In Honor of Mikaela Lynch

As I reflect over the events of the last week in particular my heart aches.  It hurts for poor sweet Mikaela Lynch, Owen Black, Drew Howell and other children who have recently wandered into danger.  It hurts for their families who will never ever be the same.  It hurts in fear of losing my own babies.  While they’re not technically babies anymore, to me they are still just as vulnerable and losing them would cripple me, to be sure. 


My youngest is on the Autism spectrum.  Long before we had a diagnosis we still knew that there was something a little different about Ben.  We never quite knew if he was listening to us.  We never knew if he could feel pain the way we do.  We never knew if he experienced fear.  He was our dare devil, to put it mildly.  But I can tell you for certain it never occurred to me that he would walk right out our door and take off on his own adventure. 

 
Until he did.

 
When he was about three years old he literally made my heart stop for the first time in my life and it’s never quite been the same since. We trusted he was just like our other children. That he had fear of the unknown and would stick close to home. I learned the hard way that he would forever be our child that we must watch like a hawk. One Sunday evening I was cooking dinner while my husband was working upstairs. Ben was in the living room completely in my line of vision and earshot, watching one of his favorite shows. Our front door was open with our screen door locked, allowing in the warm spring air.

 
Amidst the sounds of cooking and pans clanging, I must have completely missed the sound of the door unlocking and unlatching. After an unknown amount of time…may have been 5 minutes, maybe 15, I called up to the gentleman that dinner was ready and to have the kids come downstairs…including Ben who I assumed had joined his siblings to play.

 
He wasn’t upstairs. He wasn’t downstairs. He left.

 
My heart was in my throat as I threw open the front door instantly yelling his name as I choked back the panic. I called my neighbor to see if he had meandered next door…she was one of his favorite people. No luck but she quickly met us outside where we feverishly began to assign search areas.

 
The neighborhood was impossible….a ray of homes only 10 feet apart lining both sides of the street capped at both ends with retention ponds. Jesus. I went to the dark place and fast. I ran…shoeless and with my phone down the street to the pond closest to our house. My husband jumped in the car and drove around the neighborhood asking kids if they had seen any sign of him, recruiting small search parties of older children along the way. As I sprinted down the sidewalk, the homes on either side began to resemble an Alfred Hitchcock movie…the street lengthened and my legs began to feel like stone, growing heavier the closer I got to the pond. Flashes of our family on the 5 o’clock news, police canvassing the neighborhood, all flooded my head and finally brought the burning tears to my eyes. How did I lose this baby?? How could I be so careless?

 
As I reached the pond I saw a large rubber ball floating along the edge…and in that moment a switch was flipped. I looked down at my phone and knew it was time to call the police as I headed toward the water.

 
As I lifted the phone I heard a commotion. I looked back down toward my house and saw a cluster of children screaming undeterminable words, almost dancing in the middle of the street. As I focused between the scurry of neighborhood kids, I saw two chubby bare thighs and I knew. It was him. (God love him, he was in nothing but a thermal shirt, diaper and sandals. At least he put on his shoes.) I don’t know that my sadly out of shape legs could have carried me to him any faster.  I scooped him up as the kids in their excitement followed us all into our home. After thanking and hugging our helpers, the gentleman could see that I was on the verge of losing my shit and quickly sent them on their way…lest they see me “ugly” cry. Nobody wants that. I didn’t know whether to spank or squeeze him…or both. After I regained my composure I held him tight the rest of the night...and vowed from that point on we would provide an environment that would keep him safe and contained.

 
I generally don’t take him places where he could get lost in a crowd. Lord knows if he slipped out of my hands and ran, I would not likely be able to catch him.  Family gatherings, if not in a small enclosed area, never allowed me to sit and rest.  We were forever asking “where is Ben?” and do to this day when he’s not under my nose. 

 
Do I keep him under lock and key every moment?  No.
 

Do I avoid what could potentially be rewarding experiences for him or our family because I’m scared to death of losing him?  Yes. 

 
I don't necessarily regret avoiding Disney World or places like it.  I'm not sorry that we live in an area that doesn't allow for him to freely ride his bike.  I have a much shorter leash on Ben and have for four years because we now know he's a wanderer.  I am so damn thankful I got a second chance to be an overbearing, overprotective mom.  What I wouldn't do to give these parents who have lost the loves of their lives that chance too. 

 
Right now the parents are hurting.  And they’re questioning themselves.  And they’re taking criticism.  And GOD all they need right now is our love and our support.  It could be any damn one of us in their shoes right now.  Because we never know it can happen to us until it does.  It takes less than a minute for a child to walk out the door and out of sight.  Whether we want to believe it or not, we can’t all be on guard every damn minute.  We take bathroom breaks.  We cook meals.  We are human. 

 
Please…do three things after you read this:

 

(1)   Say a prayer, send positive juju, light a candle for these families that they find peace and support as they move through the following days, weeks, months, years.  You can leave thoughtful messages and notes of encouragement for Mikaela’s family at http://mlvillage.org/about-mikaela/.

(2)   Help thy neighbor.  Maybe not your actual neighbor…but your community, family, friends.  Know that after hearing of these stories those parents who are already on high alert for their own children who have a tendency to wander will be even more-so.  And they are tired.  Lend a hand.  Or two. 

(3)   Please check out and donate if you can, to the National Autism Association’s Big Red Safety Box Toolkit campaign.  They offer grants to families who cannot afford to purchase these kits on their own.

Hug your babies.  Tight.  

Loss and Light: The Story of My Maddex

I am so thankful to have an opportunity to share with you the story of a very dear friend of mine.  It is by no means an easy story to read.  She tells of the loss of her first-born child three years ago.  She has never put her story to ink and found it to be rather therapeutic.  I offered to share in the hopes that other moms who have been through this will know that the feelings following such a tragedy are normal, you are not alone...and most importantly, so my dear friend knows she too is not alone.  Here is her story...


