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.

Everyone's a Comedian

I always knew I wanted two kids.  I dreamed of having the “million dollar” family arrangement of one of each.  When I found out I was having a boy.  I was happy.  My husband was ecstatic.  I know this is going to sound cheesy, but he actually said to me, “Honey, since you are giving me a son, I want to give you the moon!” 

Ok, so I should tell you, he told me this while we were selecting new kitchen floor tiles, and he may have only meant for the moon to extend as far as our kitchen, but I like to think he was referring to something much more existential. 

After Noah was born and as he grew, so did my anxiety.  I loved him, but worried there wouldn’t be enough of me to cover the needs of two children.  In addition, the stress of the therapies, the seizures and a 10% increased chance of having another child with autism, caused me to pause. 

However, after Barb came into my life, everything seemed more manageable.  She was like a valve that allowed me to release some of the pressure threatening to break my fragile vessel.  So, when Steve and I decided to expand our family, I had only one request, “Dear God, please give me something different, I just can’t handle more of the same.”

Natalie’s delivery, unlike Noah’s, was planned.  Her entry into the world came the day after we discovered the cause of Noah’s seizures and were able to control them with medicine.  She arrived without fever drama and epidural complications.  She was more than a pound larger than Noah.  Instead of making an enormous protest about leaving her comfy quarters; she let out a small meow-like cry, then quickly closed her eyes like she couldn’t be bothered.

It has been interesting to watch the differences unfold. 

When Natalie was about six months old, I remember a scene in which I was sitting on the couch, her in my arms with Noah by my side.  Her gaze was fixated on her four year old big brother, when Noah commented, “You know Mom, she kinda looks like a moon.”  It was true, unlike Noah who has a slim face like mine; Natalie inherited her Daddy’s perfectly round, German noggin.  I giggled to myself, recalling Steve’s moon promise.

At eight months old, we discovered Natalie had several food allergies, among them peanuts, tree nuts and eggs.  How curious…as Noah preferred a routine diet of cheesy eggs for breakfast and peanut butter sandwiches for lunch. 

Today their tastes in foods are from opposite ends of the spectrum.  While Noah would be happy with a steady diet (if we'd let him!) of processed meats and cheese, Natalie prefers raw veggies and fruit...the only exception being bananas.  Of course, bananas are the one fruit I can count on Noah to eat without complaint.

With Noah you know what to expect.  He likes to live by a playbook of his own creation.  Once a rule is set – it’s set in stone.  It’s easy to follow, as long as you have a copy of the book.  While Natalie prefers a life of what if’s.  If you ask her a question and give her two choices, her response is usually to come up with a new option.  

Noah prefers an ordered room and likes to play with one toy at a time.  (A mother’s dream).  He likes things to go back where they were and can spot a misplaced Lego guy instantly.  Natalie, on the other hand, likes to cook up Littlest Pet Shops in her kitchen while donning a coonskin cap and tutu.  Her room is usually a tidal wave of stuffed animals and Polly Pockets caught up in a twister of discarded tulle and plastic bugs.  If you ask her why, her response is usually why not?

Sometimes I wish I could have a “Freaky Friday” moment and see as she does.  She doesn’t ask questions like, “why is the sky blue?” She asks, “what do clouds taste like?” and “what does it feel like to be awesome?” She feels free to paint skies yellow and grass purple.  When coloring, she puts no pressure on herself to stay in the lines…she pretends there aren’t any.

Natalie has helped show our family what is possible when you stop worrying about the results and start enjoying the process.  She has also taught us that by not always doing what is expected, you open yourself up to receiving gifts you never dreamed were possible. Because of this, I’ve stopped listening wholeheartedly to what the experts say.  Instead I try to stay in the here and now, but it doesn’t always work.  When I think of Noah and his desire to become a Jedi; I can’t help but entertain the idea that Disney MGM Studios would be lucky to have a guardian of justice like him on their team. 

I’m also reminded of a time when Natalie was four and asked me, “Why do boys have a penis?” When I told her that’s just how God made them, she countered with, “Does God think he’s funny?” 

Today I can say with 110% conviction, “Yes, Natalie.  I think He does.”

The Power of One

About the time Noah received his diagnosis, God answered my prayers…actually I wouldn’t really call them prayers.  My convos with the Lord were more like a two year old having a fit over not getting a Hershey bar from the display case at the grocery aisle cash wrap.  Why God?!  Why?!  I’m hungry…just one!   But, before I go further, I need to give you the back story.

