a Winnie-the-Pooh tag.  She eventually started cutting the tag out to put in other clothing.  She didn’t have to do that, but it was a simple solution to keep peace.  I was slightly spoiled.  

In watching the Olympics this evening, I heard the commentators mention the family of a young gymnast who recognized her talent, uprooted their family, and moved to be closer to a gym to best fit their daughter’s needs.  I couldn’t help but think about Charles and I who made the decision to move, from the only community I have ever known, to the city.  We wanted Caden in a centralized location and  close to our work, so we could attend school parties, IEP meetings, etc. during lunch hours.  

As parents of special needs children, we have even more “things” we have to do.  We have more doctors’ appointments, more tests, more medical worries.  We attend more meetings at school listening to our child’s struggles and accomplishments.  We spend more money on therapies to help ensure progress to maximize our child’s potential.  Some parents get to stop fundraising when their children progress out of the educational system, but we must continue fundraising for our causes.  Many special needs parents continue to coach athletic teams until physically impossible to do so.  We fight for inclusion, advocate abilities, research, and work toward financial security for our loved ones. I suppose these “things” keep us youthful. 

We trudge to amusement parks, buy tickets to the biggest events, buy all the necessities and more, and are rewarded with hugs, smiles, and sometimes non-verbal “I Love You’s.”

Oh, the things we do.  Oh, the places we go.  We recognize what our children need.  And, to some, our actions may seem crazy.  Caden will say the alphabet when cheerleading.  So, Charles and I practice our cheerleading to get the verbalization.  “T-O-P-S, Tops Tops, Tops” is a favorite, as we teach Caden to cheer on our WKU Hilltoppers. On our latest trip to Florida, we decided to take Caden’s favorite stuffed animal to help him sleep at night.  When the magic side door opened on our new minivan, a wide-eyed Caden produced a grin.  Waiting for him, securely belted in the passenger seat, was a 3 ½ foot, 5-8 pound stuffed “Hippy.”  The stares on the interstate were priceless as Hippy bounced down the road.  After all, for Caden, a hippo’s gotta ride.