"Maybe Ifs" on Diagnosis Day

Angry. This morning I woke up and I was so angry. No, not angry… Furious, hateful, irate... 

My alarm went off, I kept my eyes shut. I wasn’t going to open them. Kelson wasn’t awake yet. He didn’t need to go to school. We’d just sleep in. We’d just hide from the world today. We’d just pretend nothing was wrong with anyone. We’d just pretend that everything was just fine. You see, I got a phone call last night informing me that all of Kelson’s testing had been “scored” and the school psychologist is now ready to “go over it” with me. This morning I was weak. I didn’t care. I turned off my alarm, covered my face with my blankets, I rocked myself back and forth, I cried and cried and cried. I tried my hardest to fall back asleep but I couldn’t escape the ugliness in my head. I thought;

Maybe if I hadn’t been so young… Kelson wouldn’t have autism. 

Maybe if I had focused more on Kelson and less on my own education, Kelson wouldn’t have autism.

Maybe if I hadn’t worked so hard… Maybe if I had worked harder… Kelson wouldn’t have autism.

Maybe if I had more money or more time… Kelson wouldn’t have autism. 

Maybe if I hadn’t been “too tired,” “too stressed,” “too busy”…. Kelson wouldn’t have autism. 

Maybe if I didn’t have 2 more kids… Kelson wouldn’t have autism.

Maybe if I had been more stable and moved less… Kelson wouldn’t have autism. 

Maybe if I had breastfed him.. Or maybe if I hadn’t vaccinated him… Kelson wouldn’t have autism. 

Maybe if I hadn’t spent so many years hating God… Kelson wouldn’t have autism. 

Maybe if I hadn’t been so weak… Kelson wouldn’t have autism. 

Maybe if I had been a better mother… Kelson wouldn’t have autism. 

Maybe if I hadn’t been so selfish… Maybe if I’d given him up for adoption (like so many suggested I do) to a more deserving, loving, and prepared mother… Kelson wouldn’t have autism. 

Maybe Kelson doesn’t have autism… No, maybe if I hadn’t been in denial for so long… Kelson wouldn’t have autism.

All emotional irrationality aside, it didn’t much matter this morning. What was done was done and here we were, finally being forced to face this long awaited “judgment day.” I had envisioned the day that an actual diagnosis was made being a day that we sat down and outlined all the mistakes I have made as a mother, a day where I promised that I had matured and that I am a much better mother than I used to be, and a day that would negatively define my innocent child for the rest of his life. A part of me hoped that I was making it all up, that I would walk in there and the psychologist would roll his eyes and tell me that I am being overdramatic; my child is absolutely fine… I guess I knew that wasn’t going to happen though.

Moving along. Kelson got up at about 9 and came into my bedroom dressed and ready to go to school. I drug myself out of bed, got the little kids dressed, and strapped them all into the car. I drove slower than usual. I wasn’t ready. I tapped the breaks a few times as we passed several little dirt roads that I seriously considered turning down, just to avoid going to the school. I have driven this road a thousand times but today, it seemed so short. In no time, we were there. Kelson hopped out of the car and walked into the school. I had to take Kaylee and Grant to my mom’s house. I wanted so badly to reach out and grab onto him. I wanted to beg him to stay with me! I didn’t want him going in there. I was angry. I hated school. I hated psychology. I hated myself. Mostly, I HATED AUTISM! I couldn’t see how any of this was fair. I couldn’t understand who the hell anyone in that building thought they were or why they thought they had the right to decide who is sick or not sick, who is crazy or not crazy! How dare they “score” my child. How dare they judge him, me, US!

Once I finally returned to the school for my meeting, my eyes poured tears at the site of the playground. I just wanted him to be normal. I just wanted him to play and bask in the sweet innocence of childhood like I did on that very playground. It wasn’t fair. It isn’t fair. I nodded my head and quietly whispered the occasional, “Okay… Yeah” as the psychologist went over the test results. It took everything I had to hold in my anger, my hatred for the disorder. Once the word “autism” was finally said out loud, the psychologist gave me a strange look and said, 

“You didn’t have much of a response to the word, you must have already suspected autism.”