THE BEGINNING. This is the story of my angel boy. It started when I met the man of my forever in November of 2007, he was a blonde haired, blue eyed baseball player from the country; his name was Brandon and he stole my heart. We moved in together about a year after meeting and he proposed to me. We didn’t have some magically perfect relationship; we struggled just like every other couple. Fought over money, who was going to let the dogs out, and whose turn it was to vacuum…the usual. After a year of being engaged we bought a house together. Now, you may think we did things a little backwards…but it was right for us. We had started planning a beach wedding in my hometown of Virginia Beach. My mom put a deposit down on a gorgeous beach house for everyone to stay at, things were falling into place. Brandon and I felt closer than we ever had; I can tell you now we weren’t our closest, not hardly. In August of 2009 I lost one my really good friends to Cancer…it was a battle Dana had been fighting for a very long time. It was hard for me to deal with, I cried for her often…I was trying to heal my broken heart from that tragedy when in December of 2009 our plans changed drastically. I was pregnant.

This was not planned…and this felt majorly backwards. We told his mom first, she was a lot more forgiving than my mother who was heart first into the beach wedding. We sat his mom down in our living room and told her I was pregnant…she cried…I cried…it was exactly how I imagined it to be. Then I had to tell my mom. I love my mom, as I have gotten older we have grown closer. She is from New York and boy, let me tell you…when she’s mad she is ALL New York. I was in the car with all of Brandon’s family for moral support when I made the call to my mom. It was so hard to make those words come out of my mouth…luckily I didn’t have to…moms know everything after all. I told her to sit down…”you are pregnant.” It stung to hear someone say it with such disappointment. She yelled, I cried…it was exactly how I imagined it, I broke her heart.

THE HIGH. Brandon’s mom planned a wedding in 2 weeks. It wasn’t a last minute court house trip. It was a BEAUTIFUL wedding at a clubhouse in Georgia where Brandon’s grandparents live. Most of Brandon’s family was able to make it, my side was pretty empty…but I was ok with that. My parents did come, and though I know it hurt my mom gravely, she put a smile on her face. After the wedding we came back home to VA and life went back to normal. We were excited, we were happy, everything was perfect. I was carrying OUR child. We made that baby out of love. I was starting to show, I had a tiny little bump where that baby was growing. We were closer than we had ever been, right?

REALITY’S SLAP IN THE FACE. If you have never been pregnant you probably only know the positives. You get pregnant, you might feel a little sick in the beginning, but you get this cute little bump…then you have a baby and you have a new love of your life. That’s how it always goes right? That’s what I thought. That’s what I EXPECTED. We had our second appointment for the little bean in my belly…I was about 12 weeks along. What should have been a routine check-up, measurements, pictures, movement, was one of the worst days of my life. The ultrasound tech did a great job of keeping a positive face…showing us our baby, little arms, little legs, a heartbeat….we were ecstatic. That was until we went to talk to the doctor. Instead of going into the room with the stirrups and the scale to chat he called us into his office…he made us sit down in the nice leather chairs…then he said “there is something wrong”. WHAT DO YOU MEAN THERE IS SOMETHING WRONG?? I saw the baby, I heard the heartbeat. NOTHING IS WRONG. We are so happy right now, we are closer than we have ever been…don’t you dare take that away from me.

THE ROLLER COASTER. Our baby had a cystic hygroma, it’s basically a cyst that runs from the top of the baby’s head to the back. I went from an extreme high to low. It could be a chromosomal disorder, we wished at that time it wasn’t…but looking back now that was the wrong wish to make. Brandon was in denial, he didn’t want to believe anything was wrong…as far as he was concerned we had a perfect little baby in my belly. That made it harder…I was fighting this low on my own. Specialist appointments were made for us, a heart sonogram for the baby, an amniocentesis…everything you shouldn’t have to do when you are pregnant in a perfect world. But this was now MY world.

They stuck a giant needle in my stomach and took out some of the fluid…I felt the needle enter the sac where the baby was…it felt like a balloon popped inside of me. I was at work when I got the call with the results. The baby’s chromosomes were fine…it was a chromosomally perfect baby boy. How could that be? That my baby with the cystic hygroma had no chromosome issues? Back to the high, I cried tears of joy…maybe the cyst was a fluke…the doctor said they could do surgery when the baby was born to remove it…he was going to be fine! Women stopped in the hallway at work to celebrate with me and cry tears of joy for me. It felt so good to be back to where I was when this started.

We had another doctor’s appointment shortly after that to do a heart sonogram, most babies with the cystic hygroma also have heart defects. When we went we had my mom and his mom with us…we have more support than we could ever show our gratitude for. There was our son’s heart on the big screen, beating for everyone to hear. He was alive…and he was WELL. His heart was perfect. No holes, beating as it should. He had a BIG, PERFECT heart. We felt blessed. Our baby was a fighter and he was strong; we were going to make it through this.

Our next appointment was at 20 weeks, they needed to measure all his bones and organs to make sure he was growing. Our appointments were at the specialist from this point on…that waiting room made me sick to my stomach, and I always felt bad for the women in there…something was wrong with their babies. They weren’t lucky like us…we had a perfectly healthy baby, this was just a precaution. I always separated myself from them…we were not the same, I refused to believe it. This ultrasound tech wasn’t as good at keeping a positive face. She called in another tech…and then the doctor. My heart started racing…what did she see that I didn’t? He has a cyst, we know that lady…calm down. “We are going to need you to stay longer, he’s not moving as much as a 20 week old fetus would.” HE’S NOT A FETUS, WOMAN, he’s my son. I stayed, by myself…Brandon had to work and this was supposed to be routine after all. He didn’t move anymore. He wasn’t swallowing the amniotic fluid. His stomach was empty. “He is paralyzed from the neck down.” Excuse me? PARALYZED? We can deal with that, he’s healthy, he has a big heart, his chromosomes are fine. He is fine. “Would you like to discuss terminating the pregnancy?” Back to the low. No ma’am…I WILL NOT terminate my son. I called my mom as I was leaving...I broke down. Mom, he’s not fine, I need you to come here please. And she did, as she always did when I needed her.

