The Wheels on the Bus Go Round and Round

Whoever picked the color yellow for the color of school buses was a genius. I love being able to spot them from afar. I would have picked neon pink but that may cause accidents!
 
Most parents get nervous at the idea of putting their child on the bus for the first time in Kindergarten. When you have a special needs child, that time usually comes a lot sooner than your heart is ready for. CJ had just turned 3 when our time came. I was terrified! Here's my little baby - barely 3 feet tall and not even 30lbs - in a giant yellow bus. It's funny how the "short" buses seem so little until you have to strap a toddler in it. Then its too big, the seats to wide, and the aisles too long! Couldn't they have personal chauffeured cars for special needs kids? Wait...that would be me right?

Having 2 kids in two different schools, both with the same start time, was proving to be a problem. One or the other was always late. So, I made the tough decision to let them ride their buses. Since CJ has sensory integration issues, I was very concerned about him dealing with the noises and vibrations of the bus. However, he was more than excited to get on the bus ...at first. I, on the other hand was snotty nosed and tear stricken. Call me crazy, but I followed the bus to and from the school everyday for 2 weeks just to make sure the driver wasn't speeding or worse, running off with my baby! I even traded cars with my mom and brother occasionally so it wouldn't look so obvious!

Our first bus driver was, to put it nicely, very unprofessional. She would do things like start moving before the bus aide had CJ fully strapped in, and was extremely rude over the phone. I realized that the quiet, shy personality I had would have to be tossed out the window to get things done. After a couple of calls to the transportation department, we had a new bus driver. He was a lot nicer and understood my fears and concerns. He would stay and chat for a couple of minutes if he had some spare time on his route, and that made me begin the process of trusting him more.

It's been 3 years since CJ started school now, and he had his ups and downs with riding the bus. Sometimes he would run to the bus excitedly, and other times, it scared him. It all depended on how sensitive he was that day to noises and touch. We're no longer on the bus, but thankfully, I have a flexible work schedule that allows me to play chauffeur to my kids (and a couple of others).

Acceptance

CJ was 3 with the IQ of an 18 month old. He was severely autistic and developmentally delayed in all areas: Cognitive, Social, Fine Motor, Gross Motor, Speech and Learning. He could grow up and live a fairly normal life or he may be totally dependent for the rest of his life. He may never talk. He may never learn to button his shirt.The child psychologist sitting across the table was telling me these things as my mom sat next to me rebuking the things the psychologist said in the name of Jesus. I didn't realize my face was covered in tears until one of the therapists in the room handed me a tissue. I sat there with CJ in my lap, trying to digest the words they were throwing at me, but not really understanding most of it. Occupational therapy...hyper and hypo sensitivity...speech therapy...no cause...Marcus Autism Center...IEP...sensory belt...support group...no cure. Every time they explained a reason why he fell on the Autism spectrum, my mom would say something like "That's a lie. I rebuke it in the name of Jesus." She was right! I didn't know what these ladies were talking about. That was not my baby they were talking about. 

That nagging feeling again... Deep down inside, past all the pain and denial, it was there. Acceptance. I just had to dig deep to get to it. I looked down at my son twisting a pipe cleaner and kissed him on the forehead. The meeting was over. They handed me brochure upon brochure, booklet upon booklet, books, websites and so much "take-home" information that we needed a bag to carry it all. Finding acceptance wasn't going to be that easy.

I spent most of the first few weeks crying, and people didn't understand why. "He's still the same CJ" they would say. "This doesn't change him." But I had to mourn in my own way. I had to mourn the future I had dreamed of for him because I knew that from this point on, our lives would no longer be the same. I had to mourn the word "regular" so I could accept and embrace this new word and world of "Autism."