I wanted to yell, stomp, and cry… Yes. I had “suspected” it. Yes. I have known for some time that my son was struggling. I tried. I begged. I pleaded. I asked over and over again for help and was repeatedly told, “Wait for kindergarten.” I spent an entire summer anxiously awaiting and dreading this very moment. YES! I KNOW MY SON HAS AUTISM BUT FOR SOME ABSURD REASON, SOMEONE HAS TO HEAR IT FROM YOU BEFORE THEY WILL DO A DAMN THING ABOUT IT!

As he went on about the test results, my mind wondered back to a time, 3 or so years ago, that I took my sweet little Kelson to a counselor. I was in the middle of a divorce and Kelson’s behavioral problems escalated to an all time high. He was out of control. Worse though, was that I was out of control. Neither of us could control our emotions or our anger toward the crappy hands we had been dealt. I sat with this counselor and Kelson for an hour talking about the problems we were having. She had no answers. She offered no advice. She walked me out to my car and Kelson started one of his tantrums because he didn’t want to buckle into his car seat. She smirked and I so vividly remember watching the words,

“I don’t know what you are going to do. All I know is that he is never going to be an easy child” come out of her mouth.

Today, after finally getting through the most difficult conversation that I have had to have in my entire life, I have only 2 words for the counselor who saw Kelson and I 3 years ago, SCREW YOU! He is not a “difficult child.” He is not damaged and neither am I. He is going to get through this. He is going to be something great because there are good, caring people in the world like Mr. Loveless (the school psychologist), Mrs. Hulet (Kelson’s teacher), Mr. Heaton (Kelson’s principle), and Ms. Munz (sp? Special Ed teacher) who are watching out for him now. As hard as this day has been, I am more grateful than ever for the Iron County School District and Escalante Valley Elementary. FINALLY someone is here to help us. Tonight, I may feel just as lost as I did this morning but it is so nice to know that I am no longer alone in this battle.

The term “autism” still leaves a bitter taste in my mouth and a soreness in my heart. He doesn’t deserve this. It isn’t fair. Life just isn’t fair sometimes. But he is alive. He is strong, healthy, and happy. He is my hero. My tiny, knight in shining armor because tonight, as I tried SO hard to hold in the tears that wouldn’t stop coming; he held my hand, looked into my eyes, giggled a little, and said, 

“LET’S TURN THAT FROWN UPSIDE DOWN AND MAKE A MUSIC BIDEO (video)”

…so tonight, the evening following the day that my deepest fears were confirmed, we made a music video to Lady Gaga’s Born This Way.

Someday, I will look back on this day and I won’t remember the terror, the anxiety, the anger. I will remember the way we danced… how we laughed… and laughed… and laughed…  

F is for Family

Every mother cries on their child’s first day of Kindergarten. Not every mother is consumed by terror for months, spending countless sleepless nights worrying about their child’s experience in school. I can’t begin to describe the horror I felt when I imagined my sweet Kelson at school. 