She drove 5 hours to visit for the weekend; to help around the house while I cried; to make things normal for me, because that’s how we get better. We chose a name, Maddex William Scott Grenier. Because Maddex wasn’t swallowing I had a lot more fluid in my belly than I was supposed to. I was HUGE. I couldn’t breathe and I was uncomfortable all the time. I was about 23 weeks along when I lost my plug, the first sign of labor. He couldn’t come yet, he wasn’t done growing…WHY WAS MY BODY DOING THIS TO ME?! The whole world is against my little family and now my body is against me too??? I felt like I was fighting every day, fighting for my son. Fighting to keep my sanity. April 16th was my friend Dana’s birthday. I celebrated her birthday with a broken heart...she wasn’t there for my wedding and she wouldn’t be there to meet my son. Life. Was. Not. Fair.
THE END. One day at the end of April, while I was at work I started to have sharp pains and I could not breathe. My doctor told me to go to the hospital, they would be expecting me. I went in got an IV they checked everything out. I was having contractions, but I was not dilated. They sent me home. I went to my doctor the next day and he wrote me a note to stay out of work. My body just couldn’t handle the stress. My mom took leave from work to come stay with me. I remember one day she was out planting vegetables in the garden. I went out to her and broke down. Why is this happening to me mom? What did I do to deserve it? She hugged me and we cried. We stood in my backyard surrounded by the mountains and cried.

About a week later in the middle of the night I started having contractions again. Called the hospital and they told me to come in. The doctor, who looked like Einstein, checked me and said I was 1 cm dilated. They decided to admit me. The nurse who came to put my IV in was clearly new. She stuck me 5 times in each arm before another nurse came and got the IV in. I was crying. I was in pain…it was 3 in the morning and I hadn’t slept yet. They gave me an antibiotic since I was so early, they hadn’t done the strep B test…a routine test in a normal pregnancy…not mine. The antibiotic burned so bad. More tears… still no sleep. When morning came around a doctor came in to talk to me. Not my doctor. She wants to talk about the options for delivery. I AM ONLY 25 WEEKS, WHY ARE WE DOING THIS NOW?! He has a cyst, he is not developed…his chances of survival are about 1%. “If you deliver vaginally he will probably not survive, if he does we can give you time with him until he passes or we can take him to the NICU and do everything to try and save him. The only option for a C-section is a classical C-section. If you do that he will probably survive birth, but there is no way to know if he will live. The classical C-section can also prevent you from any future pregnancy…it may not…but there is no way to know until it’s done. He is too small for a regular c-section; that is not an option.”

As I sat there in a fog trying to take it all in I realized they just told me I can either fight with all I have for my baby, risk never having another baby and probably losing him, or let nature take its course. This is the hardest decision I have ever had to make. I literally had my son’s life in my hands. I had to decide whether to fight for him or let him go. If I fight for him I risk putting him in pain, being connected to tubes and IVs and having surgeries, lots of surgeries and on medicine probably for the rest of his life. Or I hold him peacefully knowing he will die, assuming he is still alive when he is born. How can anyone make these kinds of decisions? No one should HAVE to make these kinds of decisions. I stopped having contractions so they released me.

I went home to think about what was going to happen when the actual time came. I had a doctor’s appointment scheduled two days later. Not with my doctor, he wasn’t available. I went in and the new doctor checked me. I was 3 cm dilated and 100% effaced…IT WAS TIME. He told me to go to the hospital. I went to Babies-R-US first. I needed a going home outfit for my baby, he was going home. I was determined. The store was remodeling…they had no preemie outfit. Was that sign? Was someone trying to prepare me for the inevitable? It didn’t phase me. I bought a pack of sports onesies that matched hats we had bought for him when we found out it was a boy. I called Brandon and told him to meet me at the hospital...and to pack a bag. It was time.

My mom was with me through all of this. She is the reason I made it to the hospital. She was and is my rock. Brandon showed up with a bag of goodies for me. My favorite snacks, my DS and games, my charger for my phone, and lots of magazines. He was making it normal for both of us. We were not afraid. Maddex was fine. He was going home with us. Friends stopped by to see us; Dana’s mom and sister came and brought me a blanket and stuffed animal and zebra for Maddex. It was all normal. My contractions started to get worse. So they gave me an epidural. It didn’t work. The contractions were so bad in my back the pain was radiating to my shoulders I could feel everything. I cried. I was so uncomfortable. I wanted relief. They put me on oxygen and made everyone leave the room. They wanted me to sleep. They turned off the heart monitor; they didn’t want me to know if he died before delivery.

In the early morning hours of May 6th 2010 I felt like I needed to push. The doctor came in and checked me. I was ready. Wait…no I wasn’t ready...maybe medically, but mentally I was not ready. They let more people in than usual. Both moms and Brandon were allowed. They told me to push. I cried. I yelled. I told them I wasn’t ready, HE WASN’T READY. It was not time. They told me to push again. My heart broke. I felt it shatter. I knew at that exact moment he died. I felt the life leave my body. The life I had been fighting for. The life I wanted so bad to be fine. That little life was gone.

