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

Like Two Peas in an Escape Pod

On Friday afternoon after a particularly trying homework session, Noah began a downward spiral of negative self-talk.  From him I heard, “Why did God have to make me this way?”… “I have no friends.”… “I try to talk to kids, but they just don’t understand anything I say.”

My knee jerk response was to tell him that God made each one of us to have special gifts and challenges.  And, although I may not always know how to help him with his struggles, I promised to be tireless in my search to find someone who could.

That evening I contacted my friend to see if her son, Ross, could come over to hang out with Noah.  Although he is 2 ½ years younger than Noah, it’s a good match as Ross has similar interests and both boys fall somewhere on the awesome spectrum.

Ross was over the moon to see Noah…so much so he made him a card. On the inside of the card he wrote, "I really like you and I am playing the Wii and I like skating with you.  I really like spending time with you."

Front of Card

Back of Card

On the car ride over Noah said, “Ross, I organized my room to make it easier for us to play in."  

(Hmmm...not a typical way for a 9 year old to start up a convo, but Ross didn't seem to notice. And, by "I" I think Noah meant "my mom" but no need to get picky with the details.) 

A short time after we arrived at our place, Ross asked me if he could come back to our house in 7 days. 

(I think my heart grew 3 sizes.)

Although the two boys see each other very infrequently, they quickly began talking “LEGO shop” and then settled in on a game of R2D2 Trouble.  Next, they decided to play the Wii.  

Noah asked Ross, “Would you like me to put them in two rows or three rows?”  

“Two rows,” replied Ross.  

Apparently, Noah not only thought it necessary to remove each and every Wii game from the T.V. cabinet, he also believed it best to carefully place them into rows, prior to making a game selection.  But, the best part was that Ross was completely onboard with the protocol.

A few minutes into playing on the Wii, Noah announced that he was going to play in his room by himself and Ross didn't seem concerned at all.  However, I told both boys that they could spend 15 minutes doing their own thing, but then they’d have to find something to do together.  Both agreed without complaint and went on to enjoy a lightsaber duel and a few games of LEGO Ninjago.

I love it when a plan comes together.

Decisions...decisions

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.   

Just Because You Think It...Doesn't Make It So

Noah's favorite...and by favorite I mean first and only pair of swim goggles, stopped working properly.  The lenses had begun separating from the frames and water was seeping in.  My friend, Barb, gave me one of her old pairs to try.  When I shared the news with Noah this is how it went down:

"Noah, guess what?  Barb gave me a pair of swim goggles for you to use at swim lessons," I shared.

"NOOOOOOOOOOOO!" He protested.

"Honey, they are green goggles just like the ones you had," I explained.

"No, they're pink!" He refuted.

"Look Noah, these goggles are not pink.  They are green -- same as yours," I said as I presented him with the replacement.

"No, they are not.  They are pink," he argued.

"Noah, they are not in any way close to the color pink.  They are green," I challenged.

"No, they are not.  They are pink," he continued.

"Noah, go to your room for five minutes," I said

Surprisingly he went to his room without complaint.  After the time had lapsed, I told him to come out and look at the goggles again.

"Noah, what color are these goggles?" I inquired.

"I don't know," he grumbled.

"Noah, they are green," I belabored.

"I guess they are a little green," he admitted.

Noah is very black and white with his thinking.  He doesn't like surprises and doesn't like it when things don't fit in the box he has previously put them in.  In this case, he associates the tutu-coveting, American Girl doll-loving, Braun girls with the color pink and could not fathom (even when he saw the green goggles with his own two eyes) that they would wear or own anything that wasn't pink.  I gave him (and myself) a time-out because sometimes all it takes is a few minutes for him to re-organize his thoughts and let his emotions catch up to his brain.

Today's incident reminds me of the time when he refused to take Girl Scout cookies in his lunchbox.  He thought the cookies were only meant for girls to eat and he was afraid that the boys at his lunch table would make fun of him.  Too bad I didn't let that one stand...I could have had all the Thin Mints to myself!  Now that alone should prove just how much I love this kid.

Noah sporting his "pink" goggles.

Old Enough

While helping Noah get ready for bed I noticed him looking at me very intently.

Me: "What's up, Noah?"
Noah: "Mom, I keep looking at you and I keep thinking to myself that you just look so old."
Me: "Thanks, Noah."
Noah: "No, really...I mean it. You just look OLD."
Me: "I get it Noah. Really I do."
Noah: "No, I mean seriously...I LITERALLY mean you do!"