I distinctly remember the moment that my fear for him in Kindergarten really hit me. We were at the carnival that the Search and Rescue puts on every year. I was pregnant with Grant. My feet were so swollen and my back ached but it was the first time in weeks that I had felt good enough to leave the house. We were having the best time on all of the rides. Kelson and Kaylee’s smiles took over their entire faces while their chuckling laughs barreled out of the twirling strawberry ride that Eric’s tireless arms spun around and around and around until I thought we’d fly right off the metal bars that were holding us down. The kids had been on almost every ride but there was one that they had been wanting to go on. I don’t remember which ride, I just remember that Kelson didn’t get the seat that he wanted on it. I stood paralyzed as my courageous husband climbed onto the ride to carry off my screaming boy. He was having one of his fits. I watched as Eric took him away from all the rides and let him sit in the dirt and throw his tantrum. Kelson rolled in the dirt, smacked himself in the face over and over, he kicked, he screamed, he cried… My heart breaks for him every time that he loses control of his emotions but this time it was different. I looked around at all of the people that stopped to stare at him. I could see them whispering and even making fun. I couldn’t control my tears as I walked over to my baby laying in the dirt. In that moment I was so envious of him. I was as angry as he was. I only wished that I could lay down in the dirt next to him, kick and scream out at the top of my lunges, “THIS ISN’T FAIR! HE DOES NOT DESERVE THIS! PPPPLLLLLEEEEEAAAAASSSSSEEEEE SOMEONE HELP MY BABY!” …but I couldn’t. As much as I wanted to grab the faces of all the people staring and whispering and tell them, “He can’t help it! Please don’t stare at him like he’s broken or whisper about how we should keep our child under control!” All I could do was hold Kaylee’s hand, listen to her tell me how unfair it is that we have to leave the carnival, and walk behind as Eric carried our kicking and screaming boy to the car.

The carnival was a particularly bad tantrum because, although he was having a blast, he became way too over stimulated but I remember, on our walk back to the car, thinking that Kindergarten is coming soon… and I don’t know if he can handle it. I cried and cried the days leading up to the first day of school. I couldn’t sleep. All I could think about was how much he was going to hate sitting in a room full of other people all day.

The good news is that he doesn’t hate school. He doesn’t love going but he doesn’t kick and scream about it. He loves learning the sounds of letters and he loves writing them out. Today’s letter was F and he drew a picture of our family. There are no words in the world to describe the joy that little picture brought to my heart. 

(Left to Right) Kaylee, Kelson, Mommy, Eric, and baby Grant (who, BTW he absolutely adores!)

After everything; after all the years of struggling to find where we belong, Kelson, Kaylee and I are finally home with Eric and baby Grant. In ways the reality that some of the life moments that are cherished as precious memories by other families never will be enjoyed by Kelson still hurts my heart… but other families don’t have a boy like mine. Only I have been so blessed. 

It's Just a Game

Life moves far too quickly for my taste. The days just zip by, and even when the nights seem to drag on, time is always ticking away and the tiny moments we can never get back are constantly passing us by. My body has been tired lately, as I have been making my way through the second trimester of my third pregnancy, and my mind has had its way of distracting itself with the little, insignificant stresses of life. I guess that somewhere in the midst of laundry, dishes, dinner, and bath time the last few months I have lost my way.

                Strange though, isn’t it? The way that something so small, as simple as a back yard game of baseball, can remind us how far we’ve strayed from our paths. This afternoon the kids were playing out in the yard and while I was mixing together some potato salad to go with dinner I was startled by a ground shaking “smack” against my sliding glass door. As soon as I realized that the sound was probably a rock, in utter frustration, I immediately started screaming at the kids to come inside. Of course, they didn’t listen. They were far too busy with their game. I walked outside to see my little 3 year old daughter tossing a baseball in the direction of her bat-wielding big brother.  He had his notorious naughty smirk on his face and I could tell that he was fighting back laughter.

                He stared at me glaring at him for a minute to see what I was going to do and eventually dropped his bat and yelled,

“KAYLEE HIT THE WINDOW WITH THE BALL!”

It was my instinct to yell and then punish, but instead I sat down and just let myself laugh and laugh. The two of them are the strongest team that I have ever come across. Their endless mischievous ventures are enough to make any mom pull her hair out from time to time but today this bond has got me thinking. How blessed are these babies to always have their best friend by their side? I can’t help but wonder when I forgot how blessed I was to have them by my side. I have taken the little moments for granted and somewhere, along the way, I have forgotten what makes life so incredibly beautiful.

I spent an hour outside picking freshly bloomed flowers off our tree and watching as Kelson and Kaylee shared their sweet, innocent, and loving friendship. As I sit here smelling the sweet flowers that we carried inside and placed in an old Spiderman cup, I am reminded that I can never get that moment back and if I had stayed inside to finish the chores, I would have missed it completely.

