As I sit here and type out our story, I am trying to think of the most hellacious and rewarding moments of my life as a mother to a special little boy. That same little boy who is currently dressed in jeans, a sweatshirt, a church vest, Cars gloves, and a ninja mask running through the house screaming at the top of his lungs jumping through the air and swatting with a sword at the dust bunnies falling from atop the cabinets as he breezes by. In order to relay all of those moments to you I would need to write a novel about life with my Aspie. He is just a boy; he is a wonderful, impatient, big hearted, difficult, crazy five year old boy who has filled my heart with love and caused it to ache. Whoever said that big girls don't cry didn't raise a child with Asperger's.Rylee was diagnosed with Asperger's Syndrome and ADHD at three years of age. My younger brother also has Asperger's, so when I started noticing some of the same symptoms in Rylee as I had seen in my brother, I decided to take action. The earliest signs came before his first birthday. The motor development and coordination milestones were delayed. He could throw a ball, just not in any particular direction, and using utensils was out of the question. Rylee didn't talk like other children his age, his first word wasn't "mama" or "dada"; it was "dog". Instead of using cute little words like "yummy" and "yucky" it was "delicious" and "disgusting". Any small change in his routine were cause for major meltdowns. He was so OCD about EVERYTHING; juice went in the yellow cup and milk in the blue one and if an attempt was made to switch that up you would have thought that his whole world was crashing down around him. He couldn't interact or play with other children. McDonalds play place? Forget it. Overstimulation from trips to the mall or grocery store ended with both of us in tears. No circus, no monster trucks, no fun family outings. The loud noises and bright lights sent his little brain into a tsunami of anxiety and fear. He took everything very literal; if you told him it was raining cats and dogs he would look at you baffled and try to explain to you that it was impossible. My brother wasn't diagnosed until he was fifteen resulting in a lot of heartache and headache for my parents since neither they nor his teachers understood why he acted and reacted in the manner he did. He was on the verge of being expelled from school, as his teachers had simply given up on him. I didn't want that for my son; so we had him tested, if for no other reason than to confirm my suspicions and ensure that I had that piece of paper to shove in the faces of his future teachers when they attempted a reenactment of my brother's early school years. Unfortunately, that piece of paper was just that: a piece of paper. It held no weight when it came time for him to get tossed into the sea of education along with all the other "normal" kids.
Preschool was a God send for Rylee. He had a WONDERFUL teacher who did her best to understand him and accommodate him. She allowed him to have his own routine and took the time to slowly mold his routine into one that could suit the entire class. She didn't sweat the little things. If he wanted to build a moat around the classroom bunny every morning when he first got there and leave it up until class was over, she was okay with that, and even ensured that none of the other kids messed up the moat. If he chose to carry a magnifying glass around with him all day or preferred to use a pen instead of a pencil because of the mess that a pencil would make when it smudged she would choose the lesser of two evils and just let him do it. By the end of his preschool year he was following the same routine as all the other kids, but most importantly, he was actually playing with them! Between her efforts at school and my efforts at home, he had begun to overcome the social anxiety that plagued him. When it came time to move up to kindergarten, however, things were much different. Before the first nine weeks had ended, his teacher had decided he would need to repeat the grade. She wouldn't take the extra time to sit with him and understand that he couldn't learn like the other kids did. He was lost in the cracks before he even got a chance. I had just given birth to Rylee's baby sister and made the decision to not return to work. Since I was home, and medicating my child wasn't an option, we started to homeschool. It hasn't been easy.
As a mother you want to believe that you know what you're doing. You have everything under control. You wake up every morning, feed and clothe your children, complete the daily chores and schooling, and finish the day with dinner, baths, and a bedtime story. At least that's the goal right? No one wants other people to know there is a dark side to this perfect life of a stay at home mom. The truth is that there is such a place, and there is a dark side to everything. Rylee is just like all the other five year old boys out there. He likes bugs and trains and playing with swords. He eats his vegetables and loves to play outside. He likes animals and building things with legos. He also screams randomly and without cause. He lives in his own world where he dresses up in costume and pretends to be anyone but himself. He has major meltdowns over something as small as a sandwich whose crust I forgot to cut off. He lacks empathy and doesn't understand that words hurt. He can't tolerate loud noises and big changes. I second guess the thought that I know what I'm doing when he yells that he doesn't like me and tells me to go away, or when he covers his ears and hides in his room. I wonder what I've done wrong when he screams and hits himself or when he throws himself on the floor because the accessory on his ninja turtle wont fit back in just right. When you walk on eggshells, one is bound to crumble eventually. Sometimes I scream back and hate myself afterward. Sometimes I sit and I just cry. The thing is, raising a child with special needs, like my son, is a roller coaster of love and hate. I love the things that make him unique, but I hate that people think he's not "normal". I love his imagination and his big heart, but I hate that his imagination sometimes takes him so far into his world that it's impossible to bring him back to reality. I love his quirks and his out of the box mind set, but I hate that he absolutely can not understand me at times, even over the simplest of concepts. Being home with him all day, every day, has challenged every aspect of my existence. Rylee doesn't know the meaning of "hurry up", but in turn has forced me to slow down and appreciate the small beauties God placed on this earth that I would have otherwise overlooked. He prefers to function in a realm outside reality and has opened my mind to a whole new world of possibilities. I can't say that the thought to medicate or just throw him back into the school system just to catch a break haven't crossed my mind, but they are thoughts that quickly vanish when I realize that God gave me this job for a reason and all I can do is keep trying. Honestly, I wish there were more Rylees out there: more people to make others second guess their decisions and make the world slow down a little bit.Do you have a story or post to share about raising a child with Asperger's? We would love for you to link it up below!
