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Autism Mom

Our Autism Journey Began in the Kidneys (Part Two)

Konrad and I ended up staying 3 days in the hospital.  I never left his room.  I’m convinced dry shampoo and face wipes were inspired by moms who endured such stays.

 

Mr. Community Hospital Doctor referred Konrad to Mr. Kidney Specialist at DeVos Children’s hospital.  The new doctor ordered a VCUG. I wrote that down to google it later.

Of all the tests, I learned to hate this one the most.  A VCUG, or according to doctor Google, a “voiding cystourethrogram, is a minimally invasive test that uses a special x-ray technology called fluoroscopy to visualize your child’s urinary tract and bladder.”  That sounds simple.  What it *really* means is that they insert tubes (without anesthetic) into your son’s penis.  The tubes insert a dye that can be seen on ultrasound screens.  Then they wait for your son to try to urinate.  When they attempt to urinate, the dye allows the doctors to see and record the function between the kidneys and the bladder.

Once again, they asked if I wanted to stay with him for the procedure.  I looked at them in complete disbelief.  I could not imagine leaving my infant.  He was only 9 weeks old.  I’m not sure if my presence helped him at all, but I was NOT going to leave him. I held my baby Konrad down as he screamed in agony.  His little face scrunched and writhed in pain.  I held his hands and I sang to him.  I sang “Jesus Loves Me” over and over. I’m not sure if I was trying to convince my infant or myself.

After the test, they handed me a CD of the kidney images to take to Dr. Kidney Specialist on the other side of the hospital.

I walked through the pedestrian walkway over Michigan Avenue that connected the children’s hospital to the urology wing.  I held him against me as I walked, pressing my hands against his back and praying that healing could pass from my hands to his little body.  As I crossed that walkway, I felt both eagerness and dread.  I looked at the cars below passing under us.  Just cars passing by.  Cars on the way to work, school, groceries, and countless other mundane tasks.  I wondered how many mothers with sick infants and children had walked that bridge with cars passing below.  Cars passing below not realizing just above them were women like me pleading with the universe for a good answer on the other side of the bridge.

There weren’t good answers on the other side of the bridge.

As I sat in the waiting room, I decided Dr. Kidney Specialist needed an interior decorator.  His office had grey walls and grey striped carpeting.  It was devoid of any toys, children’s books, or any sign that this man worked with children every day.  It was as if the office itself was designed to suck any remaining hope you had as you walked through the door.  It looked like despair.

The nurse called us back to the room. As she was leading us to the exam room, she asked me “So how are you doing?”  I realize this is a simple question on any other day, but on that day, I didn’t know how to answer.  Do people visit urologists on routine issues with infants?  I mean are there moms out there that just ask for preventative infant check-ups with the kidney specialist? The honest answer to how I was doing that day would have been “desperately numb with a growing sense of doom”.  I decided to go with “fine, thanks”.

Inside the exam room, I sat alone again with my baby Konrad.  Holding him, rocking him, and praying.  It seemed so silly to pray.  The answer was already on the CD we got in the ultrasound room.  What was I praying for? Peace? Strength? Guidance?  I wasn’t sure, but I also didn’t know what else to do.

Mr. Kidney Specialist finally arrived and asked for the CD.  He put the images on a screen and pointed to both Konrad’s kidneys.  He said calmly and without affect stated, “He has damage in both his right and left kidney’s.  The left is in worst shape than the right.”

I once again summoned strength from the tips of my toes. I would not cry.  Deep breaths. I said, “Okay, so what do we do?”

He flatly said, “There’s nothing we can do.  Kidney damage is forever.  Once you get kidney damage, there’s nothing we can do to fix it.  He also has kidney reflux. Grade 5 kidney reflux.  That means the valves between his bladder and his kidneys do not function properly. Because the valves don’t work correctly, they allow urine to roll back from the bladder to the kidneys.  The force with which this happens on Konrad is so strong that the tubes actually twist and prevent the kidneys from emptying again. This is why they are swollen.”