They took him to the station with all the NICU staff standing around. SILENCE. The worse sound you want to hear in delivery room is nothing. I wanted so bad to hear his cry for life. But I didn’t. No one did. He was already gone. They brought his lifeless body to me and said they were sorry. They might have been. But I didn’t care. No one could be as sorry as I was in that moment. I didn’t fight hard enough for him. This was my fault, I did something wrong to make this happen. What if I had the c-section, he might still be alive. This was my lowest low. I held him all day. I put a diaper on him, I dressed him, I wrapped him in the blanket from Dana’s mom. He was mine. They brought us to a recovery room where, they took him from me to do some tests so I could shower and relax. Relax, really? Brandon’s mom contacted an organization called Now I Lay Me Down To Sleep. They send a photographer to the hospital to take pictures of “sleeping” babies. We had our family pictures done.

My broken family was recorded in photographs. In the afternoon they told me it was time to let him go. They brought up a little plastic coffin with a blanket in it. The hospital priest came to our room to bless my son before we laid him in his, now permanent, resting place. We all cried. He looked so peaceful when I put him in the coffin. Like a little angel taking a nap. That was the last time I saw my son. We had a small funeral; just family and close friends. I don’t even know who was there. My eyes were filled with tears the entire day. My aunt and cousin from NJ came down. They bought me something to wear to the funeral…I hadn’t even thought about that. The following months were filled with struggle. I was at my lowest point in my life. Brandon was trying to keep me alive. I felt dead. I wanted to be dead. I wanted to be where my baby was. Several attempts to take my own life always ended with Brandon fighting me. Dumping pills down the toilet. I hated him for it then, I love him for it more than ever now.

CLOSURE. I will never “get over it”. That’s not how this works. Your wounds heal, but they leave a scar. They had said while I was pregnant they thought he had multi-pterygium syndrome. When he was born they weren’t so sure. We still don’t have a diagnosis. I wish I knew what killed my baby boy, but I’m afraid I will never know. I did know the only way I would be able to close the door in this chapter was with another baby. In the year that followed I found comfort in the fact that Dana was with my son in heaven…and that we would try again for another baby. That was another struggle for me and Brandon. He didn’t want another one, he was scarred. I needed another one. I needed to hear that cry for life.

In July of 2011 I found out I was pregnant again. We were so beyond happy. That moment, that positive test, we were closer than we had ever been. We were brought together through the loss of life and creation of a new one. The door was hopefully closing on that hell our life had been. In February of 2012 at 12:03 AM the day after Valentine’s Day I heard the cry for life I had been dying to hear.

Aubrie Leone Grenier saved my life. She is my reason for living. I realize now the door to Maddex will never be closed. The chapter may be over but our story continues and he is still a part of it. I think about the what-ifs from time to time, but that doesn’t change anything. He is and always will be our angel.

 

The Talk

Decisions, decisions.

For two solid weeks I went back and forth…Autism Walk or baseball game?  Autism Walk?  Baseball game?  For the second year in a row we had another commitment the same day as our local county Autism Walk.  Dammit.

This year the conflict was a little league baseball game.  A game in which I knew Ben would shut down by the 3^rd inning.  A game in which Ben would need a firecracker lit beneath his rear to get him moving from outfield to dugout and back.  A game in which Ben would walk away feeling like a failure.  Again.  While I want Ben so badly to become an engaged member of that team, it wasn’t entirely difficult to make the executive decision the day before…we’re ALL doing the Autism walk.  The whole damn family. 

 

Lib and Timmy weren’t sold on the idea.  Of course they had no clue what to expect.  Another day of Ben being the center of attention, maybe?  Probably what they pictured.  But I needed them to understand how important it is that Ben sees that this entire family is on his side.  That we all support him.  Just as he has been cheering from the sidelines for years at Lib and Timmy’s basketball and football games.  It is their turn to cheer. 

We arrived fairly early, got registered and our t-shirts.  It was pretty chilly but Ben was thrilled to don his immediately.  The walk was scheduled at an elementary school…complete with a walking track and a nice big playground.  Perfect setting!   As more kids arrived the playground began to fill.  The gentleman and I stood to the side and watched many of the kids meander in and around the yard…many of them navigating the playground much like Ben.  Keeping to themselves.  Captivated each in their own world.  And for the first time….well…ever…Ben wasn’t alone in this.   And he loved it!  Before we knew it our NBA mascot, Boomer, arrived and Ben was elated.   Seeking pictures and a high five…smiles were abound.  And you know what…Timmy and Libby were actually having fun too!  (Brief glance to the heavens and a silent “thank you”.)

Just before the walk began, the kids decided it was time to grab a hot dog and sit down for a quick bite.  We found an open table next to a van broadcasting for a radio station.  While the kids were eating, the local DJ was interviewing one of the participants about her involvement with our county’s Autism Foundation.   And that’s when it happened…

“Mom…what’s Autism?”

NBC's 'Parenthood' - Max Braverman

Holy shit.  Immediately the gentleman and I locked eyes and we realized…we probably should have had this talk at the very least that MORNING.  Why hadn't we thought of this??  Of course we're taking him to a walk that has "AUTISM" blaring on a hundred different signs.  He CAN read.  I immediately flashed back to the episode of 'Parenthood' where Max stands up at the Autism Walk declaring his support for all of those kids out there with Autism...clearly not aware he was his family's participant of honor.   Did I really think Ben would assume we were walking to support a cause I randomly picked out of a hat?  I never claimed to be brilliant, folks.

Who’s gonna…what do I…how do I...how’s he gonna…crap.  

Dad took the first stab…”Okay Ben, Autism is when your brain is wired a little…well...you see…” I could see the look in Ben’s face and immediately interjected that there are not in fact any actual wires in your brain.  (I saw that one coming a mile away.)  After stumbling through a few attempted technical explanations, I took a turn.

“Ben…buddy, you know how a lot of times in school you get really frustrated because you feel like people don’t understand what you’re trying to do or say?”

Nod

“And you know how sometimes you get upset because you really want to take your time on your school work and get it done completely right instead of moving on to the next activity?”

