For the last three years, I have been absolutely distraught about potty training.  I did my typical “Mommy” routine of research, trying different approaches, and we would still have accidents.  My grandmother has trained many children, but her technique did not work with him.  I read books to Caden about using the potty.  He went to the bathroom with Charles, which would always lead to a commotion with clamoring and a series of “no, no, no” and “stop.”  I asked other parents who told me a wide range of ages for their child’s potty success.  We certainly did not want to increase the pre-established age range.  But, Caden wasn’t getting it. 

Then, it happened; Caden decided it was time. We are proud to proclaim Caden is pull-up free during the day.  He shakes fist making the appropriate “potty” sign when he needs to go.  We are so proud of Caden; we are proud of his determination and perseverance. 

Even without saying the words, Caden is constantly making his opinion clear:  “I can do it by myself.”  I find that having a child with a disability makes “babying” incredibly easy.  No matter how much I advocate for children with special needs, I need Caden to remind me he can do it by himself.  He can feed himself; I just have to clean up the mess.  He doesn’t want me to wait on him; he wants to help dish the ice cream or pour the milk.  He wants to attempt to put his clothes on; then, come to me for help. He wants to cover himself up at night; he jerks the covers out of my hands if I try.

He wants to grow up.

And, I have to let him.

After all, that is the dream, right?  Independence? Of course, I treasure each milestone Caden meets.  However, I also know each milestone is one less “thing” I get to do for him.  I am always redefining my role as his mother.  Just a week ago, he needed me to buy pull-ups.  Now, he needs me to buy cool underwear for him.

At least I still have laundry, cooking, and cleaning!  There’s little chance Caden will say, “I can do it by myself,” on those necessary chores for a long time—I hope—I think.

Caden is incredibly observant. I like to think of his special skill at “stealthy observance.”  He is mostly non-verbal; therefore, people, including me from time to time, think he does not understand.  However, understanding and communicating are two separate skill sets. If I am working on something or doing a household chore, Caden pays little attention to me.  He may walk by where I am working and just smile.  Secretly, he is processing my procedures, tasks, and desired outcome.  Caden taught me about how well he “understands” with a hammer. You read correctly.

A couple of years ago, I decided to hang some pictures.  Caden paid little attention to my efforts; instead, he ran around the house playing with stuffed animals.  After completing my task, my attention was pulled in a different direction.  I started working on laundry on the other side of the house.  As I sorted clothes, I could hear a soft thumping.  I decided to stop with my latest chore and find the source of the sound.  The thumping became stronger and louder as I approached.  I found Caden holding a hammer in one hand and a nail in position on the wall.  He was armed and, most assuredly, dangerous.

He has shown his stealthy observance in other ways too.  For example, I have found stuffed animals and pull-ups in the washing machine that were not in the dirty laundry. I appreciate his effort to save us money on pull-ups and to play with clean animals.  Capri Sun pouches are found in the dishwasher; that’s why I always check one more time before I turn it on. He knows the use of all power tools and make-up application equipment. I find him dusting from time to time.  Resembling me shopping, he pushes his cart through our living room picking items up to verify the price; then, replaces the item on the shelf.  While walking through K-Mart’s toy section, he picked up a sword and proceeded to demonstrate his sword fighting skills.  Wow, I guess he does pay attention to movies. 

While entertaining and exciting, I recognize observation is also dangerous.  Caden is obviously a visual learner, which means careful screening of television shows.  It also means careful screening of our behavior. I think the latter is the most important lesson.  We all see the parental warnings on television — those gentle reminders about violence, language, sex, crude humor, etc.  However, we don’t come with a rating system to warn others of our upcoming behaviors.  Therefore, parents are left to screen people like television shows and to modify their behaviors to teach by example.  In Caden’s case, those lessons are not just moral, they are daily living skills like doing laundry, cleaning the house, getting dressed, and, yes, decorating.  After all, “Monkey See; Monkey Do.”