April was Autism Awareness Month and CNN ran a week long special on Autism. All week I watched story after story about success stories of autistic kids. I heard parents tell their story of how hard the beginning was for them. I watched a special about an autistic boy who found his passion in basketball and used that passion to break barriers. Google became my best friend. After the kids had gone to bed, I would spend hours researching our new world, and watching youtube videos of autistic kids. The Autism Speaks website became my best friend. I registered for the annual walk for autism and sighed. If we were going to do this, we were going to do it the right way. I was not going to be one of those parents who sat back and let life happen to their kids. My kids were going to embrace their lives. 

Acceptance came Saturday, April 12, 2008, the day of the Georgia Walk for Autism at Atlantic station. As soon as we walked out of the parking garage and into the resource fair, tears started pouring from my eyes. I could see a little bit of CJ in a lot of these kids. Kids flapping, screaming, laughing hysterically, rocking, staring. You couldn't help but feel the love and acceptance in the air. Everyone here knew what I was going through on the inside. They didn't look at my son funny when he started jumping. Instead, they blew bubbles for him to hear his addictive laugh. There were families there supporting each other, sporting identical shirts of support. There were resource tents from companies that were dedicated to help families through their journey. My best friend was with me. We walked around taking it all in. I felt something changing in me when I heard a speech from an older kid who was autistic. This was a different world alright, but it wasn't that bad.

Someone walked by me and I read her t-shirt. It said "Autism Rocks! (And flips and flaps and squeaks and squeals and licks)." I smiled... I mean really smiled for the first time in months. We were home.

It's a new day

I've been listening to people tell me for years to put my experiences with my son to paper. I've also read a lot of blogs by moms raising kids with autism that are...to put it frankly, sugar-coated. There's no sugar coating here! I'll tell you what it's really like - from the days we all spend forever laughing for no reason, to the days I want to lock myself in the bathroom and cry.

Let me back up and give you a little background. I am a 25 year old single mom of 2 boys. My oldest, J, is 8 and the life of the party. Very typical kid...sports, video games, talking back, calling girls gross while giggling...all the "wonderfulness" that comes with raising boys. My 6 year old, CJ, is my special little angel and he's severely autistic. I'm not telling you what Autism is. Google it, it's 2011.

CJ was a different kid from the very start, but what child isn't? He was born in 2004 and minutes after he was born, he tried to climb out of the bassinet. I should have known then he would be special :) There were signs early on that he was dealing with something internally but hindsight is always 20/20.
In 2006, it became apparent that something was going on. He was talking a little, but his speech wasn't developing at the rate it should have been. He played in non-traditional ways. Imagine having a kid who's favorite pastime was pulling out the slats on window blinds and twisting them for hours. He also enjoyed tearing paper (we call him the human shredder), and pressing the on/off button on toys for hours on end.
Autism was everywhere on TV during this time. I was getting calls from friends and family telling me to watch specials that showed a kid that was "flapping/jumping like CJ does."

I was in denial. I'm Nigerian and back home, if something's wrong with your child, it's either your fault or the devil. Which means you either hide them away or take them to all kinds of pastors for deliverance. Besides, my son wasn't autistic! He didn't stare off into space like the kids on TV did. My son gave me kisses and loved physical contact. He didn't find patterns in newspapers, and he sure as heck couldn't play the piano at 2-1/2 (trust me, I tested him). My son was not autistic. Maybe he had a speech impediment. That's it! A speech impediment. I was going to take him to Babies Can't Wait (a program in our area for toddlers with developmental delays) and prove everyone wrong. That nagging feeling wouldn't go away though. Even when his pediatrician at the time reassured me that it was just him developing at his own rate, I couldn't shake that feeling that something was wrong.

4 months and numerous tests later, we had a diagnosis. Autism. It sat so heavily at the bottom of my chest. I cried constantly for a week. People would say things like "He's still the same child you've always loved" or "That means he's probably really smart" and it would just annoy me. This was my baby for crying out loud! Would he ever learn to dress himself? Would he ever tell me he loved me? Would he ever go to college? Find love? His speech was completely gone at this point and replaced with giggles. Truthfully, aside from God, his giggles were probably the only thing that kept me going at that point.

So there we had it. I was 21 with a 3 year old with Autism. What now?