I didn’t have to time to think about Andra’s multitude of problems. I had to get myself together and keep moving forward. If I wanted results then there was no time for breakdowns, and pity parties. This was the hand we were dealt and we had to come up with our plan of action and implement it. The only options we were given were medication and therapy. We were willing to use therapy, but unwilling to use medication. Medication was too long term, and it wasn’t something we were willing to commit to for Andra. We didn’t want her to depend on them to feel “normal”. She already had issues that caused her to rely on things to keep her feeling calm and safe. That showed us her reliance on those things could be debilitating. She would not sleep unless she had her favorite purple blanket. She couldn’t function if she didn’t have her pacifier, or her rigid routines.
We didn’t want to have her rely on something else in order to cope. We wanted her to learn skills that helped her adapt to every obstacle that she faced, and she would face many in her life, but we knew that she could overcome them. I didn’t know how we would achieve it, but was not going to be defined by her diagnoses. The only way we would achieve that goal was to keep a focused attitude. There was no room for doubt, and pitying our plight, we needed to move on from it. Don’t get me wrong there were still times when we wanted to throw my hands up in frustration, but we had to right our attitudes and get back on track. So we came up with a plan of attack, and we would handle each issue as it came up. Trying to tackle everything at once would be overwhelming, but as we worked on little areas we did notice the changes. It wasn’t overnight, but the changes were significant.
As we progressed from 3 to 4 years of age, we noticed that Andra developed hard nodules on her hands and she began to complain about them. They became unsightly, but also created problems with mobility in her fingers. We went to her pediatrician and were sent to a dermatologist that stated she had a bacterial infection. His treatment was to put her on antibiotics to lesson their size and hopefully gain mobility back in her hands. After several months of treatment, nothing had changed. We sought medical help from a specialist at our local children’s hospital. We were slammed with a new diagnosis, Juvenile Rheumatoid Arthritis. Could we not catch at break—I thought. It seemed like whatever bad thing that could happen, happened to Andra. In an instant my resolve to keep our focus evaporated and I sulked at her latest affliction. I wanted to go back to the place where I blamed myself, for all the negative thoughts I had when I found out I was pregnant so soon after our first child. I had to be honest with myself. At one point, I absolutely did not want to be pregnant. But she came and I knew that I did very much want her there. I felt it was my penance for misguided thoughts I had when I indulged in self-pity.
I can’t say that I got over this latest setback overnight. It took at while, because it wasn’t a diagnosis we were expecting. This was something physical, and there was so much more to it. She had so much to deal with, but the bottom line was that it meant I had more to deal with in a child that was not easy to handle. Was I angry? Yes. Was I questioning if this was God’s way of punishing me for not wanting to be pregnant with Andra? Yes. Was I feeling sorry for myself? Yes. Did I have a right to feel this way? Absolutely, but it also meant I had to recognize these things and move forward, especially if we wanted to find some sort of resolution to our difficulties. What did this mean for her and us? It meant we had something more to deal with. It meant that the road wouldn’t be easy. We listened as the doctor told us that she had a possibility of going suddenly blind from this disease, end up crippled, impaired for life or she could be one of the twenty percent of children that come out of this in remission. She had to remain symptom free for five years and after that then she would be in her first year in remission. Deep inside I convinced myself she would wake up one day and she would be cured and nothing would be wrong with her.
It didn’t work out the way I envisioned. It became a struggle for her for a while. Her immune system was compromised, so there were other things that we hadn’t considered that went along with an autoimmune disease. She was sick all the time catching whatever virus or infection she other kids around her had. She was finally talking and she let us know her pain was very real. She woke up every morning with tight swollen hands. JRA made her other issues more pronounced. For a while, I took great measures to insulate her because I felt some sort of responsibility for her situation. I tried to ensure that we minimized the stimuli that would send her into a panic. I tried not to expose her to viruses or germs promising to compromise her immune system. I worked over time to ensure nothing caused her to become upset or overwrought. I needed to ensure no more bad things happened to her. She and I had our fill. Each day became a struggle to move forward.