Nod

“And you know how when people approach you and want to talk to you but you have a hard time answering with words and you don’t really look at them and…”

Holding up his chubby little hand to halt me… “Mommy.”

“What buddy?”

“I have Autism.”

It was all I could do to nod, get past the monstrous throat lump, squeak out a “yep…yep, buddy you do have Autism and that’s why we’re here” and pull the sunglasses back down over my eyes.  His very serious face was satisfied.  He didn’t ask anything else.  At that moment he didn’t need anything else.  As I attempted to continue our talk, he made it clear that he was done talking, done eating and ready to play again.  As he scurried away the gentleman and I exchanged glances…he knew where I was.  And I knew that my oversized shades were not hiding the tears streaming down my face.  We cleaned up our mess, followed the kids back to the playground, completed our walk, got some great pictures in the meantime and then headed home.  The gentleman and I determined we would revisit the conversation later…after taking some time to research how best to have such a talk with your ASD child. 

 

While I wasn’t prepared to have that discussion right then and there, I naturally thought of all the things I wanted to tell him after the fact.  But what I took away from that day…is that, as big and overwhelming as Autism feels to me…as frustrated as I get…as much as it is an everyday topic, a never-ending part of our world now…it is NOT everything to him.  Our talk didn’t make him cry.  Or scared.  It doesn’t stop him from playing, from laughing, from living his life.  It doesn’t keep him from fighting with his siblings or giggling about fart sounds with other kids in the carpool line.  He's not fretting about his IEP or what day he has speech therapy.  It doesn’t change HIM.  Those worries...they're mine.  And they should be.  And I'll take 'em. 

Ben can just be...Ben.

 

Sometimes...There IS Crying in Baseball

Welp, we’re at it again…another sports season, another three months of sore ass by cheap camp chair, another round of cool, Saturday morning games with a little Baileys sneaked into my travel mug. 

I’m kidding.

No I’m not. 

This time though I’m not talking football.  No…my Ben decided this year he wants to try baseball. 

 

We’ve had an interesting go of organized sports with Ben.  Two years ago he showed quite a bit of interest in playing football like his big brother.  As a kindergartener, it meant he would be playing no-contact flag football.  This was of course before we had a diagnosis for Ben, other than ADHD.  I recall his first few practices, with his uber-serious grumpy old man face, watching him aimlessly meander around the field, cutting in line in between drills without realizing he was pissing off his teammates, seemingly more interested in the overgrown dandelions than the coaches or plays.  Was this really the right choice?  I recall how the older two handled soccer when they were only slightly younger than Ben, and his behavior didn’t seem too far-fetched.  It was a struggle to get him through the season.  He didn’t appear to enjoy the practice or the games.  He didn’t make friends with teammates.  The coaches were frustrated.   I remember the day I tried having the conversation with the coach that Ben was a little…different.  And as I was attempting to explain some of the struggles Ben has experienced I glanced across the field to find Ben not throwing the football with his friends or playing chase with the others…rather, he was several yards away already climbing halfway up the 20-foot baseball fence.  By himself.  Naturally. 

 

He gave flag football a shot again last summer and to my surprise…he enjoyed it!  He smiled.  He participated.  Enthusiastically, I might add.  He was good too…aggressive, fast, cooperative.  It was so much fun to watch.  Of course he had his moments…his days…when everyone and everything pissed him off and he wanted nothing to do with any of it.  Thankfully those moments were few and far between.  Being a football player has given him common ground with his big brother, who he admires so very much.  While I think Ben has really cherished having that connection with Timmy, he is starting to feel the need to branch out and try something that just might be HIS thing.  So when the baseball flyer went out to the kids at school, guess who was at my desk with a pen and a stoic face and my checkbook.  Yep.  I couldn’t say “no”.  

So we signed him up.  And before we knew it, it was time for new player evaluations.  Time to stand in line and wait to test his throwing, catching, fielding and batting.  How will he compare?  We are by no means a baseball family.  If there aren’t any shoulder pads involved, I got nothin’.   We got to the baseball center and found our place in line.  We watched little peanuts no bigger than a Chihuahua out there catching and throwing like pros.  We saw bigger boys with ‘staches that I swear will be asked to produce a birth certificate at some point this season.  Ben quietly monitored their every move.  He didn’t say much at all until it was his turn.   As they called his name he turned to me and asked “but Mommy…what if I don’t do good?”  Ugh.  This kid.  I smiled, patted his back and told him he would do just fine.  And he did.   He’s not a natural by any means.  He throws like he has pigskin in his hands.  And he’s a lefty which I think feels a little awkward.   But he’s not bad either, particularly considering he’s never picked up a mitt, bat or baseball in his life.  I’ll take it!

They had the player draft last weekend and I received the call from his coach on Sunday that we would have a parent meeting this week to get schedules and talk about the upcoming season.  He explained we wouldn’t have practice due to cold temperature (given the weather trend this year, I’m assuming this season will pretty much be postponed until June…ya know, when the temps skyrocket from 30 to 90 overnight).

We arrived at the gym in a school on the other side of our town, saw his teammates scattered about the gym floor laughing and playing catch.  The parents were migrating toward the bleachers so I too made my way toward a seat…with Ben still glued to my side.  At no point did he tug on my jacket and ask if he could join the boys, rather he watched pensively and didn’t lose physical contact with me.  After the coach summarized what to expect this season and let’s not forget the fundraising (thank God for the buyout option), I nudged Ben to “go see what those boys are doing.” 

I could hear the adults around me asking their questions, “so where is this diamond?”, “if it’s too cold, when will the practices be rescheduled?”…it all sounded like chatter a million miles away as I watched Ben hesitantly scope out the boys on the floor.  He traced the perimeter of the gym, with his studious face, taking it all in and by the looks of it, becoming more intimidated and less interested by the minute.  Not once did he jump in to say “hi” or wait in line to throw with the others.  Not one kid looked up at him and asked him to play.  Not one kid asked him his name or even seemed to notice he was there.  So grew the lump in my throat.  God I can’t take rejection myself much less for my sweet guy.  He finally made his way back around to me as the parents’ voices suddenly came back to full volume. 

