By Holly Standfield
Five months after we relocated to central Florida, I had joined a local MOPS (Mothers of Preschoolers) group in hopes that I would make some friends and my 2 year old, Bailey, would acquire playmates and flourish. We had not been around many children her age and I was amazed at how communicative the other children in our group were. I honestly wondered if their parents were teaching them to write speeches.
She was, and is even more so now, a brilliant child. She read her first sentence just after turning two years old and knew all of her shapes, colors, letters and could maneuver around a tablet better than I could. She knew the names of thirty dinosaurs and she was very organized and nondestructive. She could point objects out in a photo, she could sing songs and literally recite full episodes of Caillou. She had a vocabulary of over three hundred words but somehow, she could not form a sentence longer than two words long. “Want milk.” “Want that!” She also repeated things to the point of wanting to pull your hair out. Others would say it was normal toddler behavior. “That’s how they learn things!”
Since she had this obvious wealth of knowledge, I never once thought there was anything off. I just thought she enjoyed learning the incredibly challenging before the easy stuff like toilet training. Every parent and parenting book will tell you a million times over that children will come to do the things they are delayed in within their own time. What they don’t tell you is that some of those very delays mean something is amiss.
In late September of 2012, I took Bailey to the pediatrician for breathing problems. Her oxygen levels were low. They called an ambulance and brought in an oxygen tank and proceeded to put on the breathing mask. She flipped out. So much so that the pediatrician began to ask questions about delays, eye contact and certain reactions that she has to sounds, smells, certain textures, etc. Does she have a sense of humor? There was mention that she had seen behavior like this among children with Asperger’s. It had never even crossed my mind.
Here I am, sitting in an exam room waiting on an ambulance to arrive, being told that she is being hospitalized for pneumonia and “Oh! By the way, I’m not a behavioral specialist but she probably has a form of Autism.” I remember the nurse bringing me a list of contacts for child development centers just as they were closing the ambulance doors. The ride seemed to take forever. It was THE absolute loneliest moment of my life. She was funny! She is a genius! Nothing is wrong with her. But I knew deep down that the doctor was right. I just never had anyone point it out so matter of factly.
Two months later, she was diagnosed with High Functioning Autism and Sensory Processing Disorder. She was three and a half years old. She needed to be placed in the school system and also occupational therapy, physical therapy, speech and behavioral therapy (also known as ABA).
How did I not see the signs? She was such a sponge on the big things that I didn’t notice the small, most important milestones. I hadn’t given a second thought that she didn’t start climbing things until almost 3 years old. Immediately, I was looking for something or someone to blame. Was it the environment? Was it the vaccinations? Was it passed on from me? Or the relatives on both sides that have schizophrenia? We participated in a chromosome testing in hopes it would provide some information on where it went wrong. Everything came back normal.
There are no instructions when you get a diagnosis for Autism. No person diagnosed has the same attributes or red flags. Experts know techniques to help out through forms of therapy but there is no cure and no clear path made for you by the diagnosis. Will she regress? Will she be able to live on her own when she’s an adult? Will she be a contributing citizen? Questions, questions and more questions. I knew I had to put on my big girl panties and do whatever it took.
My feelings when I left that office were of defeat and hopelessness. I was met with the same feeling with every phone call made to the insurance company when they would say that they don’t recognize Autism as a disorder needing the therapies that were recommended for her. We fought for 7 months to gain speech therapy and fought another 5 months for the behavioral therapy which starts later this month. Somehow, we still have not been able to obtain occupational therapy. I have taken classes offered by CARD (Center for Autism and Related Disabilities) services and I have made my own home into one giant daycare/visual therapy setting. A year later, the tantrums are less and she is thriving but I still feel that defeat and hopelessness at least a couple of times a day. I also find myself using the same calming techniques that we use with her. Breathing HELPS! "Smell the roses. Blow out the candles."
Bailey started school last April and within the first 3 days, she was speaking 8-10 word sentences. They weren’t perfect but they were coming from her tiny voice. We started having conversations that only lasted about 30 seconds at a time but she was speaking and no matter who I was talking to, I would immediately divert my attention to Bailey just to hear whatever beautiful message was coming out of her mouth.
Her brilliance continues to shine. She is currently 4 ½ and has been tested at a second grade education level. She still reads any book she can pick up, knows her continents, all of the states, most of the countries, more dinosaur names than I can even count just by looking at them, and is currently learning the periodic table of elements. She is extremely visual and has a fabulous sense of humor. However, she is still not even close to potty training. We are faced with the possibility that she may not move on to kindergarten if the potty training doesn’t take by next school year.
My husband travels at least 85% of the year and this leaves me to handle all of this alone for the majority of the time. Life gets lonely. You feel overwhelmed every single day. I know things could be worse. She could be nonverbal. She could be physically disabled. She just needs some potholes filled and she cannot do it on her own. Nor can I do it all on my own.
Holly shares her day-to-day concerns in the next post "What No One Tells You."