He further explained that Konrad would need to be on baseline antibiotics.  We would need to take him to the hospital anytime he hit a fever of over 100°. We would redo the VCUG in 6 months to see if any it got any better.  Basically, we had a diagnosis, but he was too little to do anything about it.

I walked back over the bridge on Michigan Avenue with Konrad in my arms.  I was tired. Alone.  I wasn’t sure what I was supposed to think or feel.  It wasn’t good news.  But then again, many parents get worse news everyday.  I told myself I should be thankful…I wasn’t thankful.

I’ve driven down Michigan Avenue many times since that day. I’ve seen the mothers pushing strollers or carrying infants in their arms.  I never drive under the pedestrian bridge without saying a prayer for the mothers walking above.

 

Mommy Confessions

I registered my son for karate to get a “mom break”…Now he’s a Black Belt.

Mommy confession time.  When I registered my son for karate at the age of 6, I never thought he’d be an 11 year old black belt.  It’s not that I thought he couldn’t accomplish a black belt.  To be completely honest, it never even crossed my mind.

In January 2011, Gunnar’s friend invited him to attend Standale Karate on a “Bring a Friend Night”.  Now up to this point, we had tried T-Ball and I watched him play tic-tac-toe with himself with dirt in the infield and pick dandelions in the outfield. We tried soccer and he came home from practice sobbing because he would never be able to kick a ball with the inside of his foot like his coach had instructed.  So I had honestly just accepted that maybe sports weren’t Gunnar’s thing.  No biggie, he was 6 years old.  Certainly plenty of time to find his passion.

So on that January night when I took Gunnar to Standale Karate for the first time, I also expected it to be the last time.

However, much to my surprise, Gunnar loved karate.  The instructor, Master Rick Heath (now Grand Master Rick Heath) had a playful yet authoritative approach with the kids.  He was one of those men with seemingly endless patience and a gift for teaching children. He instinctually understood Gunnar and how to methodically help him with the various blocks, kicks, and stances.  Gunnar instantly loved Master Rick.

After class, Gunnar asked if he could come to karate again.  Let’s be clear…Gunnar had *never* asked to repeat a sport before.

I inquired with the Director, Jan Heath, on the cost of the classes, uniform requirements, times, dates, etc.  She told me it was a flat monthly fee with no contract required.  We would also be required to purchase a uniform from the school for approximately $30.

Confession moment.  Here’s what I heard from Jan: “For a small monthly fee, plus the cost of uniform, we will give you a mom break up to 4x per week”.  At that time, my husband, Mr. Businessman traveled overnight every week for work, leaving me alone with two young boys 6 and 4 years old.  I was also working a full time job at the Meijer Corporate office.  I was functioning as a single mom while working a full time job with two young children.  I was flat exhausted.

IMG_1958
Gunnar – First Night in Uniform

I looked over at my little Konrad and saw him playing along side the other younger kids that had brothers and sisters participating in the class.

I couldn’t sign Gunnar up fast enough.

For a small monthly fee with no contract…you are going to occupy BOTH of my children?!  Not only that, this is like a good thing right?  I mean, I’m not dumping them with a sitter…I’m doing something constructive here.  Gunnar’s getting exercise and maybe earning a couple belts, which is good for self-esteem.  Konrad’s making some new friends, no small feat for him.  And for up to 4x per week, I can enjoy watching my son in karate, or play Angry Birds on my phone, maybe do some of their clothes shopping on-line, text my friends, etc.  I can generally chill for up to 4 hours a week.

Mommy. Lotto.

Fast forward to March 2016.

IMG_1890
Gunnar & Grand Master Rick Heath

Gunnar actually stuck with karate and Master Rick.  They’ve formed a bond that has forever shaped the man Gunnar will become in all the right ways.  Master Rick taught him discipline, respect, determination, precision, and most importantly, the unconditional love of a male figure.  He also taught him it’s okay to have fun and be determined.  I’ll forever be grateful that God brought Rick Heath into our lives.