Buddy, I thought you were going to go see what the boys were doing?

I DID see.  <sigh complete with eye roll>

Yep, okay, buddy…I get it.  But what I meant to say was you should go PLAY with the boys, not just see them.

Fine. 

I watched again as he reluctantly headed back out along the baseline of the gym.  Just about that time, the coach called all of the boys into the middle of the room.  I glanced up to see Ben holding his ground under the free throw line.  I motioned him to join the others, and in true Ben fashion, his hands went into his pockets and he slowly swaggered his way to the group, Tommy-Lee-Jones-face and all.  They introduced themselves chatted for a moment then the coach turned and dismissed us all from the meeting.  As I headed down the bleachers to get Ben I could see him watching some of the boys returning to the balls to play more catch.  I leaned down and asked:

Buddy, are you ready to go?

Uh…I um…I don’t…

Do you want to stay and play for a few minutes?

Well, I uh…um…yeah, but…

What’s the matter, buddy?

With this horrendously hesitant and frightened face he looked up at me and said:

But what if my new friends don’t like me?

(this is when that aforementioned lump turned into a volleyball, prohibiting me from speaking.)

My eyes shot straight to the ceiling, hoping the tears would roll back into my head…I’m surrounded by strangers for Christ’s sake.  THERE’S NO CRYING IN BASEBALL.  I got it together after a few seconds, knelt down next to Ben and told him:

THAT is impossible, Ben…how could they NOT like you??  You are funny.  You are nice.  You are a good person.  They will like you.  You just need to help them get to know you. 

And with that he headed over to one of the coaches who was throwing to another child and began playing catch.  Of course he made zero attempt to throw with the other child, only the adult.  This I expected.  But dammit he jumped IN. 

I spent the drive home praising his bravery and asking what he thought of the coach who was throwing with him.  He seemed pleased with himself and with the people he met.  My heart was full.  And scared all at the same damn time.  As it usually is.  I worry what practices will bring…what games will be like for him.  I wonder if baseball is a good sport for him considering what he struggles with.  I hope that I’m making the right choices for him, to push him a little, to build his confidence.   I’d say it’s worth feeling a little fear in my heart for him to experience success.  We’ll see what this season brings…and I’ll try to keep the crying at bay. 

Embracing the Puzzle

It occurred to me today that it’s been nearly a year since Ben’s diagnosis…a year since we first heard “Asperger’s” and “Ben” in the same sentence. A year full of relief and struggle and successes and setbacks…quite a year, indeed.

 

Over that period of time my allegiance to this label has varied. Although I was relieved to finally have an answer that made sense to me…one that clicked…it still meant that there was something NOT typical about my child. While I can appreciate how my Ben is different than other kids, I still fear for him…fear for his ability to do well in school…fear for his ability to form friendships and caring relationships as he grows older. I had shaken hands with Asperger’s and maybe even invited it into our home for dinner…but I don’t know that I was entirely ready to make a bed for it. Know what I mean?

 

Some strange voice in my head kept telling me the tests were wrong. He’s fine…he’s not really on the Autism Spectrum. Ben is quirky. He’ll grow out of it. I just need to parent him better. Yes…that’s it…I need to work harder with him. I can pull him through this “rut”. That’s what it is. It’s a rut. That’s all.

 

I’ve been wandering through my days…smiling and nodding…explaining Ben’s new “situation” as some would call it…”Yes, Ben is on the spectrum”. “Yes, we have an IEP.” “Yes, Ben is getting social therapy.” And while I’ve idly occupied my spot in line of the parents with kids on the spectrum…I haven’t been an active participant. For a variety of reasons. If I’m honest, this is quite an intimidating group of parents with whom to associate. And I get it. They (we) are warriors for their kids. They (we) have to be. Who else is going to stand up for their (our) kids to ensure they are afforded all of the opportunities they deserve?

 

See what I did there?

 

I’m trying. I’m trying to insert myself. It’s tough. I suppose if I whip out my card that says I’m an Autism parent I’d have to be ready to represent at any given moment. What if I’m quizzed? What if I can’t carry on a convo in a group of these parents?

 

What pisses us off about Jenny McCarthy?

What is our stance on immunizations?

How do we feel about Autism Speaks?

 

GO!

 

<lost look, glancing side to side>

 

Uh….I don’t…know? I don’t. Really. And honestly at this very moment I don’t care. I am by NO means belittling others’ interest in these matters. I realize people have spent a lot of time, energy, blood, sweat and TEARS on all things Autism including what I mentioned above. I can only speak for myself and where I am right now in this journey. Right now my focus is on my son and figuring out where to go from here.

 

Up to now, Asperger’s has been a neighbor or fond acquaintance. I’ve kept it at arm’s length. Not ready to take our relationship to the next level. And in doing so I’ve not entirely accepted my son. How horrible is that?

 

Today, I vow to accept what I know to be true. I am not only shaking hands with Aspberger’s…I am embracing it.

My son has Autism.

I am an Autism mom.

 

Typing those simple words…simple as they are…took 10 minutes to type. And sent burning tears from eyes down my face. I can’t yet pinpoint why. But I can’t move forward until I say those words.

 

As I said, I’ve not yet been what I would consider a card-carrying Autism parent.

 

Until today.

 

 

 

Today I purchased a beautiful puzzle pendant. For me to wear. Around MY neck. Every day.  And it will serve as my reminder. A reminder that I am doing everything I can. That it’s not my fault. That Ben is wondrous. It will serve as an education piece. A talking point. And while I may not be prepared to discuss my thoughts on subjects such as changes to the DSM or other health care or political hot-button topics, I AM prepared to talk about my Ben. And OUR journey thus far. I owe that to Ben. I owe it to the other parents out there, standing where I was a year ago. Where I was six months ago. Where I was this morning before this change of heart. This puzzle is not so bad after all.