When I got pregnant I knew life would be different, but I wasn’t prepared for the sadness I would feel in losing my social circle of co-workers when I chose to work part-time from home versus full time in an office.  The difficulty was compounded by the fact that Steve’s car had lost the will to live and our mechanic had recommended a do-not-resuscitate order.  Noah, was just 6 weeks old, and since I had had an emergency c-section,  I wasn’t scheduled to start back for two more weeks.  Then came the call that my job was no longer secure…that is if I didn’t plan to haul my entire family on down to Sarasota, FL.  In the end I was able to work out a deal that allowed me to return to my post, but I would get to work from home and for only 20 hours a week.  The only catch was that this situation was temporary.  I had bought myself and the company, three months to find my replacement.

Our situation was aggravated further by the fact that 18 months before, my husband of good intentions, had tried to strengthen our portfolio by purchasing a rental property.  Unfortunately, we bought high, and soon after the bubble burst, and we were left with a second home that drained us and our bank account . I rationalized that since I was only going to be working 20 hours a week from home, I wouldn’t need a car because I'd be tied up with nursing and trying to fit in four hours of work each day.  Steve used my car to commute back and forth to work, and to school, and to the second job he’d taken to help us make ends meet. 

I was then left to cope with walking a line of having one foot in the working world and one in the SAHM world.  I didn’t have a solid footing in either place.  What I really needed was to create a new circle of friends and support which was no easy task without wheels.  I logged a lot of miles with my stroller and visited every park within safe walking distance from my home.  Every day I’d ask God…ok, I guess I should be honest here, I didn’t really ask – I pretty much demanded and swore and had a Super Size tantrum for him to give me one girlfriend who would listen and commiserate with me.  I was lonely dammit.

Enter…God’s perfect time line:

October 2004 – Steve and I joined a church (I had spent more than 15 years trying to convince myself I didn’t need one – I was spiritual.  That was enough, right?)  Though I was born and raised Catholic, we settled on attending services in a contemporary, Methodist one. 

December 2004 - Noah began having seizures.  A blessing in disguise, because it fast-tracked us to seeing a specialist.

January – March 2005

• We bought a second car!
• I am given the opportunity to work again with my former boss and forever friend, Ellen Rohr. 
• A space opens up in a Mom’s Day Out program allowing me to work without a toddler under foot, one day a week. 

May 2005 – Noah begins receiving therapy through First Steps and I begin my education in Sensory Integration Dysfunction and managing a very intense “sensory diet” with our son.

June 2005 – While taking a class at church, I meet a new mom.  Her name is Barb, but I’m so sleep-deprived and overwhelmed by Noah’s health issues, I don’t recall much passed her name.

August 2005 – I learn through the church bulletin that Barb’s family had experienced a death in the family.  Though I don’t know her well, I feel compelled to send a sympathy card.  A day or so after I sent the card, she called to thank me!  Who does that?  By this time, I wasn’t sure I wanted a friend as Noah’s behaviors and tantrums were growing as fast as he was and I was busy with work and working the “sensory diet plan” which involved:

·         Brushing and joint compressions -  10 times a day

·         Listening therapy  - twice a day, 20 minutes increments

·         Swinging therapy – twice a day,  15 minute increments

·         Systematic desensitization program –  twice a day, between meals

I wasn’t embarrassed by my son or his diagnosis, I told myself.  That’s because somewhere deep down (I don’t even think I consciously thought it) there was a part of me that felt if I just worked the plan, followed the therapist’s instructions, I’d get his issues licked and our lives back on track. 

What I thought would be a short, five-minute call, turned into a two hour therapy session.  I couldn’t believe my luck when Barb told me she was an occupational therapist.  What were the odds?  Our daily phone calls turned into frequent play dates and a sweet babysitting swap set-up.  It was amazing how easily the words passed between us and she cared for my kid like he was her own.  It was as if God had hand-picked her to drop in on my life when I needed her support the most…oh, yea.  Duh.

In a Kitchen Far, Far, Away

Though we own quite possibly every Star Wars figurine, game, ship and card ever stamped with George Lucas’ seal of approval, I haven’t yet found or maybe George hasn’t yet figured out a way to capitalize on the aroma that is Star Wars.  If he did, I can assure you – I’d be having my Galactic Republic spices of Glitterstim and Ryll from the planet Kessel overnighted. 

Noah may resemble my husband and I – but our little clone has taste buds that come from a galaxy far, far away from ours.

One evening while preparing Fettuccini Carbonara, Noah, six at the time, walked by the kitchen with his face all screwed up and puckered and demanded, “What is that smell?" 

“I’m just frying some bacon,” I innocently replied. 

“Well, I don’t like it,” he stated.  Then added, “I only like Star Wars smells.”

