Friday, September 20, 2013

Labeled - Life Since Carter's Diagnosis

When Carter received his official autism diagnosis two months ago, it was one of the hardest days of my life. It's not like I didn't know it was coming, but there is something so devastatingly final about being handed that report. 

My mother in law tagged along when I took him to this last session at the Vanderbilt Childrens Hospital in Nashville. Autism has never existed in her world and it's becoming clear that it never really will. It's simply an empty word to her, used to describe all of the "bad" or "odd" behaviors coming from my child that seem to be beyond my parenting skill. 

I watched him through the grueling five hour assessment and prayed that he would do something, anything, that seemed normal...that would shatter the stereotypes associated with kids like him. He didn't though. He hid under a chair when the doctor tried to talk to him, he began punching himself and throwing/biting his blocks when his Lego tower came crashing down, sat paralyzed with fear when asked to sit at a table to complete a puzzle. He ran to the corner of the room, rubbing his face repeatedly on the ground to feel the texture of the carpet, never once did he look at the student who was assisting the doctor with the assessment. When the student excitedly praised his ability to draw and attempted to hug him, I had to intervene, quickly explaining that too much praise and excitement will cause an instant meltdown. And the hugging? Please. She must be new at this. She looked at me like I was crazy, like I was cruel for depriving him of the praise. How do you explain to someone that there are only a handful of people in the world who Carter has let in his inner circle...and even we have to walk on eggshells, being careful not to disrupt the fragile environment inside him. 

Carter lives in a body that is constantly trying to sabotage him. The things that need to cause him pain (heat, falling, cuts) have no effect on him leaving him dangerously prone to injury. Yet the smallest of things like a tag in the back of his shirt will have him screaming in the floor like he is on fire. The sound of the vacuum cleaner is strangely soothing while an airplane in the distance is deafening. His muscles are weak, causing him to stumble and his brain fights every second of the day to keep up with processing these magnified sensations. 

By the end of the session, the tension in the room was palpable. Carter had clearly had enough and was now on his kneeling in front of my chair with his head buried between my knees. When Dr. Peters said that yes, my child very clearly was being diagnosed with ASD, I wanted nothing more than to hug my baby and cry. Part of me was relieved. I knew that with this diagnosis, he would be guaranteed the services he needs in school (our insurance only covers so many private therapy sessions and those were running out fast). All of the concerns I had over the past two years had been validated. All of the times my husband told me I was overreacting, that Carter was just being Carter, I was right to have been worried. Yet, the other part of me, the part that knew from this day forward, I would have to adjust my expectations, that I was taking on the job of raising this precious little out of sync boy...that part of me was crushed. I remember the overwhelming feeling of responsibility when my oldest son was born. I was responsible for nurturing a human life. That day was nothing compared to this. Here I am, a veteran mother of three and I didn't have a clue what to do next. I desperately wished that (any second now) someone would walk in the room with step by step guidelines of what comes next. Instead, we were dismissed back into the real world with smiles and polite handshakes. 

I walked to the parking garage in silence, squeezing Carter's hand tightly in mine because he likes the pressure. My mother in law walked along beside us, happily chatting about Lord knows what. I did my best to block her out. How could she not see what a big deal this was? As we made our way back to the interstate, she called my father in law.

"Yeah, yeah, we had a good time." (We did?)
"That doctor said Carter has Autism." (This isn't a casual conversation. It's not like he has a cold)
"Courtney said that's okay because he'll get money or something for school." (No! He doesn't get money! He is now guaranteed the services he needs in school because we make too much money for him to qualify without that diagnosis being official! How many times must I explain that?)
"He'll grow out of it." I slammed on the brakes. 
"Oh, I have to go so Courtney can focus on driving. I'll see you in a few hours."

Neither of us spoke another word on the way home. 

When we finally made it home that night, I deposited Carter's sleeping body on the couch (he won't sleep unless I'm right there) and sat beside him, handing the thick black folder full of Autism information and resources over to my husband. He opened it, flipping through a few of the pages, then scooted it across the coffee table saying, "Nothing in that folder is going to tell me who Carter is." That was our first and last conversation about his diagnosis. 

