Tuesday, July 12, 2011

The Light at the End of the Nightmare

Today I am going to get a little more deep and personal than usual, but it is something I just have to share.

Just over 5 years ago, I delivered a healthy baby boy. He was absolutely beautiful; a perfect combination of me and Jim with olive skin, almond eyes, stick straight hair and a dimple in his right cheek. Like I said, perfect.

He grew healthy and strong, and the three of us took many adventures together. He was charming; his laughter made all the girls coo and even grown men became mush under his spell.

At 13 months he started walking, and we couldn't keep up! We would go to the park and I would chase him and chase him, we'd play "Peek-A-Boo," and ride the swing. We ate spaghetti for dinner with green beans several nights a week just because they were his favorite.

At 18 months everything changed. I took him into the doctor for a well child check up, and the doctor expressed concern that Landon hadn't started talking yet. Up until that point I hadn't thought much of it. Then we started noticing other things about Landon. His food preferences became slimmer and slimmer, he cried when he heard loud sounds, and became scared of many different tactile sensations i.e.; grass on his skin, or a bowl of uncooked rice, the texture of yogurt, and so on.

We enrolled him in an early intervention program to help. That's when the word first started coming out: Autism.

I remember putting him to bed that night, seeing my baby for the first time as the world saw him: Broken. Abnormal. Different. Imperfect.

I crept back into his room after he was fast asleep, and held him close. My baby, the one I held in my arms that very first day...everyone thought he was broken. My mind couldn't wrap around the concept. Was it my fault? 

Every hope and dream I had for him and his future washed away that night, only to be replaced by fear. All I could think about was, Does he even have a future? Is everything ruined? Most importantly, What is going to happen to him when we die? There are no words that could properly express my broken heart, and how scared I was for my son.

I held my baby tight that night and cried.

After early intervention, he went to a Special Ed Preschool. He made improvements, but nothing substantial. As he got older, he still didn't talk, only using maybe 15 words regularly at age 4.

It's amazing how suddenly everyone became an expert. Parents started to look at us with bewildered, even accusing stares when they heard him jabber, or when they saw him cover his ears and cry at loud noises. We started to feel pressure to get him diagnosed. I was even told by teachers and parents alike that we didn't love our son, we were neglecting him and living in ignorance. But something deep inside us felt it was wrong. We felt we needed to give him a chance.

The pestering got worse. I took him to see a pediatrician right after we moved here who told me that I was not doing enough to give him the care that he needed. We searched desperately for programs that would help him, and were disgusted by their lack of their organization and professionalism. As we continued to look for answers, we received even more bullying from others. People at the park, and even church members informing us that there was something wrong with Landon and there were programs for him if we would just get him diagnosed.

Feeling emotionally battered, I called a friend and absolutely fell apart over the phone. She told me one the thing I really needed to hear: "Landon is going to be just fine, because you will make sure he will be. He has you and he has Jim, two of the best parents in the world, and you will make sure that he gets taken care of." She probably has no idea how I have clung to those words since then. 

We accepted that he was likely Autistic, and forced ourselves to come to terms with it. We went back and forth on what was best for Landon, spent a lot of time on our knees praying, and ultimately we still felt that it still wasn't right to have him diagnosed. It wasn't only about the label, it was about medication, and trusting professionals when our instincts told us not to.

And then we finally received an answer to our prayers, after thee and a half years of endurance. We found a private program that specializes with kids like Landon, children who have SID, developmental delays, Autism, learning disorders, ADHD, brain trauma and so on.

We took him in to be evaluated for treatment yesterday, where he got an official diagnosis: Sensory Integration Dysfunction and Developmental Delay. That's it, and it's completely and non-medicinally treatable! He is otherwise age appropriate, and in no way Autistic.

Both Jim and I have felt a flood of emotions in the past 24 hours. For the first time in a long time, there is a spot of light at the end of this nightmare! Our son has a future! He can do what ever he wants with his future. The world is his to take on, and with that smile of his, he'll conquer it!