Well, not only was my kid cuter than an Ewok, he was a marketing genius!  Why in the world hadn’t the King of Galactic enterprises, not thought to expand his Star Wars merchandising empire to include a line of spices and sauces, like Ectoplasmic Hot Sauce or Eukamint oil?  Mealtime in our household would be much more pleasant.  Right about now I could be sautéing my veggies in Fleek oil instead of lame o’ olive oil that sends my kid packing.  As I considered this, I lamented that I didn’t continue my college art education.  Instead of listening to a chorus of complaints from a pint-sized Padawan, I could be sculpting meatloaf into Wookiees and teddy bear-like Ewoks that no Jedi in training could refuse.  

To read more adventures with Noah's food sensitivities, click "Life on the Ranch."

Life On the Ranch

When I see a Norman Rockwell painting of a happy family gathered around a dinner table,  smiles plastered on their faces, thrilled and appreciative of the three course meal the matriarch of the family has prepared, I just want to give a big, slobbery raspberry over the whole thing. What a crock! Norman obviously never had a family nor did he understand the workings of one. Maybe it’s just me, but I remember when I came to the cold, hard realization  my life would probably never resemble even a pinky nail's worth of truth as depicted by the artist of American culture.

Our son was almost three and had very specific tastes. He liked everything actually, except the stuff he didn't like. One of his therapists told me she’d been specially trained in Systematic Desensitization, a type of behavioral therapy used to help children or adults become more accepting of different textures and foods. I was skeptical, but willing to give it a try.

The first day she brought out a bottle of Ranch dressing and ceremoniously set it down on the kitchen table. Now, since I’m not a big Ranch fan, my little guy had never even seen a bottle, yet his “Jedi sensors” were up, and he was not going to take that move lying down. The sight of the bottle sent him into a blood-curdling scream. As time went on, he became more accepting of the bottle.  Soon, she was able to put a little on his plate, then a little on a carrot stick, then we moved to singing a little tune while walking the ranch covered carrot  up his arm. Eventually, over the course of a couple of weeks, we got him to put the veggie in his mouth, but this fish wasn’t biting. Instead, he hesitantly licked the manufactured garlic-infused goo from the carrot stick. I braced myself for a noisy protest that never came. Instead, his eyes got a faraway look. Then, his face broke out into a huge grin. It seemed my kid was in love… with Ranch.

His romance with salad dressing double-dated with Cheerios, peanut butter sandwiches and chocolate chip cookies. The therapist urged me not to give up. She promised me this was just the beginning, and that since he liked the Ranch, soon we’d be able to get him to try other foods with Ranch as the catalyst.

For months, I followed the program, but caseloads of Hidden Valley’s finest later, it was clear, we needed to try something else. I then spent the next six months trying to work Ranch out of our lives. It wasn’t easy.  There were times I thought maybe Ranch dressing was his destiny. I was ready to phone up the executives of Hidden Valley – Hey! Have I got a new spokesperson for you! There had to be a silver-lining to all of this, but at the moment I couldn’t see it…I couldn’t even smell it over the garlic that seemed to have perforated my senses.

To read more adventures with Noah's food sensitivities click "In a Kitchen Far, Far Away"

Hocus Pocus - Hurray! A Diagnosis!

"The greatest amount of wasted time is the time not getting started"

Dawson Trotman

And, boy have I spent a lot of time today staring at a blank screen.  I am a recovering perfectionist.  There is no cure for the malady that often plagues my being.  This blog is a therapeutic means for me to break the cycle of editing my life and share some of the enlightenment I have received from being blessed with raising a perfectly, quirky son and not-so-quirky daughter.   

When Noah was two and received a diagnosis of Pervasive Developmental Delay (PDD) I wasn't sad I was relieved.  Finally, I had an answer for why someone like me who had spent the better part of her teen years looking after babies and small children (and loving it!), who majored in Child Development  couldn't figure out why life with her son was extremely frustrating and tearfilled.  It wasn't like he couldn't talk.  He said plenty.  He could point and name animals and people and all sorts of objects...yet at 2 1/2 he had never said the word most parents dread from their toddlers, "NO!" A blessing most parents would say.  However, I had doubts that began when he was an infant, though I could never put my finger on it.  Doctors labeled my fussy baby as colicy and attributed his less than typical sleep patterns to acid reflux.  He was a persnickey little cuss.