Gunnar successfully participated in multiple karate tournaments throughout this time in karate. He medaled in the 2015 Sate Games of Michigan Summer Games as well as the 2016 Winter & Summer State Games of Michigan.  He also competed in the 2015 State Games of America, earning 4th place in Weapons and 6th place in Forms.

In many ways between the relationship with Rick Heath and the confidence he built at tournaments, Gunnar found himself in karate.

Now on March 19th, 2016, Gunnar was 11 years old and testing for his 1st degree black belt.  The test was 5 hours long and juried by a panel of high ranking black belts including Grand Master Rick Heath.  His co-testers included adult 3rd, 5th, and 6th degree black belts.  To prepare for the test he had committed to 3-4 practices per weeks over a six month period and numerous private lessons all while adjusting to middle school and participating in travel soccer (refer to second paragraph for that touch of irony). Also, he was sick with the flu the whole week leading up to his test.

But he did it!  Gunnar earned his 1st degree black belt.

And you know what? It doesn’t really matter why I registered him for classes back in 2011.

Jeremiah 29:11 “For I know the plans I have for you…plans to prosper you..plans to give you hope and a future”

 

 

*The professional pictures of Gunnar were taken by Angela Lawson.

She has a Facebook page of all her wonderful work: https://www.facebook.com/aglphoto/

Her website: http://www.aglphotography.net/wp/

 

Uncategorized

Our Autism Story Began in the Kidneys

On July 30, 2006 at 5:18am, my joy arrived in the morning.  A beautiful, healthy baby boy. His eyes were blue like sapphires.  They say all babies have blue eyes, but his were BLUE.  As I carefully unfolded his blanket and counted the toes and fingers, I gasped.  He had 10 perfect, long skinny fingers and 10 long skinny toes. I told him then, “Baby, you have the fingers of a musician. And oh those toes.  Grammy will call those worm toes.  Just like mama.”

IMG_1873Gunnar arrived at the hospital later that morning.  Just 28 months, 6 days older.   He squealed with joy to meet his baby brother.  To this day, I think when he met Konrad, he thought we got him a present.  He kept saying “Baby, baby for me!  You get me baby!”

We brought my baby Konrad home and my heart was full.  I had beaten the odds.  After the miscarriages.  The uncertain months of pregnancy, drugs to stop labor, bedrest. Pre-eclampsia.  The tremendous swelling.  Damage to my kidneys. It was all worth it. I had successfully carried and delivered two healthy baby boys.  I was full of joy and gratitude.

Then came September 17, 2006.  Something was wrong.  My normally easy peasy baby was suddenly crabby.  No matter how much I rocked him and sang to him, he seemed unable to get comfortable.  My baby who always smiled, couldn’t stop fussing.  I took his temperature and it was 101.8…they say anything over 100.4 in a baby is cause for concern.  I told myself he had an ear infection.  I headed to Zeeland Hospital Urgent care to get him some antibiotics.  There was a Notre Dame game that day…so instead of bothering Mr. Businessman with my concerns, I took Gunnar to the hospital with me.

We arrived at the hospital at some point late that afternoon or early evening.  I honestly don’t remember anymore.  The doctor immediately checked Konrad’s ears. I waited expecting to get an ear infection diagnosis, a prescription, and be on my way home.  I was an experienced mom now.  I knew the drill.  But…nothing was wrong with his ears.

Okay, I told myself, no biggie.  Mr. Doctor wanted to do a chest X-Ray.  Of course! Gunnar had pneumonia at 3 months.  I bet Konrad will be the same. A little scary, yes. But, not my first day as a mom.  They will do the chest x-ray and give us meds.  We will be home before we know it. I told little Gunnar that they just had to do some tests on baby to make sure they knew the right medicine to give him.  Don’t worry about your baby Gunnar, the doctors will fix this all soon.  But his chest x-ray was clear.

At this point, Mr. Doctor gets very serious.  Too serious.

