Dear Noah...Thanks For Helping Me Grow

The following story is part 2, click here  to read part 1.

Although exhausted, when Steve and I finally crawled into our beds after spending 12 hours in the car to take Noah to Camp Barnabas, I found myself unable to rest.  The house was not only quiet, it was empty.  Natalie was spending the night with her grandma and Noah was more than 300 miles away.  It felt odd not having them near.  I tossed and turned and attempted to get comfortable while Steve lay motionless.

"What in the heck are we going to do when they grow up and move away?" I shared.  "We'll have nothing to talk about!" I continued.

"Oh, we'll just have to have lots of sex then," retorted Steve.

"You're so funny," I replied.

"Hey, that wasn't meant to be funny," said Steve.

Within minutes I was asleep.  The next day, I kept myself busy with various errands, but by late afternoon, I was dying to know how Noah was doing...without me.  I sent a quick email to their "mommy checks" account and tried to go about my day.  I didn't know how often they check the account so figured it could be Tuesday morning before someone responded.  However, at 9 p.m. I received a call from Amanda, a nurse practitioner working at Camp Barnabas.

"Noah has a terrible middle ear infection," explained Amanda.

She had checked to make sure he wasn't allergic to any medicines and had already started him on penicillin as they had some available at camp.

"He should be feeling better in a couple of days," added Amanda.

I couldn't believe it.  Noah hadn't had an ear infection in more than two years.  Apparently it was Murphy's Law that he get one when he's miles from home, but I didn't have to like it.  I felt helpless and slept poorly that night.

The next morning I contacted Amanda to ask if I should come and get Noah, but she assured me it wasn't necessary because when she went to give him his morning meds, he told her he slept well and had no pain.  A little while later I received a response from the camp director through the mommy checks email system:
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Noah is doing great!  He is already feeling better so please don't come get him.  There is another boy at camp that loves Star Wars and they are having a Star Wars party this afternoon.  Noah talked to one of our staff guys about how to make more friends so they are practicing how to do it.  He did all the activities yesterday including sand volleyball, disc golf, and T-shirt making.  He is so sweet and we love having him here.

Thanks,

Kayman

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While I felt relieved he was feeling better, I'd be lying if I said, I wasn't a little disappointed.  I was definitely having a tougher time with this separation than Noah, it seemed.  When the day finally arrived to go get him, I was more than ready.   We pulled into the entrance of the camp just minutes after it opened, but we found the place already full of parents and campers toting their belongings to their cars.  As Steve fumbled with his camera, I snapped at him to hurry up. When we were about 75 yards from Noah's cabin, we spied him waving and calling out to us enthusiastically.  Then, Noah just took off running towards us.  I relished the moment as he collided into my arms.

Looking up at me with teary eyes he choked out "Mahhhmmm."  But, before I could respond, he added, "I want to come back.  Please...can I come back?"

Hmmm...I'm pretty sure you must leave a place before you can technically come back to it, but instead of sharing this bit of knowledge, I simply sighed and replied, "Of course!"

Saying good-bye to his team of counselors was tough.

Noah and I at the closing ceremony.

Noah with his Star Wars buddy, Jack.

He said, "yes" to so many new things.

"Was it scary?" I asked.  "Yes, it was very scary...I only went down it 6 times," replied Noah.

JT, though Noah thinks he's Obi One, played along and took Noah for a ride in the "Millenium Falcon".

Dear Mom...I'm Growing Up

When you're a parent you'll do things for your kids that you wouldn't do for others, even yourself.  The moment I became a mother, I was 110% vested in my child's future success.  Sometimes, ensuring it has meant going the extra mile, but this past Sunday it involved traveling 625 miles...round trip.