Steve interjects as I exit the room and go pour myself an adult beverage since I'm now quite sure I'm old enough to do that.  Sigh...I'm glad the incident happened with me and not with someone outside our family.  Noah wasn't trying to be hurtful...only factual and I think even helpful.  Oh well, just add it to the growing list of social faux pas that occur when raising a child on the Autism Spectrum.

Whirlwind Weekend

Early Saturday morning our family participated in Action for Autism’s 4^th Annual Family Fun Walk. Though after dragging Noah for the better part of two of the three miles, I would have to say “fun” is open to interpretation.  On the upside, the pancake breakfast sponsored by The Original Pancake House was delicious.  And, Silly Jilly and Joe the Juggler were on hand to turn my kid’s frown upside down!    Thanks so much to all our friends and family members who sent in donations.  Your support is helping to make our child and many more very happy. 

"Mom, we're finishers!" cheered Natalie.

Juggler Joe juggled machetes and flaming torches sometimes while playing the harmonica!

Natalie ordered a bumble bee while Noah opted for an alien spaceship.

We are on week 2 of Camp Happy Day and so far so…GREAT!   Noah was happy to see some familiar faces in his group.  And, I’m thrilled with Camp Happy Day’s line-up for the summer.  Not only is Noah receiving weekly speech therapy, math and reading support, but Camp is once again providing him with twice weekly swim lessons.  Swimming is fun and serves as occupational therapy for him.  If you want to know more about Camp Happy Day for your child or if you are interested in volunteering next year, please visit their website here.

My sister, Renee, is in town from Colorado with her three kids.  Considering it's been a year since we last saw them, we've been trying to cram in as much cousin hang time as possible.  The first day they pulled in we had an impromptu water balloon fight.  Seriously, the best dollar I ever spent.  It came with 100 balloons and a doohickey to attach to your water spigot. Thank you Target! 

Hayden didn't see it coming...but he sure felt it!

Hayden gets hit with a good one from his sister, Olivia, while Ella gets more ammo.

With my sister and her family in town, we organized a belated birthday party for Noah.  On Sunday we gathered grandparents, siblings and cousins to join us at our community pool.  We ate pizza and homemade chocolate chip cookie ice cream sandwiches.  Though, I also made a cake…as it didn’t seem to matter to Noah that I had already made him an R2D2 cake on his actual birthday (May 30^th)  He wanted R2D2 for his party.  So, I gave in…but I went easy on myself and used an R2D2 figure in place of one created from flour and sugar.  The bottom line -- he loved it anyway and was pleased with the result.  Phew.

R2D2 cake take 2 - yellow cake covered in chocolate ganache and  decorated with  chocolate buttercream

Checking out Noah's loot - Spy Gear that included a recording wire.  Great, just what a Mom needs.

Hayden takes a spin on the tire swing.

My beautiful SIL, Alicia and niece, Ella B.

"Just Jack" (with jazz hands) LURVED the slide.

 

Natalie gets a lift.

Miss O on the slide

Mr. Hamster

Ice cream sandwiches were a hit!

He loves his Mama!

Ella shows off her gymnastics skills

Hayden hot doggin' it on the diving board.

Dad putting his best face forward. 

Nat gives her Grandma Mary a squeeze.

Sunday also marked our 10th wedding anniversary.  But, with all the hoopla of entertaining guests, there wasn't much time for Steve and I to celebrate or even recognize this milestone.  Ten years is quite an accomplishment considering some of the roadblocks we've been up against over the years.  During the course of the day, though, we barely even spoke to each other as we were wrapped up in either taking care of the kids or acting as delightful hosts.  However, after it was all said and done and the kids were in bed and the party paraphernalia put away, Steve turned to me and said, "You make me want to be a better man."  And, so although Steve agrees that I am always right (or at least comes to that conclusion eventually) I think that in this case, I will concede and let him be right this time. When Steve throws out gems like that - it almost makes me forget about the times I want to put him (and the kids) in a headlock.   

Thank you God for blessing me with a loving and thoughtful husband and two, awesome kids.

Can You Be More Specific?

Convo with Noah:

Noah: "Mom!  Today was Josh's birthday."
Me: "Cool.  What did he bring in?"
Noah: "Nothing.  He brought nothing."
Me: "Oh...I just thought that since you mentioned that today was Josh's birthday that maybe he brought treats in to camp."
Noah: "He did.  But, you didn't ask me if he brought in treats."
Me: (Sigh) "You are right.  I guess I should have been more specific."

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?!