I still find Asperger’s Syndrome and Autism difficult topics to discuss but I have wasted too much time with hurt feelings and too much energy feeling defensive of my son and his differences from the rest of the world. I have to allow myself to open back up, even if it means a messy house and letting go of hurt feelings, because never again will I get to experience this day with these absolutely miraculous little souls.

Now, I imagine they are up to some kind of mischief so I had better go see but I will be back to writing about our journey with Aspergers soon because I am not ashamed of the miracle that my baby is.  

Autism and Asperger's Syndrome: He is NOT sick.

For as long as I can remember, people have been telling me that there is something tremendously special about my little boy, Kelson. There is something about him that I (and many others) have never seen in another human being before. I have been stopped in parks, grocery stores, and doctors offices by complete strangers telling me that my boy is special. He has always been a daycare favorite. His seemingly magical spirit has brought joy to so many hearts.

Kelson is, without a doubt, the strongest human being I have ever encountered in my nearly 24 years of life. He came into this world with the odds against him; being the child of an unprepared, uneducated, emotionally immature, and terrified unwed teenage mother. His biological father was not around. As if that were not enough, he was also born with gestational cataracts and endured complete blindness by the age of one. In his second year of life he courageously went through 7 different surgeries to remove the cataracts and place implant lenses in his tiny eyes. He never complained. He sat through the grueling and painful process of administering medications into his already hurting eyes. Later he was the most affected, innocent victim of his mother and step-father’s toxic marriage and bitter divorce. He had his seemingly stable life ripped out from under him. Through all of these trials; this sweet, brilliant, compassionate little being was the sole source of strength for his mother and the only reason she is still here, surviving today.

For years Kelson has held me together through trials I honestly didn’t think I’d survive with his obsessive schedules and premature sense of responsibility. He has taught me a sense of patience and compassion that I never could have comprehended had he not been my angel. Kelson has always been different. He has always been special. He is eccentric. He is artistic. He is beyond a perfectionist. He is precise and exact in all of his words and actions.

Friday morning I had a discussion with Kelson’s preschool teacher about a tantrum he threw in class on Wednesday. She mentioned that he shows several different symptoms of Asperger’s Syndrome and she suggested that I have him tested at the county preschool. All I could do was nod my head. This didn’t come as a surprise to me. This term has been used to describe my little boy before and I guess I knew this day was coming. I can’t escape it.

I kept quiet about this conversation. Maybe I worried that if I said it out loud, it would be true. I worried that others would feel pity for my situation and wonder how I was going to take care of a “sick” child, when in fact, this child has been taking care of me for years. I spent the weekend silently wondering why my heart was hurting and why my soul felt lost. For 3 years I have known that if given the opportunity, he would be diagnosed and labeled as a child “suffering” from Asperger’s Syndrome. Perhaps I’ve felt ashamed, like maybe I failed him. This morning I stood in the shower and cried for a half an hour because my fears for his future have become too much for me to bare. Once I pulled myself together, the first thing I witnessed was Kelson trying to help his little sister do her hair like Tinkerbelle. He kissed her on the forehead and said,

“You are more beautiful than Tinkerbelle.”

I grabbed them both and felt an unexplainable warmth take over my sad, lost heart. This was when I decided that I would write this. I will not be scared of Asperger’s Syndrome because NOTHING has ever made this beautiful child waiver from the miraculous strength within him.

There is nothing wrong with Kelson. Kelson is not suffering from anything. He is not sick. I am ashamed that I ever thought that maybe he was. He is a special kind of witty genius and is destined for greatness. He is different and I wouldn’t be who I am if he were just an ordinary kid. I wouldn’t change a thing about him. This baby was my miracle 5 years ago. So we will face and embrace his differences head on and I will do whatever it takes to make sure he succeeds because a mind like his would be a terrible shame to waste.