We need to find someone to watch Gunnar because they need to do more invasive tests on Konrad.  It wouldn’t be appropriate for Gunnar to be in the room.  Oh…okay.   Well certainly whatever Mr. Doctor thinks.  I call home to Mr. Businessman.  He doesn’t answer because there is a Notre Dame game on that day.  He doesn’t like it when we interrupt his games.

I have no one else I think I should bother with just an infection…my mom.  Oh no, she has just had treatment for varicose veins.  Her legs are wrapped and she’s not supposed to drive.  I call Mr. Businessman again.  No answer.  I don’t know what to do.  I call my mom.  She comes immediately.  She takes little Gunnar into the waiting area just outside the emergency treatment room where I stand over my Konrad.

Mr. Doctor explains that something “out of the ordinary” is causing Konrad’s fever.  They will need to do a spinal tap.  I feel my word come apart piece by piece. My world has become pixelated. Mr. Doctor asks if I want to stay with Konrad while they do the procedure.  I think of punching Mr. Doctor.  How could I possibly leave my baby right now?  I am not sure how I’m going to get through this, but I will not leave him.  I summon all the inner strength I can find…I swear I am pulling strength from the tips of my toes and the roots of my hair.  But I am NOT leaving my baby.

Mr. Doctor asks about the father’s consent.  But Mr. Businessman is still not answering the phone.  Mr. Doctor doesn’t understand it is a Notre Dame game day.  Mr. Doctor insists that we need to get dad to the hospital.

I am dressed in a surgical mask, hair net and gown. I help the nurses hold down my little Konrad.  My mother stands outside the doors with Gunnar in one hand and a cell phone in the other.  I begin yelling through the door the phone numbers of my neighbors.  I don’t even know what numbers they are at this point.  I’m shouting numbers through the emergency room door that come to my head.  I’m shouting numbers, while I’m holding my 7 week baby down on an emergency room bed.  While Mr. Doctor performs a spinal tap on my little Konrad.

The spinal tap is clear.  My baby.  My heart.  My little Konrad is diagnosed “failure to thrive.”  They started the first IV of general antibiotics.

IMG_1870

One of the phone numbers I yelled through the emergency room door turned out to be my next door neighbor.  Sarah.  I didn’t know her well.  She gave Mr. Businessman haircuts.  We shared a beach across our backyards.  She was nice and beautiful and outgoing.  I’ll never know why her number was one that came to my brain as I was holding down my baby that night.

She was and is a die-hard Notre Dame fan.  If my brain had been fully functional, I would never have given her number.  Mr. Businessman had taught me it is not appropriate to bother Notre Dame fans on game day.

Yet Sarah took my mother’s call that day during the Notre Dame game.  As I she tells it, she burst into our home.  Looked Mr. Businessman square in the face.  She kept eye contact as she stomped to his TV and turned it off.  She pointed her finger and said, “Get. Your. Ass. To. The. Hospital.”  Mr. Businessman would later tell me how rude she had been.  I nodded in agreement at her brash and inappropriate behavior. I was secretly cheering.

Back at the hospital Mr. Doctor explained that they needed to do a blood test and take a urine sample.  I was numb, but I agreed.  A proper urine sample can’t be done on an uncircumcised boy without doing a penile insertion.  Mr. Doctor asked why Konrad wasn’t circumcised.  I told him Mr. Businessman did not think it was necessary.  Mr. Doctor said that in 99.9% of cases, that is true.  I thought how comforting it was to be a statistical outlier.  Mr. Doctor explained that any numbing medication could taint the accuracy of the test.  So I held my baby again that night for another painful procedure.

Mr. Doctor told me Konrad needed to relax or the procedure wouldn’t work.  It was a horribly painful procedure done without any numbing medication.  He was 7 weeks old. Konrad was screaming.  My world again became fuzzy and pixelated.  I held his hands and I tried to sing.  I tried to sing but I couldn’t remember the words to any songs.  At the end of the world, there is no music left to be sung.  I tried to sing the very first song I ever remember learning ~ Jesus Loves Me.  I am still not sure if I got the words or the melody right.  But that night, with Mr. Doctor and my baby Konrad, I sang as my world came apart.