 

A Star is Born

Yesterday, the kids and I headed over to Tesson Ferry Library's Summer Reading kick-off event.  Prior to leaving, I listened to Noah tell me umpteen times, how much he did not want to go.

"I just want to stay home all day," said Noah.

I was familiar with this song and dance of his, as it occurs whenever we go somewhere new.  When he was younger, the routine was more volatile and included tantrums and head-banging.  Over the years, I've learned that the less I say, the better.  I simply give him the facts - the who, what, when, where's, and make sure he has a favorite toy or book with him for the car ride.
Jason Vaughn, a professional balloon artist from Higher Hope Balloons, provided a fun, interactive show. The impromptu stories he spun, transformed kids into actors with the help of creative balloon props.

Noah was chosen to play the role of dragon in a one of the skits.  Within seconds of placing the airy costume upon his head, his apprehension turned to giggles.  He was on stage and having a good time.

Prior to leaving the show, Noah made a trip to the bathroom.  Upon exiting he said, "A boy came up to me and asked if I was the dragon.  I told him yes.  He told me he liked it when I fell down and played dead.   Mom...I'm famous!" announced Noah.



A brave knight faces Dragon Noah.

Keepin' It Clean

Oftentimes in our house, Natalie assumes the role of older sibling.  So, when I glimpse moments of Noah acting like the true big brother he is, I get excited.

Yesterday, I walked in on this conversation between Noah and Natalie:

Noah: "I'll teach you all the bad words,"

Natalie: "What are they?"

Noah: "There's hate and stupid," he says as he ticks them off on his fingers...Mom, what other bad words are there?"

Natalie: "You're not cool?"

 

I told the kids I needed to get the laundry from the basement.  I knew if enough time lapsed that they'd be onto something else and I'd be free from answering their questions.  

Anyone who knows me, knows I do a LOT of laundry...not because I like it particularly, but because the walk to the basement (my swearing haven) gives me a few extra minutes to calm my Mommy self down when the kids are testing my patience.  Needless to say, this has resulted in lots of clean clothes and mouths!

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

Stupid is as Stupid Does

Dear Eight Year Old Boys at Tilles Park:

Today you missed out on an awesome opportunity to get to know a really funny and creative kid.  Noah is NOT stupid, however, your choice to use that word to describe him only reflects poorly on you.

Although I will spend the remainder of the afternoon trying to erase your hurtful words from his thoughts, I will also pray that the next time you meet someone different from you that you'll show a better side of yourself than I witnessed today.

Good things come in small packages...but, really good things come in packages that don't quite fit inside the constraints of any box.

Sincerely,

Noah's Mom
a.k.a. Master Windu's Mom
     

Wanted

Bubble Large Enough to Safely House One Very Cute, Loveable Boy
Money is No Object

Please Call 1-800-SERENITYNOW

 

Potty Train Wreck

Prior to boarding the train, I had read countless articles and had sought the advice of several experts.  Others, who had gone before me, had warned that the trip can be long and difficult.  I hoped my preparations would make it as painless as possible and a positive experience for us all.  I would soon learn that sometimes no amount of planning can prepare you for the road ahead.  Our journey would have more stops and detours and breakdowns than I could have imagined.  Thank goodness I didn’t have a crystal ball when we started, or else I don’t know that I would have been able to face the challenges ahead. 

I could write a "War and Peace" sized book on the topic of toileting…most of it would be about war, but thank goodness I have almost found peace.  I won’t give you a mile by mile replay, instead, here are some postcards received while riding the rails.

 

Dear Mom:

I love you, but why are you suddenly interested in me using the toilet?  The diapers work just fine.  I pee and poop in them and you change me.  I see no reason to make changes to our arrangement. 

Love,

Noah (age 3 ½)

Dear Mom:

I thought I made it clear to you that I do not like changes.  Setting timers every hour seriously interrupts my play and makes me very angry. 

BTW: I know there’s no potty fairy changing the color of the toilet water.  It’s just you trying to come up with a creative way to get me to walk into the bathroom.  There’s nothing magical about putting blue food coloring in the toilet bowl and having me pee to change the color of the water.  There is only science.

Also, I’m sorry I threw my shoes in the toilet and locked you in the basement, but I’m trying to get it through your head… I despise changes to my routine.

Love,

Noah (age 3 ¾)
P.S.  I only like Thomas the Tank Engine trains. Please keep your potty trains to yourself.

 

 Dear Mom:

Please stop talking about treasure chests and stickers.  I don’t like stickers! 

