“Life is either a daring adventure or nothing.”—Helen Keller. As a parent we can either choose to look at life as a roller coaster ride. We climb aboard and learn that during our adventure there are ups, downs, twists, turns, high points and low points. We have little control of where the ride takes us, so you may as well sit back, put your hands in the air and enjoy the ride, because when it’s time to get off then the adventure is complete. When dealing with a child with special needs, whether physical, emotional or neurological, it can be overwhelming at certain times, and it may feel as though you are making very little headway. But there are those moments when you see the light of understanding dawn, and you feel it was worth all the difficult times.
Our first moment of hope was also our first moment of triumph. It was a long road to get where we were, and we knew we still had a long road ahead of us. I scoured the web looking for information on how to deal with a child like Andra. I wanted more effective ways to continue her progress, but all I found was technical information about dealing with children with the same needs. Most offered suggestions with medication, a lot stated that it would be a lifelong struggle and to just learn to live with the hand we were dealt. That was definitely not what I wanted. I wanted to know there were other parents dealing with what we were going through and successfully overcoming it. But there was very little of what I was looking for, so we were stuck making our own way through this adventure. We relied on our instincts and became our own child’s advocate. Many were trying to help by suggesting that we use medications.
Don’t get me wrong I do believe that advancements in medicine and medications have made phenomenal leaps in helping many illnesses and diseases. It is wonderful that there are cures because of medications and pharmaceuticals, and when used correctly they can be very effective. I don’t think that I could have made it through labor without the epidural administered to me, so I believe in medicine. However, I was also very aware that there is no medication out there today that can “cure” Autism Spectrum Disorder, OCD, Panic Attacks, Anxiety Disorder, Hypersensitivity Disorder or even JRA. There are only medications that can alleviate, lesson or minimize the symptoms. Knowing that made me realize that if we decided to use medications then we were only enabling our daughter to become dependent on them to relieve her symptoms. It wasn’t what we wanted. We chose a different alternative, we wanted to help our child learn to overcome her diagnosis by learning skills to help her cope and overcome her issues.
Shortly after our mini breakthrough, I noticed there were regressions and areas that were progressively getting worse. My hope for Andra waned. She was three and the sensitivity, especially to certain stimuli, sent her into terrible meltdowns. If the noise around her was too loud she held her hands over her ears and screamed, or hide in a corner still with her hands on her ears and rock her body back and forth to find some sort of comfort. No wasn’t just a no to her, it was the trigger for a full out rage in which she would bang her head on a hard surface or flail because the frustration was overwhelming for her. I wondered if she could ever truly be helped. I second guessed our resolve not to medicate. At one point, I was convinced that my husband was burying his head in the sand and refusing to acknowledge that she even had a problem. Thinking those thoughts regularly left me feeling alone and isolated.
But I pressed forward despite my misgivings. We worked closely with our early intervention program to assist in our efforts. We enrolled her in their preschool program, hoping the interaction would help her overcome some of the social awkwardness that had developed. There were areas that she lagged behind in her development in relation to her peers. She didn’t communicate with too many words. She was not potty trained yet, not because we hadn’t tried, but because she had found comfort in her diapers. She carried around a purple blanket because it helped her cope. She obsessed about her pacifiers because they soothed her fears. She didn’t interact with children she played next to them. Whenever you changed her routine it would send her into a panic and the resulting fit was her way of trying to re-establish order. Looking back, the little battle we had over the grass was only the beginning of a very long journey. It was a roller coaster ride marked with a lot of twists and turns, and I did not know how we were going to come out of it in the end.
The first day of class was hard because I was leaving her in unfamiliar surroundings with people she didn’t know. My biggest fear was that she would panic and the teacher wouldn’t know how to handle the outburst. Reluctantly I walked her in the classroom, placed her near the toys that interested her, kissed her good-bye and left. I could see the confusion in her eyes. I had barely exited the classroom when I heard her sobs. I picked up my pace and left her cries of “mommy” chasing me down the wide corridor. Safely in the confines of my car, I wondered if I had done the right thing. The thought nagged me the entire time she was in class. After much debating with myself, I went back to the school early just to take a peek, and assure myself that I had made the right choice.