Later that night, I laid beside Carter in his bed, anxiously awaiting the moment where his breathing slowed and I felt the tension relax from his body. Only then would I know that it was safe to slip away to my own bed...and least until he awoke and realized I was gone. I stroked his hair and cried. I cried because I knew that my boy would have challenges to overcome that I could not begin to imagine. I cried because the overwhelming responsibility of being his mother seemed far beyond my ability. I cried because it seemed so unfair that such a bright little boy was hidden behind the walls of ASD. Then I prayed, because it was all I had left. 

The days that followed were filled with google searches for Autism resources in our community. I purchased books on Applied Behavioral Analysis even though Carter is fairly high functioning and ABA is usually used with the more severe cases. I obsessed over every detail I could find that might make Carter's life easier. The more I searched, the more I was stunned to find that we had already implemented many of these strategies in our home. We use picture schedules, we even have our own schedule for bedtime. I'm wait patiently while he rubs his cheek on the carpet. I was not horrified during the third week of school when he teacher mentioned that he was still refusing to speak and had even peed/pooped in his pants every day because he was so upset after I had left. When he's upset, I quickly offer him my earlobe because, for some reason, rubbing it is the quickest way to get him to calm down. I quickly realized that the Carter that I love and adore today is the same precious boy I drove to Nashville the morning of his diagnosis. His diagnosis didn't change a thing about him, it has only helped me understand him better and I am grateful for that. 

A couple weeks ago, I took Carter to Applebees to eat lunch. We got there right as they opened and the restaurant was quiet and deserted. Perfect. Carter whispered to me that he would like a salad and broccoli with milk (he loves veggies). When our food arrived, he happily started munching away. I sighed with relief because it looked like we were going to make it through an outing without any sort of a meltdown. Then, they turned the music on. The overall change in noise level was almost imperceptible, I probably wouldn't have even noticed if Carter hadn't gasped and choked on his food. He frantically demanded to know where the music was coming from and I desperately searched the ceiling for the speakers. I had already lost him though. He slipped under the table with a bloodcurdling scream, his hands over his ears and started writhing on the floor and sobbing. I knew we had to get out of there fast, but at the first sign of trouble, our waiter had bolted for the kitchen. After what seemed like an eternity, the waiter finally emerged with a to-go box that I dumped Carter's salad in. I threw some cash on the table because the waiter was still standing there, dumbstruck, and apparently wasn't going to get our bill. I shrugged and said, "Sorry, he has autism and the music is really bothering him," and we headed out the door. If there is one thing that I hate most about all of this, it's the stares and muttered comments from the judgmental strangers who have no idea what your child is dealing with. They never stop to acknowledge or understand the terrified little boy who just wants the music to stop, they just eat their 2 for $20 meals in their own quiet misery. 

I worry incessantly about Carter's future - whether or not my hopes and expectations for him are realistic. I pray every night that one day, others will be able to see the amazing little boy behind the quirks and outbursts, and will grow to love him as much as his daddy and I do. I pray that he finds his way through school. Autism, after all does not leave an obvious physical mark like Downs or other disabilities and it is so easy for ASD kids to simply be labeled as "bad". Especially if they are on the more moderately functioning end. I long for the day where our family hits our stride and we can put the word "Autism" on the back burner. I pray for a day where the hours and hours of therapy can end because Carter is ready to face the world without it. I pray, with every thought that crosses my mind and every decision that I make, I am doing what is best for Carter and not for myself. I pray that I live up to the enormous task of being the mother that he deserves. 

Carter has taught me what it truly means to be a parent - what it means to give every bit of yourself over and live for another person. It's so easy with Jake and Natalie (his brother and sister) because everything seems so black and white. I love them with all of my heart and they're growing into incredible little people. With Carter, I'm parenting on a completely different level, something that is not possible to understand until you're doing it yourself. Every day is a challenge, scary even, but I start every morning with one goal in mind: To let the little boy inside of Carter be the happiest he can be. 

1 comment:

  1. Awww..Courtney got me crying at work. Keep doing what you're doing---I think you're pretty damn close to SuperMoM :)