 

 

**The pendants in the photo above were found through Grape Jelly On Pizza and a link she shared today from Designs by Ja9.

 

These Moments

As I rolled over in bed and scraped the crust out of my eyes I could hear the boys downstairs, very clearly turning my dining room into the Indianapolis Motor Speedway.  They're up. 

Need. Coffee. Now.

God, please tell me they made their own breakfast.  And then it occurred to me, "crap...we're out of everything."  We slept a little too late for a grocery store run...these kids are hungry.  Now.  This typically results in momma running out to grab donuts, allowing for a quick stop at Starbucks for the good stuff.  If they get a treat, so do I. 

This morning, however, the Gentleman actually offered to take us all out to breakfast.  Yes please!  (FYI this doesn't happen often.  And by "not often" I mean never.)  Now...one would think that kids who rarely get to do this would be agreeable and eager to go anywhere if it meant they didn't have to eat the lowly shredded wheat left in the cabinet.  Silly mommy...it's never that simple. 

Lib and Timmy were finally in agreement and good to go.  They are generally easy to please.  Ben, on the other hand...well he evidently woke up on the wrong side of the weighted blanket.  Awesome.  He didn't want to get dressed.  He couldn't understand why he couldn't just wear his underwear.  Or shorts.  (FYI, the temp this morning was aBOUT 15 degrees.)  Once he got dressed, the jeans were too loose and falling down. (No.  They weren't.)  His socks weren't right...and of COURSE his comfy socks were all in the wash.  Of course.  He was irritable.  He didn't want to leave his stuffed animals.  He couldn't decide what he wanted for breakfast.  Or where he wanted to go. He wanted pancakes.  NO...he wanted donuts.  YES DONUTS.  Dear. God.

The events so far that morning were leading to what was bound to be a "Parenthood"-esque diner scene.  I wasn't feeling froggy and decided to choose my battles.  The gentleman took the older two to breakfast...and I took Ben with me to grab a couple of donuts.  <Sigh>. 

Divide and conquer.  Again. 

Instead of Ben being satisfied with getting his donuts, he spent our ride to breakfast berating me for taking so long to get us there.  God forbid I take the time to actually scrape the 10 inches of ice off my car and dig my windshield wipers out of the snow before safely driving down the road.  I realize that is an inconvenience.  These are the moments I really try to understand how black and white things are for him.  He didn't see any of this as a treat or a favor for him at all. 

WHY is this taking so long??  It's taking forever.  How many minutes till we get there?  Why can't we just go meet Daddy at Flapjacks?  I changed my mind! 

 

Ben!  I just froze my hands off my arms trying to get the car scraped off quickly so I could take YOU to get the donuts you wanted SO badly...I'm sorry it took me so LONG but a THANK YOU would be nice!

 

Are YOU making fun of me!?!?!

 

<Sighing and replying in a much softer voice>  No Ben.  I'm not making fun of you. I would NEVER make fun of you.  Let mommy try again.  You know how in your therapy sessions you talk about how to speak to other people in certain situations?   Well, in a situation like this morning, when someone tries to do something fun or nice for you, you should say "thank you" even if you're frustrated about something.

 

UGH...why didn't you just say that in the first place??

Mommyhood-1
BlissDis-0

We rode silently the rest of the way, when we got there he seemed much more agreeable...like a different child.  We found a quiet corner and sat down with our donuts, hot choco and coffee.  I'll admit I was disappointed.  I know it's just breakfast but I get tired of not being able to just get up and go to a restaurant without issues like this.  If we had, we would have paid for it dearly.  As would the other poor patrons surrounding our booth.  This isn't just an issue for parents with kids on the spectrum...I realize that.  I feel like it happens so often though.  This is a long-standing tradition for us.

As I sat next to him, sifting through these thoughts, I realized we were sitting near another momma and her son.  And I know I'm no expert, but after observing for a bit I'm quite positive he too may have been on the spectrum.  Maybe not.  But I couldn't help but wonder if this mom was playing the same game I was.  It sort of made me feel better at the thought.  She was enjoying him regardless.  Just as I was enjoying Ben.  He was in heaven with his sprinkle donut and hot chocolate. 

My focus changed direction and as I usually do in these one on one moments, I really worked with him on having conversation. It's always times like this that I realize how very little he makes eye contact. Even with me. And while I squelch the twinge in my stomach, I find his eyes and make him look at me when he speaks.  And he talked.  And talked.  And talked. 

Mommy do you remember when we came here when I was little after I had all those shots at the doctor's office?

 

Wow, Ben, that was a long time ago...how do you remember that??

 

Because I'm smart. And Mommy...was it those shots that made me bad?

 

<Gulp.  Where the HELL did he get that??>   Uh...Ben...why would you say that?  First of all you're not bad, and second of all, your shots just protected you from being sick.  Why do you think you're bad, buddy?

 

Because I always do bad stuff.  Like inappropriate stuff.  Ya know, like when I get in trouble all the time?  Like when Timmy and my friends get mad at me? 

 

<Aaaand enter pesky tears>  Buddy.  YOU are not bad.  YOU are not inappropriate.  You are a wonderful, sweet and VERY very smart little boy.  Remember how Mommy told you sometimes we make poor choices but we always get a fresh start to make good choices every single day? 

We spent the next half hour chatting over the last few bites of our donuts.  Him feeling a little better...the both of us laughing about silly stuff...and I forgot about the fact that our morning was disrupted yet again...that we had to divide and conquer.  Rather I felt thankful that I got to have these moments with him.  It's THESE moments that at one time seemed frustrating or inconvenient that I will be begging to revisit 10 years down the road.  It's THESE moments that give me the strength to try again with him every single day.  It's THESE moments, while they sometimes include moments of heartbreak, make me feel like the luckiest mom in the world. 