I peeked in the window, and there she was sliding down the mini slide in the room. The other children played around her pretending to play house with the kitchen set. She happily went up and down the slide. She was in her own happy place, at least she was not still in tears. This was a step in the right direction. When we got in the car, I asked her if she had fun. Without looking in me, she repeated, “fun”. I was glad she didn’t scream or cry when we went back the next day. Every day I picked her up from school, she was by herself playing while the other children interacted with each other around her. Something seemed so unnatural about it. I had hoped by putting her in school she would learn to interact with the other children. But it was something that I pushed to the back of my mind, chalking up the social awkwardness to her age.
During the fall, Andra opened up the newspaper and in the travel section she saw a picture of Disney World. She absolutely loved everything Disney. She carried around that paper for days. One day she had laid it out on the floor by the stairs. My husband was walking down and noticed the paper blocking his path. He had seen her carrying around the paper for days, but didn’t realize how much it meant to her until that moment. She came running up to him and jumped up and down pointing to Mickey’s house. He smiled at her antics, and moved around her paper, patted her on the head and left for work. Later that evening, Andra laid the Travel Section of the paper out again, prominently showing off Disney World, in front of the door leading to the garage. My husband came in from work to find it again, and our daughter running up, jumping up and down, and pointing to Mickey’s house. It dawned on him that she really wanted to go there. He picked her up in his arms and asked her if she wanted to visit Mickey’s house. She eagerly nodded her approval and scrambled to get down and point to the paper again.
Needless to say, it was within a few days we booked a trip down to Disney. She was so excited when we got there. I could sense that she was becoming overloaded with all the sights, sounds, and various stimulations. We were settled in the room and she was so wound up she couldn’t nap. We decided that we would take the kids out on the grounds and explore. She was beside herself with excitement. My husband and I were excited that she was showing some clear emotion that was positive. Most of the time she was in varying states of panic that it was difficult to handle, but at that moment she was happy.
The next morning we ventured into MGM studios to see some of her favorite characters. Belle was her favorite character, and a close second was Ariel because the character was her sister’s favorite. There was no show for Beauty and the Beast until later that day, so we decided to see Ariel’s show first. We were one of the first in line. The excitement of being in Disney was still radiating through her as the audience for the next show moved into the central waiting area, I held her hand so she didn’t get lost or move away from me. It was when more and more people were gathered in the small waiting room that I began to feel her discomfort. She began to tug at my hand so that she could cling to my leg. I bent to ask her what was wrong, but she just shook her head. I stood back up and took hold of her hand. The lights dimmed and the voice on the loudspeaker boomed. It was all it took and then next thing we knew Andra hit maximum overload. We didn’t quite understand it then, but she was having an intense panic/anxiety attack. It was though the spotlight had focused on my child and me.
I felt a sudden flush of heat engulf my body from head to toe. Eyes trained in my direction, some looks of concern as I tried desperately to control my young child while she kicked and screamed, others peered in irritation as all of my attempts to control her were doing little to console or ally her fears. My concern and helplessness soon turned into irritation. Why couldn’t she be “normal”? Why did she have to throw these uncontrollable fits? My husband tried to help, but it was useless, and her noncompliance to our pleas and consoling only irritated him.
I couldn’t subject these other people to this behavior. Instead of staying with my family I took her out immediately through the exit door before we had a chance to get seated. My husband stayed with my other daughter because there was no sense in her missing her favorite character because her little sister could not control her outburst. I was so irritated, but mostly I was embarrassed by how her actions made me look as her parent. In hindsight I see the incident in a different light, but then I was just mortified. It took a while to calm her down, but out of the crush of the crowd, back in the light of the day, and away from the din of the people and loudspeaker she calmed. Back was the smile on her face and the excitement she had felt before the meltdown occurred.
It was then I understood the enormity of all Andra’s diagnoses. This wasn’t just a cold that was going to go away with time. These were issues that we would have to deal with, and she would have to live with for the rest of her life. The light at the end of the tunnel was snuffed out, and I could feel myself being dragged back down a deep dark hole.