And, Diego underwear is grossly over-rated.  Luvs are much more convenient and more absorbent than cotton. 

Can’t you find a better use of your time then to torment me with timers and your irritating potty songs?   I guess you enjoy cleaning up the floor every 30 minutes.  

Love,

Noah (age 4)P.S. Did you like the Irish jig I did in the puddles today?

Dear Mom:

I had a great time at Grandma’s house.  Since I don’t get to see her often, I haven’t had a chance to create a routine at her house, but I still had fun. 

I played outside in her garden and she let me eat chocolate chip cookies for breakfast.  I peed in her potty, but when I come home on Sunday do not expect me to use your potty.  I don’t do that at home. Home = Diapers

Love,

Noah (age 4 ¼ years)

Dear Mom:

Why do you insist on reading me a story featuring photos of me using the toilet?  And, now Dad is creating a video of me and the potty?  Hello! I know how to use the toilet, but oftentimes I don’t feel like I have to go. 

Remember when I was two and you found me purposefully slamming my fingers in the door…again and again.  Well, it’s kinda like that.  I don’t feel things the same way you do.

I’m not doing it on purpose – ok, well, not all the time anyway.  I’ll admit, sometimes I just don’t want to go because I just went 30 minutes ago.  Why do I have to go all the time?  It’s so frustrating!

Love,

Noah (age 4 ½ years)

Dear Mom:

I know my birthday is just around the corner.  I’m excited for my party and presents, but I don’t want to be five.  I finally got used to telling people that I’m four, and now I have to remember a new number.   Stop telling me I’m getting to be a big boy.  I don’t want to be big.  I just want to stay little. 

Love,

Noah (age 4 ¾ years)P.S. I’ve noticed when I sit on your lap, that there isn’t as much room as there used to be.  Are you shrinking?

Dear Mom:

Yesterday the kids at school made fun of me on the playground.  They called me diaper boy.  That made me mad.  I wasn’t even wearing diapers…I was wearing a pull-up.  Sheesh!

Love,

Noah (age 5 years)

Dear Mom:

I’m so frustrated…I know you are, too.  I go to the bathroom all the time at school.  I have a routine.  I always go before reading and after math and before lunch and after recess.  Maybe I would have fewer accidents at home if you would teach reading and math to me on the weekends.  I always go before reading and after math.

Love,

Noah (age 5 ½ years)

Dear Mom:

Thanks for taking me to see a specialist.  I know we are both super tired of living our lives around the bathroom.  At least now we have a name for what has been aggravating the issue -- Lower urinary tract dysfunction.  I’m not sure what it means, but I hear the physical therapist I’ll be seeing uses video games to help.  I love video games!  I wonder if she has Star Wars the Complete Saga.

Love,

Noah (age 6 ½)

Dear Mom:

Wow!  The appointment with the physical therapist was kinda weird, but also kinda cool.  She attached special cords to my body that were then hooked up to a computer.  I had to pay attention to my breathing and had to squeeze or release my muscles just right to get the video games to work properly.

Love,

Noah (age 6 ¾) P.S. Thanks for not giving up, but Star Wars games are much more fun.

Dear Mom:

I like the new vibrating potty watch you bought for me.  It looks like something a spy would wear.  It’s great because now I never need to pay attention to external cues like when a class begins or ends – I just go when the watch tells me. 

You are no longer the boss of me…the watch is!  But, don’t ask me to go before getting in the car for a long ride.  I can only go when my super cool watch tells me to go.

Love,

Noah (age 8 years)
 

Although our story is not unique, it was made more complicated by the physical issues we discovered late in the game.  Unbeknownst to us, Noah suffered through muscle spasms and his frequent leaks were due to his inability to fully empty his bladder or hold more than two ounces of fluid at one time.  In our case, the specialists believe that when we began toileting, Noah had very weak muscles which caused frequent accidents, however, later he developed a routine of holding his muscles too tightly which caused the spasms, and an inability to empty.  Today, we  have rid ourselves of all devices and use a combination of frequent, routine bathroom breaks and medication to keep his confidence strong and healthy.