With three bags full of Noah's belongings, we loaded up our Camry and headed to Memphis to take Noah to Camp Barnabas or "Camp Barnacles" as Natalie calls it.  Camp Barnabas provides children and young adults with special needs and chronic illnesses, the opportunity to try new things in a way that is safe and successful for them.  Through adaptive activities, they become participants rather than observers.  All of this is provided in a Christian camp setting.  The week Noah would be attending was specifically designed for those with Pervasive Developmental Delay (PDD). Although the plan for this trip had been set in motion six months in advance, when the day finally arrived to go, I wasn't quite prepared.  I still couldn't believe that my kid, the one who used to bang his head on our hardwood floor when upset and spent more years in pull-ups than I care to count, was now going to be eating, sleeping...and living without me, and my mommy-safety net for six days and five nights!

As I double-checked his items list, it was as if my head and body were disconnected.  I couldn't really think about the drop off.  I could only focus on the tasks I needed to do in the here and now -- like labeling every stitch of clothing and personal item Noah owned.  When I asked Noah if he wanted me to pack along his sleeping buddies -- a stuffed Scooby Doo and Beanie Babies, Claude the crab and a pug named Wrinkles, he responded with a horrified look and then vigorously shook his head no. It seemed he planned on jumping into the role of "big kid" with both feet.  I wondered what else he was thinking about shirking...surely not hugs and kisses from his mother.

The drive down was an adventure in itself as Noah had not been on a long car ride since he was a baby. About an hour into our trip, we made a rest stop at a McDonald's. When I emerged from the restroom I found Steve and Noah waiting for me.

"Did he go?" I whispered to Steve.

"No, he wouldn't go.  There was a fly in the stall," replied Steve matter-of-factly.

"What?" I responded.  "Noah, come with me," I commanded as I took his hand and quickly pulled him into the ladies' room. Once inside Noah scanned the room shell-shocked.

"Mom, I can't be in here.  This room is for girls!" stated Noah.

"Noah, no one is in here.  It's fine.  Besides, we won't be stopping for another hour.  Go ahead, it's clean," I said. 

Without another word he entered a stall and locked himself in.  I stood near the sinks and waited.  As the minutes ticked by I counted the cracks in the floor and studied the tiles in the ceiling while woman after woman entered and left the restroom.  After 15 minutes, Noah whispered for me through the door.


"Noah, are you okay?" I asked.  With the room quiet again, Noah cautiously opened the stall door and peered out, "I can't go in here.  It's for girls," he decided.  Apparently he had spent the entire time standing fully clothed in the stall panicking that he'd be found out -- a boy in the women's restroom.

"Noah, you have to at least try because we aren't stopping again for at least another hour," I explained.


With a look of deer in the headlights, his big blue eyes accepted my words and 30 seconds later I heard a flush.  Success.

Back on the road Noah alternated entertaining himself with his DSi and Spiderman activity book while I thought about how far we had come.  I wasn't thinking of the miles we had traveled, rather the growth and accomplishments Noah had attained since we began our journey on Planet Autism.  When we were about an hour from reaching our final destination, we made one last pit stop at a gas station that also served Baskin Robbins.  Noah excitedly ordered a scoop of Reese's Peanut Butter Cup.  However, when the attendant handed him their signature pink spoon, Noah froze. 

"I can't use this," said Noah.

"What are you talking about, Noah?  It's a spoon. It's the only kind they have," replied Steve.

As Noah teetered on having a meltdown over the idea of consuming his dessert with a girly-colored utensil, I held my breath.  Eventually he decided that he wanted the ice cream more than he cared about the color of the spoon.

Although we arrived at the campgrounds right on time, a motorcade of more than 30 cars were already ahead of us. Camp volunteers walked alongside the waiting vehicles to check in campers.  

"Who do we have here?" asked the volunteer.

"Noah Felgenhauer," piped Noah from the backseat.

As the volunteer scanned and re-scanned his list in search for Noah's name, my heart raced as I second-guessed myself.  Inside I worried I screwed something up or didn't fill a form out properly.  

"No problem, I'll just make him up a badge right now.  I know I saw his name earlier.  I'm not sure why it didn't print," explained the volunteer.