He had his first seizure at 18 months.  As was his routine, Noah started his day at 4 a.m. However, when I picked him up something wasn't quite right and in a matter of minutes I knew something was really wrong.  His pallor was a sickly gray and then suddenly it seemed as if the life was being sucked out of him and replaced by a demon that violently protested his pint-sized living quarters.  While I set Noah on the floor my husband dropped to his knees and began praying...actually it was more like begging...begging God to spare our child. I numbly dialed 911 and within minutes we were on our way to the hospital.  Since Noah didn't have a fever, they couldn't label his seizure as febrile.  A febrile seizure is also known as a fever fit or convulsion brought on by a rise in temperature.  They are most common in children ages six months to six years. 

Thankfully, by the time we reached a doctor, Noah was coming around and seemed to be breathing normally and since I had had a few uncommon febrile seizures as a preschooler (99 temp would cause one), they believed I had passed this genetic quirk onto our son.  However, the next day he wasn't doing better and it seemed he had a virus or maybe an ear infection.  After spending an hour in the waiting room we were escorted to an exam room.  About 5 minutes after the nurse left, he began seizing again.  After a somewhat comedic performance in how the staff handled the situation (one nurse was crying while another tried unsuccessfully to get the oxygen tank working, as the doctor fumbled around -- later we learned none of them had ever witnessed a seizure....and they ain't pretty, but they were trained professionals!  Come on!  Act like one!) we found ourselves in another ER.  This time the neurologist on call recommended a 23 hour evaluation which gave us no answers just more questions. 

The last words the specialist said to me were, "I don't see autism." 

Outwardly, I thanked him and asked no further questions while inside my brain was screaming, "What the heck does THAT have to do with anything?"  It wasn't until later I would learn that up to 30% of kids with autism also have a seizure disorder.

We went on with our lives, but in the next couple of months I became increasingly worried about Noah's growing obsession of putting things in his mouth.  Now, I know babies learn about their world and explore by mouthing objects, but this was extreme.  We couldn't go to a park without hin trying to stuff fistfuls of mulch, dirt or gravel or whatever material available to him, into his mouth.  After it happened a few times I decided to have him tested for PICA.  I feared he had some sort of nutritional deficiency, however, the blood test came back normal. 

At his two year check-up, the doctor went through a developmental checklist and Noah was always within limits.  In fact, when he got to the question about the number of words he could say - Noah's 100+ vocabulary greatly surpassed the 20 word minimum.  However, the neurologist's utterance of the word autism continued to tangle my thoughts.  I sought the advice of my cousin who was knowledgeable on the topic as she worked as a teacher in an autism classroom.  After listening to my concerns and a replay of the exams, she said one thing that caused an "ah ha!" avalanche.  She asked me, "Ok, so he has 100+ words, but what kinds of words does he say?"  After listing 10 or so, I realized all of his words were labels.  He could say Mama, Daddy, dog, cat, ball, mailman, butterfly, but he didn't have one expressive word in his entire repertoire...like no, eat, drink, out, thirsty, hungry.  No wonder he was miserable.  He did not know how to express his wants, needs or feelings. 

The next day I put in a call to First Steps - an early intervention program in Missouri for children ages birth through three with developmental delays.  I requested an assessment.  Based on my concerns, they set me up with appointments to have an occupational therapist and speech therapist come out to the house on two separate occasions to evaluate my son. 

When the OT arrived, she immediately started asking me questions like, "Does he flap his arms?", "Does he stuff his mouth?"  "Does he bump into things?", "How much does he sleep at night?" "Does he walk on his toes?"

As she went through her checklist, I told her about my visit with the neurologist and she responded, "Really?...He really doesn't think it's autism?" 

Her comment left me a bit rattled, but I kept my cool. 

A day or so later, the speech therapist arrived.  She spent an hour playing and interacting with Noah.  As she finished and began packing up her things, she told me my son was just fine.  She further explained that all of his issues were behavioral and he was just controlling me.  Basically, she was telling me I needed to be more firm and consistent.  I thanked her, but was angered by her remarks. I wondered how all of this would play out with First Steps when there were two professionals with widely different opinions. 

As it turned out, the speech therapist's opinion trumped the OT's because in order to qualify he needed to have a 50% delay in two areas and since the speech therapist thought he had no delays - he was shut out.  I immediately put in a call to the neurologist and shared with him my concern for the kinds of words Noah possessed, as well as, the issues brought up by the OT.  He said at age two, Noah was so young.  He hated to give an diagnosis, but without one, we'd be gambling with losing valuable therapy time.  He didn't want to take the chance, so he diagnosed him with PDD, which I learned, trumps the words of the speech therapist. 

The next day it was actually a joy to ring up First Steps and say - "nah nah nah nah boo boo"...Ok, I didn't actually DO that, but I sure thought it!