It’s Memorial Day weekend.  Time for family, cookouts, the pool, relaxing…Sounds great, right?  Memorial Day was originally coined “Decoration Day” to honor the sacrifices of Civil War soldiers.  In 1971, Congress established the official “holiday” weekend which traditionally was used to honor those who served our country.  On this Memorial Day, I am writing to honor the individuals who have died and played a vital role in preparing me to be the “Mom-Mom” I am today.  I am sure many years ago these individuals didn’t realize the impact they would have on my life.  The lessons I learned were subtle and taught through example. So, here goes…

1.  Grandpa George.  Kindergarten was a half-day—thank goodness.  I hated my first year of school—too many rules and kids for me.  I always eagerly awaited dismissal.  My grandmother would pick me up, and we would drive to my great-grandfather’s small house on a massive farm for a visit.  My job, upon arrival, was to get the mail.  There was just one problem; I wasn’t tall enough to reach the mailbox. I wanted to complete this task independently.  After a few days of my grandmother helping me, my great-grandfather decided to provide an “accommodation” in the form of a concrete block at the base of a mail box.  When I retrieve a stool for Caden to wash his hands or to help with placing cookie dough on a pan, I think of that concrete block. 
2. Sugar Mom.  My great-grandmother earned her name from her grandsons who always enjoyed her homemade sweet-treats.  I credit her with giving me my eternal craving for knowledge. She would clip articles from newspapers to share, if she deemed the information valuable. She also valued books.  She encouraged me to read and write to the best of my ability.  Little did she know, the research and writing would be a great benefit to me on my journey with Caden. 
3.  Kermit and Opal Morgan.   While not related to me, this couple treated me like a grand-daughter.  I spent many days with them while my family worked.  We worked in the garden, cooked fresh fruits and vegetables, took trips to town just to eat at Long John Silvers, and went to the orchard to pick apples.  They taught me to love One Life to Live, Little House on the Prairie, and The Price is Right.  However, the greatest lesson was learned while standing in the commodity line at the Richardsville Volunteer Fire Department.  They qualified for cheese, canned goods, and molasses from the federal government. At the time, I had no idea what it meant to stand in the line with the others—the connotation, the stereotype.  It was wonderful fun, because I got to meet new people from all over the community. It’s amazing what you remember when sitting in line at the Department of Medicaid Services to get or renew a Medical Card.  It’s amazing how memories cause you to move closer to the person next to you and strike up a conversation.  I truly appreciate this lesson; I continue to meet people facing similar struggles.
4. My Dad.  The greatest lessons I learned about being a parent, particularly the parent of a special needs child were learned from my father. Of course, he passed away long before I had Caden.  But, when I recall events from my childhood, I find it quite eerie that so many were strategies I would need with Caden.  First, Dad was an avid volunteer with the Special Olympics through the Special Events Medical Team.  I was introduced to disabilities at an early age and taught to appreciate each person—to appreciate life. He taught me to be strong in medical situations—someone has to be. How could he have known the diagnosis, the labs, and surgeries I would later face with Caden?  I was given a love of music—the same music that soothes Caden when he cries or makes him dance when I play the piano or sing a lively song.  He taught me to be me, to not be swayed by pessimists, and to live my life with hope, love, and compassion.

These individuals are fondly remembered.  I tell Caden about them; I honor them through following their lessons.   Before Caden was a twinkle (a thought), I was being prepared.  I am in debt for the lessons, even if I did not fully grasp them until 20 years later.

 He can’t fly.

He isn’t faster than a speeding bullet.

He can’t stop trains with one hand.

He isn’t a mound of green muscle.

He doesn’t have x-ray vision.

So, what is Caden’s super power?  My answer would be: his charm.  How is charm a super power?  Charm leads to a social magnet that is so powerful people stop what they are doing to find the course of the pull.  I see it when Charles and I take Caden out. Of course, he has all the facial features of Down syndrome, but he has something super and powerful to add to that extra chromosome.

You know, most people with super powers have to keep them a secret.  Bruce Wayne hides the super cool car in the cave.  Clark Kent hides behind glasses.  Peter Parker hides behind a camera. Bruce Banner must control his temper.  Thor keeps his hammer out of sight.  The list goes on and on.  But, Caden… he doesn’t have to hide his super-special power.  And, people instantly recognize him and acknowledge him by stopping to speak to him or smiling in his direction.