I hope you have found the information I’ve presented as meaningful and that it helps provide a greater sense of compassion for families who are going through it, but are too embarrassed to share their story.  In closing, I want to leave you with three points to consider:

1.       One trait commonly shared among children on the autism spectrum is a high level of anxiety.
2.       Controlling one’s environment is a self-coping means to reduce anxiety.
3.       There are really only 3 things a child has control over –
a.       Eating – how much and what they choose to put in their mouth
b.      Sleeping - how much or when they choose to fall asleep
c.       Toileting – where or how often they choose to void

Below are some good resources:
http://autism.lovetoknow.com/Toileting_Issues_with_Autism
http://raisingchildren.net.au/articles/autism_spectrum_disorder_toilet_training.html/context/1167
http://www.behavioradvisor.com/Autism&Toileting.html

Thoughtful Spending

When Noah began receiving therapy through First Steps, I didn’t realize I would become a therapist myself.  Although he received speech and occupational therapy once a week, I was expected to continue with his treatments the other six days they did not visit.  I took my job seriously and followed their directives to the letter, sometimes at the expense of my own sanity.  Noah hated the brushing sessions, and the listening and swinging therapies sometimes made him sick to his stomach.  But, I wasn’t willing to miss even one day of treatment.  I felt Noah was counting on me.   

There was a moment though, when I realized I had stopped thinking of myself as a mom.  The woman who had brought home a bundle of joy, swaddled in dreams and good intentions, had become someone I no longer recognized.  My thoughts, my actions, and my words were always focused on one thing – keeping the gap between him and his peers from spreading further.  But, many times I treated the race like a sprint, when what it really is, is a marathon. 

Today, I try not to get too wrapped up in doing everything; instead, I’ve learned to temper the therapy with allowing him to just be a kid.  More importantly, I’ve learned to give myself permission to just be his mom.    Now I can spend more time enjoying the finer points of mothering; like reminding him to make his bed, take out the trash, and not gloat too much over beating me at Mario Kart.

Oh, the Places I've Been!

When I graduated from college, I took Dr. Seuss’, “Oh, the Places You’ll Go!“, to heart.  And, “with brains in my head and feet in my shoes,” I returned the ring my parents gave me at graduation and bought a two-piece, Samsonite set, along with a one-way ticket to San Juan.  I decided to postpone graduate school and instead, accepted Carnival Cruise Line’s job offer as a child counselor.  Oh, the places I went!  I swam with stingrays in Grand Cayman, climbed the Dunn’s River Falls in Jamaica, canoed through the rain forests of Dominica, went horseback riding through the papaya fields of Grenada and more.  Yet, I wasn’t prepared for the trip my psyche would take when I entered Motherhood. 

Early on we discovered Noah had two speeds – high and off.  While other babies’ speakers went to 10,  Noah’s rocked a Spinal Tap's 11.  As a newborn, it seemed the only time he wasn’t crying, was when he was plugged into me…literally.  He suffered from acid reflux and frequent ear infections, so sleep was elusive for all of us.   However, when he was just a couple months old, we discovered Noah had a hankerin’ for Hank Williams.  One day Steve started serenading Noah with an old Williams’ song called, “Roly Poly”.  A few bars in and Noah’s rigid body began to relax and his cries began to quiet down.  The twangy tune soon became our first defense in stopping the screamies.  As time went on, the results would become even more dramatic.  That one song kept our ears from bleeding, but the jury is still out on how it affected our brains.

When Noah was about six months old, we decided to take a trip to Columbus, Indiana to visit Steve’s college roommate.  It would be our first long haul trip with the baby, but everyone told us – it’ll be so easy.  Babies just go right to sleep in the car.  Something about the hum and rhythm of the engine just puts them out.   Trouble was, no one had told Noah that.  And,  because road trips hadn’t been added to his playbook, we were in for quite a ride. 

The first 30 minutes we tried to wait him out.  Surely, the rhythm of the car and strenuous exercise he was putting his lungs through would tire him out.  Wrong.  Finally, Steve broke down and started belting out Noah’s favorite ditty.  While my body sat in the passenger seat heading east on highway 46, I’m not sure where my mind went after the first hour.  But, every time Steve would stop, Noah would amp back up.  By this time, Steve’s voice was beginning to crack so I took over.  Steve and I continued our singing relay until we reached our destination.  All I could think was, where in the heck is Scotty when you need him?  Beam me up!

Today, Noah still loves music and thankfully his tastes have expanded beyond "Roly Poly."  He has an ear for sounds, but not always for the actual words .  Like when he sings Katy Perry’s, “Hot n’Cold”.  The words I hear from the backseat are, “You’re hot in your clothes.  You’re up in your nose!”  Or, when he’s channeling Ke$ha with her song, “Blow” and instead of singing “It’s time to kill the lights.”  Noah’s singing, “It’s time to kill the lice…”
Hmmm…I wonder how Weird Al got his start?

For those of you curious about "Roly Poly".  Here it is for your listening pleasure.