His urine sample came back with infection.  I’ll be honest.  I rejoiced.  Finally, I thought.  No more tests.  They knew what was wrong!  We can get medicine and go home.

I was wrong.  So wrong.  By the end of that night, he had so many IV’s I didn’t know how to hold him.  They finally had to put one in his head.  That IV would permanently kill the pigment in his hair and create a white spot in his hair for life.  They had to do so many more tests.  Kidney ultrasounds.  Finally we knew.  The problem was between his kidneys and his bladder.  My 7 week old precious Konrad had permanent kidney damage.

Mr. Businessman finally came for 15 minutes and left.

That night pediatric nurses came and helped me hold my baby. There were so many tubes, I didn’t even know how to pick him up.  They expertly and gingerly handed him to me as I sat in the rocking chair in his hospital room.  That night, I rocked my baby to the rhythm of medical beeps and through my tears, I sang “Held”.  I promised him no matter what happened, I would never leave him.  He would be held.

Autism Mom, March 2017

He Isn’t Odd…You’re Just Boring!

I’m often told that I worry too much.  My usual response to this has been, “I’m a mom, therefore I worry.”  I honestly believe that being a mother involves a lot of worry and self-doubt.  Are they getting enough exercise?  Do I let them watch too much TV?  Is this video game appropriate for their age? Am I spoiling them?  Was that disciplinary moment too harsh?  Am I teaching them empathy and compassion?  Am I showing them enough patience?  Does he have a cough or bronchitis?  How many ear infections should they have before we consider tubes?  Should I have them do more chores?  How do I teach them responsibility? Am I expecting too much from a 12 year old?  Is he just a little eccentric or is it something more? Am I being too lenient?  Will they get into a good college or trade that they enjoy? How will they afford college?

Ultimately, Am I doing a good enough job as their mother?

I think every mother can relate to the barrage of worry and insecurities we filter through our minds every day.  There is no “easy” child.  There are no guaranteed parenting short cuts.  Despite the plethora of parenting books available, none of them perfectly match your unique situation and your unique child.  And they don’t match mine either.

When special needs enter the equation, the worry just compounds.

I’ll never forget the first time someone told me there might be something “different” about my Konrad.  It was a neighbor mom and our children had all been playing together for the afternoon.  She said, “I just love having Konrad play with our kids.  Even if he is a little odd.”  I was shocked.  Confused.  “Even if”…”a little odd”.  As I thought about it I became angry.  He wasn’t “odd”! He’s creative!  He’s smart!  He’s kind!

I became furious. How dare she say something like that?!  Yes I mean, he does insist on sorting his toys into categories and lining them up in perfect rows.  Who cares?  He’s organized!  That’s a good thing!  Well…he does spin a lot.  Lots of kids spin!  He completely freaks out in new social situations outside the home.  Lots of kids are shy!  He doesn’t make eye contact.  Maybe I just don’t look pretty today!  He likes to repeatedly rub certain fabrics.  Who doesn’t love fleece?!  He memorizes music and repeatedly sings them to himself.  He comes from a musical family!  He chews on the sleeves of his shirt when he’s nervous. Well! Well! Well…I’ll buy him more shirts!

I became worried.

What if he isn’t just creative, smart and kind?

What if he is “odd”?

What if it’s something more?