At a relative’s graduation ceremony six hours from “home,” a polite lady who saw Caden sitting patiently through the ceremony found us in a crowd to give him a toy.  At Dollywood, an elderly man on a bench playing a miniature guitar called for us to come over and let Caden play his guitar.  We later found out his son has Down syndrome.  At WKU’s Mardi Gras themed Homecoming parade, Caden collected over 20 strands of beads from parade participants.  After waiting in line for tickets at Dinosaur World, the cashier decided Caden needed a plastic dinosaur. 

Caden has had these super powers since he was a baby.  My favorite Caden “super power” moment came during a professional conference.  I strive to find balance with being a professional and a mom.  One way I was able to find balance when Caden was a baby was he and my grandmother would go to conferences with me.  He was too little to sight-see, so they would enjoy the hotel until I was available.  On check-out day, she and Caden waited in the lobby while I attended my last session.  At the conclusion of the session, I headed to the lobby to get them for our trip home.  My heart sank.  A crowd of people were circled around the area where I had left them.  I hurried to them worried over what I might find.  To my surprise, nothing was wrong.  Caden was entertaining the group with waves and smiles. 

In downtown Indianapolis, the lobby of a ritzy hotel lit up with Caden pushed his Thomas the Tank Engine luggage across the lobby ignoring the bellhop’s request to help.  Even the bellhop forgot about a missed tip opportunity and smiled.

Caden’s social magnet is powerful.  And, like the family members of super heroes, Charles and I strive to deal with the daily struggles of having a child with super powers.  I forget to put on makeup and run into a store with Caden… of course, people will stop us or look happily at us.  I’m in a hurry to get to an important destination, and someone calls out for me to stop so they can play with Caden or to tell me about their child.  And, that’s fine.  That’s the price we pay for having a child with super powers—for having something a little extra.  I love that price. I love his super ability that comes from a disability.

Fortunately, I know there are more people with Caden’s super powers—an alliance if you will.   This group has plenty of villains to defeat, like those who deem them as burdens, those who don’t value their life, those who strive to prevent them from being born, and so on.   But together, this alliance of lucky heroes, who have “something extra,” will gradually change the world.

Several months ago, I sat in a Saturday statistics class multi-tasking (half listening while working on a grocery list).  For some reason, the conversation shifted to parenting and being a mom.  The professor, who knew I had a special needs child, asked me if I would agree that parents of special needs children spend more time meeting the needs of their children in a week versus parents of “typical” children.  My response?  I have no idea.  I don’t have a basis on which to draw a comparison.  This is my normal. 

Don’t get me wrong.  This didn’t use to be my pre-motherhood normal.  Sometimes I reminisce on yonder days of yore—those days where Saturdays meant sleeping until noon without Caden staring at me or poking me.  A weekend trip meant romantic dinners not one of us sleeping with Caden in the king-sized bed while the other slumbers peacefully in the other bed. A retreat to the bathroom was peaceful without someone whining outside the door or banging on the door. The car was free of stains instead of the spotted Palomino-like upholstery from thrown sippy cups. I could watch television and movies without reading parental warnings any time of the day.  The television volume could be the same day or night instead of the whisper-level now used after 8pm.  My electrical outlets didn’t have plastic nuisances stuck in them.  A trip down the hallway could be careless without fear of stepping on loud or crippling toys. Clothes were washed out of necessity not because of emergencies.  I could have “dinner-for-two” late.  Whew!  I don’t know how I have time to go to work.  But, I do.  This is my normal. 

If someone had a listening device in the house, that person would think I am crazy.  But, I consider the following quotes completely normal and quite motherly:

“Get your toe out of your mouth!”

“Stop licking the trash can. That’s gross.”

“Get your llama out of the door.”

“Baby Jesus doesn’t like to be thrown!”