So, while my anxiety was growing as our car inched closer to "the drop-off" point, when I looked behind me, I saw that Noah was grinning from ear to ear in anticipation.

Once we reached the end of the line, we unloaded Noah's things.  With hardly a glance at us, he headed straight to the reception hall to meet his personal camp counselor and receive a welcome cheer from the staff.  

Next, Steve and I parked the car and ventured to the nurse's station to drop off Noah's medications and get him formally checked in.  Our last stop was to meet him at his cabin and say our good-byes.  When we reached his "home away from home", we found him already making up his bunk.  While he chatted with his counselor, he seemed almost oblivious to our presence.   

Noah and Casey

Noah outside his cabin with his cabin manager, Kelso and counselor, Casey.

As Steve tugged on my arm, I frantically rattled off the detailed instructions I'd written out in a two page letter to his counselors.  I gave Noah a hug and turned around quickly so he couldn't see the tears that threatened to ruin my strong front exterior.  Steve and I headed back to St. Louis and although our car was visibly lighter, my heart was heavy as I realized my baby is growing up.

Part 2: Dear Noah...Thanks for Helping Me Grow

Acting Up and Loving It!

On Friday, while watching Natalie sashay across our city center's stage to prepare for her scene, I was reminded just how lucky we are to live in a community that values and supports the arts. This past week Natalie attended drama camp through Shrewsbury's Parks and Recreation Department.  The fee for the five day camp was minimal, but the skills and confidence she gained in class were priceless. Under the direction of our high school's drama teacher, Colleen Malone, Natalie and 30+ girls, many with little to no theater experience, learned about improvisation, pantomime, costume and set design and more. Malone not only directed, she inspired and drew out each girl's creativity in a way that felt safe and fun.  

Natalie returned home from her first day and announced, "Drama camp is AMAZING!"  Before she was completely inside, she was showing me her "warm up" exercises.  She was excited to demonstrate her developing mime-walking skill and told me all about the puppet she made at camp. Within minutes, her enthusiasm over puppets inspired her to set up a show in our living room.  I sat down and listened, but couldn't help but take notes. 
Once upon a time there was a small, gray tiger named Lulu.  She lives on a small iceberg called Pola.  She's a curious tiger.  She used to live on a ship, but she got thrown out by the pirates.  They threw her out of the ship because she always had hair balls.  She floated on a piece of the ship until one day she saw a floating iceberg.  

"Hmmm...what's that doing here?" she said.

She took a lick.

"Brrr!  That's cold."

One day she slept on the iceberg.  The iceberg moved and broke into pieces and she jumped off it onto land.

"Oh no!"

The iceberg broke.  She tried to fix it.  She was so upset.

"What am I going to do now?"

She licked one piece of the iceberg then she sent her Grandma a letter telling her she needed carrot seeds to grow food.  She received one carrot and a piece of carrot pie.

"Yummy, yummy," said Lulu.

She wanted to eat the pie, but then she remembered -- veggies first!  She learned that on the pirate ship.  She licked all the crumbs and then ate all the pie.

The End.

Each day her joy for drama camp only grew as she showed off her "tongue exercises" and brought home colorful masks and told me all about her new "best friends" at camp.  I was impressed with her ability to recall and perform the difficult twisters like, "Big black bugs bleed blue black blood, but baby black bugs bleed blue."  By the third day, I was sharing Natalie's enthusiasm for class with her teacher and inquiring about future camps.  Malone appreciated the positive feedback and then shared, "Your daughter is among the youngest in the group, but she is absolutely fearless.  After one demonstration she's already telling me, I've got this."

"Yeah, let's just hope she uses her powers for good!" I responded.

Natalie is front and center showing off her creative endeavor.

Natalie and her partner practice their scene.

To learn more about the Shrewsbury Summer Drama Camp, click here to like them on Facebook.