 

Baking Recipes

Banana Spice Bread

Banana Spice Bread

-By Eleanor Langseth

(reprinted in the “Langseth Homestyle Cooking” compiled by my cousin Alicia Baer)

Combine:

  • 1c (2-3) bananas, mashed
  • 1 tsp lemon juice

Sift together:

  • 2 1/4 cups flour
  • 2 tsp baking powder
  • 1/2 tsp soda
  • 1 tsp salt
  • 1 1/2 cups sugar
  • 1 tsp cinnamon
  • 1/2 tsp nutmeg

Add to sifted ingredients:

  • 1/2 cup butter (the recipe calls for shortening…the butter is a “Tracyism”)
  • 2/3 cup buttermilk
  • Banana mixture from above

Then add:

  • 2 eggs
  • 1 tsp vanilla

Beat together.  Pour into greased loaf pans.  Bake @ 375 degrees for 60 minutes. I recommend covering the edges with tinfoil to prevent them from burning during baking.

Baking Recipes, March 2017, Mom Life, Mommy Confessions

I Let the Bananas Go Bad Again

Can I be honest with you?  This is a real mommy confession moment. I, Tracy, suck at giving my kids fresh fruits and veggies.

I try.  I swear.  I try really, really hard to ensure my kids have fresh fruits and vegetables.  They are on every single grocery list and 99.9% of the time, you can find them in my crisper drawer or on my counter.

And let’s be clear.  My kids are not the problem.  I hear moms complain that their children won’t touch vegetables, won’t eat fruit.  Not mine.  My 10 year old loves brussel sprouts.  My 12 year old’s favorite is asparagus.  Not only do they love the veggies that most kids find cringe-worthy, they also like them simple.  Just boil them for 2-3 minutes to warm them up but keep them crunchy.  No butter, no salt, nada. No fuss, no muss.

My kids see fruit as a desert.  I followed all the mommy articles I read in the magazines while sitting with my toddlers in the pediatrician’s office.  I didn’t give cookies or deserts or any sugary foods for the first 2 years.  In fact, neither one of my boys would touch their cakes on their first birthday parties – there were no traditional cake smashing pictures.  They poked at their cakes with suspicion and cried.  The only “treats” they got as babies and toddlers were fruit.  So now as preteens, they will often turn down cakes and candy when offered.  They just prefer fruit.

So why am I so bad at this?  Why am I constantly throwing away spoiled produce?

Honestly…sit down.  Here’s the big revelation.

I am busy.

I get tired.

Somewhere between soccer practice and games, karate, orchestra, choir, piano lessons, science competitions, laundry, housecleaning, homework and oh, my job…my best intentions turn into what’s most convenient.  I plan a full month of meals in advance (with veggies! and fruit!).  Yet more days than I care to admit, the task of making a full homemade meal after work while still fitting in after school activities, homework, housework, and family time…it just doesn’t happen.

So here’s the deal.  My kids have a mom and step-dad that cheer for them at every sporting event, piano recital, school concert, and science competition.  Nearly every night they have a homemade main course for dinner.  We diligently sit with them and help them with their homework after dinner every single day.  We play board games together.  We go camping, hiking, fishing, we watch movies together.

And somewhere along the way…the bananas get overlooked on the counter.

So when that happens…forgive yourself and make banana bread.  It may not be as healthy as fresh fruit, but hey, it does contain fruit!  And even my “anti-sweets” kids will eat it! Here is my Aunt Eleanor’s recipe in case you don’t have one.  It’s a personal favorite at our house.

Banana Spice Bread

-By Eleanor Langseth

(reprinted in the “Langseth Homestyle Cooking” compiled by my cousin Alicia Baer)

Combine:

  • 1c (2-3) bananas, mashed
  • 1 tsp lemon juice

Sift together:

  • 2 1/4 cups flour
  • 2 tsp baking powder
  • 1/2 tsp soda
  • 1 tsp salt
  • 1 1/2 cups sugar
  • 1 tsp cinnamon
  • 1/2 tsp nutmeg

Add to sifted ingredients:

  • 1/2 cup butter (the recipe calls for shortening…the butter is a “Tracyism”)
  • 2/3 cup buttermilk
  • Banana mixture from above

Then add:

  • 2 eggs
  • 1 tsp vanilla

Beat together.  Pour into greased loaf pans.  Bake @ 375 degrees for 60 minutes. I recommend covering the edges with tinfoil to prevent them from burning during baking.