Normalcy evolves as we evolve.  As creatures of habit, we adapt to our environment.  As “Moms,” we adapt to fewer hours of sleep.  We stop in the middle of dinner to attend to the worst dirty diaper known to man, come back to the table, and continue to eat. We learn that to be better moms we need a few minutes for ourselves, even if the break is being locked in the bathroom for five minutes. We change for the better, because, now, we have someone who needs us—who depends on us.  We keep nuggets from our past nestled away.  And, we reminisce on the days when we only really worried about ourselves, and it seems completely foreign. Because we have grown older; we have had children.  And, our world has turned upside down; our destination may not be where we had planned. Money became tight.  Days became too short.  But, the adventure is normal to us—and, it is priceless.  Happy Mother’s Day!

Last Monday turned dark and stormy rather quickly.  Charles, Caden, and I were on our way home to grab Caden’s horse riding necessities.  Mondays have become Caden’s favorite day of the week.

He doesn’t ask, “Is it Monday?” 

“Do I get to ride my horse today?”

“Can we go now?”

In fact, he doesn’t say much of anything.  But, his excitement is evident.  He signs “horse” and makes horse sounds while rocking in his booster seat.  This Monday was different though. I was certain rain would spoil his Monday routine. 

Charles and I debated whether we should drive to the farm with the impending storm. I had plenty of things to do at home.  We could stay inside and not risk getting caught in a storm.  Of course, it might not be raining at the farm.  Should we risk it?

Charles and I had dwindling faith in fair weather.  We had the National Weather Service to support our predictions.   Horseback riding would have to wait, right?  Caden would not be too disappointed.  I asked myself, “Does he really know its riding day?  Does he really care if we don’t go?”

A rustling sound caused me to turn from my internal debate.  That sound answered my questions.  Caden was standing by the front door with what he deemed to be necessities for the evening—a straw cowboy hat and a raincoat.  I stared at him.  He stared at me bidding me to hurry up.  So, I did. 

William Wordsworth said, “Faith is passionate intuition.”   

I would have to agree.  Caden has not been riding horses for very long.  And, these are not mere pony rides.  The lessons are rich with occupational therapy—it takes fine motor skills to put on a saddle; speech therapy—you have to tell the horse to go and stop; physical therapy—you have to use appropriate posture.  These lessons are work for Caden, but he still loves them.  He is passionate about them.  And, that passion leads to his intuition.  To my surprise, the storm bypassed the horse farm only sparsely sprinkling tiny rain drops—perfect for a rain coat and perfect for a straw cowboy hat.  I must have needed a lesson on faith and being prepared.  Obviously, I needed Caden and his “passionate intuition.”

I know several of you like my stories about Caden.  However, this one–well, it is therapy for me.  It isn’t cute.  It is serious…and, it’s about me.

Here goes…..

I love being the parent of a special needs child.  Believe it or not, it fits my skillset.  However, there is one part I absolutely hate.  It’s not cleaning up all sorts of “accidents,” getting occasional strange looks from people, attending IEP meetings, or frequent therapy/doctor visits.

 I dread it.  I cry about it.  I worry about it. 

What could it be?

Surgery.  I can’t explain it to Caden.  I can’t get him to understand this is for the best or that he will feel better.  Even the simple procedures wreak havoc on my life. No words of encouragement make the worry better.  I can write about it, but I won’t talk about it.  I won’t talk about my fear…

My dread…

 My internal angst.

Before Caden was a year old, we endured a sub mucous (hidden) cleft palate repair. It was the worst experience of my life.  And for those of you who know me well, you now I have had at least one event that probably should have trumped the surgery.  But—no.  This was it.  This was my moment. 

Of course, Caden recovered after the surgery.  The physicians and staff were top-notch. I wouldn’t expect anything less at Vanderbilt.  We all survived the hospital stay—the long walks to clear our heads—the occasional sighting of a very sick child who seemed to put our plight in perspective. But, I still feel the tug which is physical and emotional.   When Caden was “dressed” for surgery, Charles and I had to hand him over to a very polite nurse.  To take him from me required a slight tug.  My heart tugged as well.