Wipeout

Ever have a Friday that ends up feeling more like a Monday? 

Yesterday, I began the morning by burning the last two remaining slices of bacon for Noah's breakfast.  Yup, that's right, the kid who once only preferred Star Wars smells, now not only likes, but thanks God for processed pork during our dinnertime prayers.  Somehow I was able to convince him that it was just extra crispy.  After getting him off to camp, I was then left to deal with the rats nest of tangles that make a home atop Natalie's head every morning -- no matter how much conditioner, detangler and leave-in tonic I apply the night before.  I've been trying to convince her to cut her waist-length mane, but her reply is always the same, "No, I want to be like Tangled."  Indeed.  

Natalie's camp was meeting at our community pool, or so I thought.  We arrived to find the place deserted. Darn it.  

"Natalie, I thought you said they were meeting at the pool?"  

"Oh!  That's right.  We're meeting at camp.  Today is red day, I need to wear a red shirt," said the girl with a wardrobe of pink and purple.  

"Natalie, I don't think you own anything red." I replied.  

"I know!  I'll wear Noah's Cardinal shirt," announced Natalie. 

So, we drove back home, and got her changed into Noah's shirt and cinched it with a scrunchie so that she didn't look as though she were pant-less. We got back in the car and drove to the park.  Immediately I could see the place was packed with kids running around.  I started to breathe a sigh of relief, until I noticed that all of them were wearing swimsuits!  What the heck?  

"Natalie, I thought you said today was red day?"  

"Oh, wait!  That was Thursday!  The day I missed," she explained.  
 
When I couldn't find Natalie's group, I asked some of the kids milling about the playground what they had planned for the day.  I learned they were having a water play day and would be sliding down a big, hand-made slip n'slide. 

Fantastic.

Natalie and I once again got back into the car and drove home to change.  Talk about your deja vu! After helping her into her suit, we headed off once again to find her group.  We were told we would find them at the "big hill" next to the city center.  When we'd reached our final destination Natalie announced, "I'm a late mess!" My feelings exactly.  Thankfully, my boss was understanding and even with the morning's obstacle course of events, I was only 20 minutes late. Hmmm...maybe I should consider training for ABC's show, "Wipeout".

Visitor's Day

Thursday was Visitor's Day for the primary-aged groups at Camp Happy Day.  It's an opportunity for parents, friends and family members to shadow their favorite camper.  I arrived a little late as Noah's camp begins before Natalie's and by the time I had dropped her off and doubled back to Camp Happy Day, his P.E. class was already in progress. When I entered the gym, I found Noah making his descent from a 30 ft. climb.  And, he was just fine with that!  In fact, he was so comfortable with climbing - he was happy to head to the top again so that I could capture the Kodak moment.  It was awesome and a good boost to his ego to perform in front of his peers and me.

 

Fearless and Fancy Free

After P.E., I followed him to his speech therapy class.  He and two other campers worked with a therapist on idioms and I wouldn't be pulling your leg if I told you Noah seemed to be at home...maybe even enjoying himself during the session.

After speech he had arts & crafts and I worked alongside him to paint what will soon be a snake with movable parts made from toilet paper rolls.

Ssssss...So Much Fun!

Next, I joined him for his math class in which the kids each created their own cube as a tactile means to understanding basic geometry terms like base, surface, and volume. Prior to heading to reading, his last class, the group made a pit stop at the "prize store" to select a reward for completing their weekly homework assignments.

It's Hip To Be and Make Squares

Click here for more information on Camp Happy Day.   

Musings from Natalie #2

Me: "How was camp today, Nat?"
Natalie: "Good.  I found three centipedes!"
Me: (Pause)..."Natalie, where are the centipedes now?"
Natalie: "Oh, I put them in my pocket!" she beamed.  "Look!"
Me: "Nat, I thought you said there were three centipedes."
Natalie: "Huh...there were."