A New Day

“Dear God…thank you for the food in our bellies, and our warm house to sleep in.  And please, God, hold my hand while I sleep and not make me have any nightmares.  And please help me to have a good day at school tomorrow.  In Jesus name, Amen.”

Every night.  Every single night these are the words that Ben sends up to God.   Okay maybe a few small additions here and there depending on his mood…but for the most part, his big concerns weighing on his sweet little heart at night are (1) uninterrupted sleep and (2) a good day in school.  And for him they are big, big worries. 

Ben with his little monkey circus of snuggle buddies.

 

I’ve spent so many evenings kneeling at his bedside, convincing him that he will get through the night peacefully.  That his magic blanket and God holding his soft little hand will keep him protected and asleep until morning.  I know how frightened he is each night.  I too suffered through frequent nightmares.  I taught him a few years ago, what was passed down to me by my grandma…if you pray to God and ask him to hold your hand while you sleep you will dream peacefully.  It worked on me so I had to try with my Ben.  It worked.  Sometimes.  Adding the weighted blanket to bedtime also helped tremendously.  The two together have given him something to believe in and have lead to much more restful nights than in the past.   He hands that worry over to God and that warm brown blanket every blessed evening.   That improved rest is truly a gift and is aiding him in his second most important quest…to have a good day at school. 

They did a writing project where they shared what they are scared and brave about: "i am Brave uve the Darck."

 

Ben has been through quite a bit in recent years.  He is now in his second year in this elementary school, which is the longest he has been in one building since he was a toddler.   He has been through assessments, evaluations, observations, medications, various teachers, aids and specialists.  Sadly (or maybe not) he is just accustomed to it.  He’s been in and out of psychologist, social worker, psychiatrist, school principal’s offices more times than he can likely count.  Although, now that I think about it he probably could give me a fairly accurate tally.  It’s his world.  It’s been his world.  Why?  All in a quest to get an answer.  To get a label.  To get help.  God, we needed that label.  To guide us.  To validate my gut feeling…to make me feel sane.  Today we learned that due to a significant change to the DSM (Diagnostic and Statistical Manual of Mental Disorders), there no longer IS an Asperger’s diagnosis.   There goes the label.  The label we just worked so hard to determine.  There is some hubbub around this change.  Some fearful.  Some thankful.  Some identify so strongly with the label and have taken it on as a part of their being.  God, I get that.  Part of me feels like I should be more concerned with this change.  Maybe once I know more.  But for now, I go back to the reason for getting that label to begin with: help. 



 

This fall we finally had Ben’s first IEP (Individualized Education Program) meeting.  After having heard and read multiple horror stories, I won’t lie…I went in with guns a blazin’.  Ready to fight for Ben.  Not a bad thing, I suppose.  Turns out, after all, we got pretty lucky.  Our school psychologist is a phenomenal caring and very thorough woman.  His teacher is bright, observant and very flexible.  His speech therapist is fabulous as well.  In first grade there aren’t many academic accommodations necessary but they’re now doing social language therapy with him.  They have purchased a weighted blanket for his classroom.  His teacher has made adjustments to her timed tests for Ben.  They want to see him succeed too.  It was quickly apparent how fond they all were of my baby.  He makes them smile.  He makes them proud.  They look forward to engaging with their “little old man”.   I know for certain not all families can say they’ve been blessed with such resources.   I’m grateful.  Completely.  Truly.

So for some, it’s the label.  For me, it’s access to resources.  For Ben…well for him, simply put, it’s about having a good day.   He doesn’t know what Asperger’s is.  Whether the label exists or not he DOES know when kids aren’t nice to him.  He knows when they don’t want to play what HE wants to play.   He knows when his teacher is frustrated with him.  He knows when he just wants to barricade himself in a corner and can’t.  He knows he wants to bring home a good citizenship grade every day.   More often than not, he doesn’t.  He typically spends our ride home explaining what his warnings were for.  I work so hard to reassure him that the grade he gets each day for his behavior doesn’t equal his worth.  He spends his afternoon decompressing, reading, playing video games just to forget the chaos of the classroom.  He often goes to bed begging me not to make him go to school the next day.  And I smile, and kiss his sweet face and tell him tomorrow is a new day.  A new day with a new chance.  A new chance to make friends…to finish the math test…to not put his hands on his friends…to not get upset about eraser marks on his spelling test…to not cut in line.  It’s worth getting up every single day to get that chance again, isn’t it? 

 

Decompressing with some Angry Birds after a rough day at school.

 

This is one of many shots I've captured of him
running up the school steps in the morning.

He thinks so.  Despite his frustration and fear each night at bedtime, that boy rises with determination.  Not always with a smile…typically, he’s actually quite exasperated from dealing with me by 8am and ready to get the day started.  And THAT day, EVERY day, starts with this boy bounding, dare I say sprinting, down the sidewalk and up the steps to his school doors.   And every day it gets me…with that damn lump in the throat.   Despite his daily difficulty and never-ending struggles just to get from 9am to 3pm he attacks the day with such fervor that I find myself sitting in my car…watching with tears.  Admiring his enthusiasm.  Ignoring the impatient drivers behind me creeping closer to my bumper.  Asking myself each time…”why don’t I do that?”  Why when I get up and move myself to prepare for the day do I not have that same resolve?  To face my anticipated struggles head on…determined to take advantage of new chances and a fresh start?   Some days watching his determined, stinky little self race his brother to the top of the steps really makes me want to do better.  To be better.   To run toward MY day.   And I am grateful for every new day…every fresh start. 

Do you run toward YOUR day?