And, Charles and I have started preparing for the next “tug” in a few weeks.  This procedure will be simple.  The physician says he has performed around 7,000 of these “routine” procedures.  I really do like the physician; I like his confidence.  However, this is our second procedure.  The nervousness is still there.  The emotional distress which makes me want to “clobber” anyone who says that I shouldn’t worry or who nonchalantly says things will be fine. I want to track down all the office assistants at the doctor’s office who don’t return my calls or take my questions seriously—who seem bothered by my nervousness or concern.

To compound matters….I can’t explain the surgery to Caden. He would not understand.  If I tried, he would probably laugh and throw a stuffed animal at me.

 Will he wonder why I changed his clothes and left him with a stranger?  Will he wonder why he is in the hospital?  The cold, hard truth…..Probably.

Amidst it all—I know Caden understands one key component in our relationship.  I might have to hold him down for shots (a blood gas test was the worst!), give him eye drops which he hates, discipline him for inappropriate behaviors, and pass him off to a stranger for surgery…but, I will always return armed with a hug, kiss, smile, and usually a song. 

Yes, I love being a special needs parent. I find comfort in knowing so many of you know how I feel. Even though you may not respond by comment or “likes,” I know you will think about me and Caden.  You know the struggle.  You know the “tug.”  You know—all to well—the part I hate.

Caden was not as bouncy Tuesday morning. When I put on his shoes, he usually heads to the bathroom to brush his teeth and comb his hair.  Instead, he emphatically told me “NO.”  I insisted.  He reluctantly complied.  Moving as slowly as humanly possible, he walked to the car.  When we got to school, I had to nudge him along.  I was frustrated.  I found myself saying typical mother-like things.

“Come on!”

“Today, Caden.”

“Speed up!”

He wasn’t sick.  He was fully dressed.  He had enough sleep.  The big picture illustrated Caden was fine.  So, what was wrong?

His teacher greeted us at the door.  For some reason, Caden seemed relieved.  She and I had a brief conversation, but her last question made everything perfectly clear.

“You know Caden’s shoes are on the wrong feet, right?”

That’s a condemning question.  Neither answer would qualify me for a “Mother of the Year” award. I dropped my head, took the walk of shame to the car, and went to work.

All of the major details were covered.  Caden was clean, well-groomed, dressed, and at school.  However, I had forgotten one minor detail.  And, that minor detail was ruining Caden’s day.

Minor Details….they are important.  I am reminded of Naaman the leper.  He is a perfect example of someone who overlooked details, because he was in such a hurry to see the end results.  A young, servant girl told Naaman’s wife of her former employer, a prophet who could cure Naaman’s leprosy.  She was sure he would be willing to help Naaman.  Naaman was so excited that he went straight to his king to ask permission.  The king was excited for Naaman and sent him to Isreal with a letter to the king.  The letter asked the king to heal Naaman.  This is our first infraction on paying attention to detail.  The young girl told Naaman to visit the prophet—no doubt she told him the name.  Instead, he went to the king and asked for him to cure the leprosy.  The king was shocked; he couldn’t do that.  Elisha, the prophet, heard of the request and visited with Naaman.  He told Naaman to dip seven times in the Jordan River.  Now, we have our second infraction on paying attention to detail.  The Jordan River was dirty.  So, he decided he would go home where the waters were cleaner.  With a little help from his friends, Naaman remembered the minor details.  Elisha was a prophet, and if he said dip seven times in the Jordan River, you should dip seven times in the Jordan River.  His day got better just from paying attention. (2 Kings 5:1-13)

How often do we spend time looking at the end result without focusing on the minor details?  We may want a better future for our children and forget to advocate.  We might have a big project to implement but fail to get advice from those who will be affected.  We might get our child ready for school but put his shoes on the wrong feet. 

This details we omit or forget to check affect our happiness—or in this case Caden’s happiness.