(Gah!  How did I end up with such a tomboy?!  When I was her age, my mom could dress me in white pants and by the end of the day they would still be pristine.  If I did that with Nat, hers would all be camouflage.)

If you look closely you'll spy one that has escaped from her pocket!  Ahh!

Natalie: "Dad, am I smart?"
Steve: "Of course you are."
Natalie: "Why don't you call me a genius?"


Natalie: "Mom, look what Noah gave to me!"
Noah: "No, I didn't.  You just grabbed it out of my hand."
(Hmmm...I guess Natalie is a believer in 'possession is 9/10th of the law')


Natalie: "Mahhhhhhmm why did you cut my toast in pieces?"
Me: "I don't know...I cut it in fours like a princess would eat it."
Natalie: "I don't want it.  I don't like it."
Me: "Natalie, it's still good."
Natalie: "No it's not."
Me: "It still tastes the same."
Natalie: "No it doesn't."
Me: "What do you think it will taste like...bananas?" (knowing she loathes them)
Natalie: "No...It will taste pointy!"

Happy Day! Camp Begins

It's a great day...or should I say happy day, here at our house, as today marks the first day of Camp Happy Day for Noah.  He's super excited and I am, too!

It's been a rough three weeks.  I've been running myself ragged taking the kids to a different St. Louis attraction almost every day.  I wasn't trying to win any Mom award, I was just trying to keep them happy -- especially Noah because he doesn't really have any friends. And, although school isn't his favorite place to be, it provides him with a routine and allows him to play alongside kids his own age who know him and are familiar with his quirks.

Camp Happy Day not only gives him a routine, which he craves, it also provides a safe place for Noah to be himself without ridicule.  Since this is his 4th year attending camp, he knows what to expect and is looking forward to making some friends.  For me, camp provides peace of mind that Noah will receive the academic instruction he needs to keep from losing skills he previously learned during the school year.

We could not have sent Noah to Camp Happy Day without Action for Autism's help.  If you do not know about Action for Autism St. Louis or Camp Happy Day, click here to learn how our story began.

Does he look happy for camp or what?!

 

It Takes Two

If it takes a village to raise a child...it takes two, sometimes three villages to raise a child with special needs.  Our story is no different; which is why we are so thankful for the wonderful team of caring people at Action for Autism St. Louis.  A not-for-profit organization dedicated to helping families obtain access to therapies and educational resources they may not otherwise be able to afford.  They believe a family's financial standing should not determine a child's life potential.

To read the speech I gave at Action for Autism's 1st fundraiser and how our story began with AFA  -- Click here then scroll to pages 6-7

Since 2009, Action for Autism has been helping our family send Noah to Camp Happy Day, a special summer camp for kids with learning challenges.  The camp has been such a blessing as it keeps Noah from losing skills over the summer break and provides him with a social outlet.  Camp Happy Day runs from 8:30-12:15 for six weeks.  During that time Noah receives speech therapy, reading and math support and learns the fundamentals of team sports.  In addition, he has the opportunity to shoot arrows at a target, climb a 30 foot ladder and the chance to practice his growing social skills on kids who may overlook his awkwardness.

To read our story about the positive effects of Camp Happy Day -- Click here then scroll to page 7

June 16, 2012 is the 4th Annual Action for Autism Family Fun Walk.  I realize that there are many, many great charitable organizations to support and it can be difficult to choose among them.  But, I can tell you with 100% certainty, the monies received by Action for Autism really do make a difference in the lives of children affected by autism.  Our family is living proof.  To donate to the Action for Autism Family Fun Walk click here and select "Family Fun Walk" in the campaign drop-down box.  Also, be sure to type "Felgenhauer" in the comments box. 

A special thanks to everyone who has supported our family in previous AFA Walks.

For more information on Camp Happy Day click here

Our family at the 1st AFA Family Fun Walk - 2009

 

Noah had the chance to hang out with Fred Bird while with his Camp Happy Day friends - 2009