“A mountain is composed of tiny grains of earth. The ocean is made up of tiny drops of water. Even so, life is but an endless series of little details, actions, speeches, and thoughts. And the consequences whether good or bad of even the least of them are far-reaching.” ~Sivananda

A “free and appropriate education” is a right for all children in the United States.  I am grateful for advocates who paved the way for our special needs children to attend public schools and be educated alongside “typical” children. Why?  Caden learns best through example.  Of course, Caden requires special services which take him out of his regular kindergarten class.  And, that’s OK.  Caden does best in small group instruction.  He is behind his peers academically and verbally; therefore, Caden receives specialized instruction to meet his needs.

Now for the spin…I’m not going to write about Caden’s success or the success of other special needs children in public education.  I’m going to write about the “other kids.”  That’s right—the children who are “typical.”  These children have always been allowed to attend school with their “typically” functioning peers; however, while free, the education was not appropriate.  Why?  It was exclusive.  Sure, the educational system taught the basics.  The children were successful by attending college and/or finding productive employment opportunities.  However, many never saw a child with special needs. Those children were educated elsewhere. 

An “appropriate” education is inclusive.  Of course, studies prove the benefits of inclusive education for special needs children.  But, what about the benefits for the “typically” functioning child? Let’s see if we can make a list:

1.       Tolerance.  Is there a better way to learn about disabilities and their implications?  Being around children with disabilities teaches compassion and understanding.  Of course all students may not learn this, but the possibility is reachable with inclusion.

2.      Acceptance. We want our children to be accepted when we go to restaurants, museums, etc.  From personal experience, I can say most of the “looks” (while few) I get are from parents or grandparents.  We have had a few experiences where children are not accepting; these instances always make me wonder about the child’s “type” of education.  Is the child ever exposed to others with disabilities?

3.      A Future Investment.  Thanks to legislation, our children will grow up with children who could become future employers or caregivers of those in the special needs population.  I find comfort in knowing the future holds further potential for our children. It’s possible these children will stop bullying at school, help with homework, or invite our children to parties.

Inclusion is powerful for all children.  Caden’s teacher shared a story with me which illustrates children learning acceptance.  Caden’s kindergarten class was discussing the letter “M.”  The teacher shared the letter “M” makes an “mmmmm” sound.  A little boy raised his hand.  When called on, the little boy said, “M” must be Caden’s favorite letter.  Surprised, the teacher asked the boy why he felt this way.  He said, “Because Caden says ‘mmmmmmmm’ all the time.”  It a few short months this little boy has developed tolerance and acceptance. 

Inclusion is free, and it is appropriate for all.

I recently read an article in which Sarah Palin discussed her son greeting each day with a round of applause.  It made me laugh.  Why?  Because Caden hops into each day.  And, that made me think…what does our “greeting” to each day say about us?

I wait until the last minute to roll out of bed.  At the last possible second, I stumble out of bed and blindly reach for my glasses.  Then, I begin the morning rush. A thorough, quick shower is a fine science. I have everything in order to grab.  My morning routine is to rush, grab frantically, and squeal into a parking spot (which is like an egg hunt—Happy Easter!).  My day is rushed with phone calls, emails, complaints, meetings, problems, whatever! I return home to rush through dinner preparation, laundry, and homework.  I suppose my morning sets the entire mood for my day.

Caden, on the other hand, hops into each day.  Charles and I hear him plop out of bed, hop down the hall to the bathroom, hop through the living room, and hop up on the couch.  He jumps into each day with full force.  He is ready for the day’s challenges.  And, his challenges at school are equivalent to my challenges at work.  Yet, he is always ready to grab his bag and hop into school.  He bounces up and down when we see a bus on our way to school.  He waves to his friends.  He blows me a kiss and tells me “bye” with a big smile. 

Caden isn’t afraid to plunge into the day.  I dread the day’s plunge!  I disagree with the old stereotype that people with Down syndrome are stubborn.  I would argue some people (Caden included) with Down syndrome are persistent.  In this case, I am stubborn—imagine that!  Caden is trying to teach me how to greet each day.  Yet, I am stubborn.  I am confident my way works—and it does.  However, I rarely return from work with a smile.  I guess I can learn quite a bit.  I am so glad Caden is patient enough to teach me through example.  Perhaps, one day I will learn. 

What is your child trying to teach you?  Have you listened?  Are you a “hopper?”