We attempted to get back into a routine. It helped Andra adapt better and it gave me little to think because I just kept moving without much time to dwell on the what ifs. We existed between doctor visits and dealing with her issues. Time seemed to crawl. Her struggles became more evident. It was more than a preschoolers normal temper tantrums, frustration because she struggled to comprehend, or break free from the issues that plagued her. She had some very real difficulties that she didn’t understand or know how to handle. Rain drove her to the point of hysterics. We couldn’t be outside while it rained, even if it was in a car. We rushed home so she would feel safe and the panic would subside. She couldn’t have certain textures touch her, because it overloaded her senses and caused disproportionate reactions. There were certain foods that we avoided because the feel of them in her mouth sent her over the edge. She longed to play with other children, but couldn’t quite accomplish the interactive play needed to forge relationships. She hid her hands because they didn’t look like the other children’s hands. I ached for her and all that she was going through.
As kindergarten rolled around, I was uneasy to let her go. Not because I wanted to hold on to her childhood, but because I was deathly afraid something would happen and they would not be able to handle her or her outbursts when she became over stimulated or panicked. I needed to know she would be okay without one of us there to help her through when she had difficulties. It was hard to realize there would be anyone who could better understand her and the issues that plagued her other than me. Forced into relinquishing some control, I had to trust she would be okay without me.
It took me a little while before I felt comfortable leaving her in the hands of her teacher, but eventually I relaxed. I knew we couldn’t insulate her throughout her life. She needed to learn how to handle situations on her own. The only way to accomplish self-reliance was to let her experience them on her own, and eventually she would learn through trial and error what she needed to do to cope. It may take longer than the average child, but we were there to guide her. It was time to start letting her do some of the things for herself because if we continued to buffer and make things easier for her she would never be able to do it on her own. Soon she fell into a routine that was comfortable for her, and she adapted to kindergarten. There was a calm to her routine, lulling us into believing that all was well with her. I was even hopeful that maybe the doctors were wrong and the issues that plagued her during her younger years were no longer an issue.
It wasn’t until I stopped in to be a parent helper that I realized the issues that we naively thought had been cured, were still prevalent. My observation confirmed the fact she was still dealing with them, and it also explained why she was so physically exhausted when she came home after school. Andra was trying to handle things that normally sent her into overload. My guess was that she was trying hard to be like the other children and it was taking all she had to accomplish it. As I spent the day at school, I noticed her avoiding some of the tables with things she didn’t want to touch. She played along side the other children, and very little time was spent interacting with them. My heart broke as I watched her. Other children congregated together, and she sat quietly by herself. I knew the only thing from sending her over the edge and into meltdown was the structure of the routine. Nothing ever changed from day to day. The class did things at the same time every day in the same way. It was her saving grace.
We realized if we adapted the same structure for her in other areas it minimized the outbursts, but was that a way to live? Outside of school, and on days school wasn’t in session, her symptoms were more pronounced. We tried to cope, but at times it was difficult. The one issue starting to overtake her was the fear of rain. If it rained she would start to panic to the point of having a full-blown meltdown. There was no aspect of rain she liked. It got to the point where we couldn’t even be inside of a car when the drops of rain began to fall before she began to panic. If she saw raindrops hit the windows of the car, she would start to distress and we would be racing home to stem the attack. It was never a relaxing time when it was overcast. We were always aware that we would have to leave at any moment. There was never any enjoyment knowing we were on alert all the time. Finally, we decided we had enough.
My husband and I decided to go back to what worked with us in the past…EXPOSURE THERAPY. It had been the one constant that always worked, even when other interventions didn’t. We learned early on she was and all or nothing child, there was no in between. So, we couldn’t waver when it came to dealing with her issues. It had to be full commitment on our part. We waited for a day that was rainy without thunder and lightning, not hard to do in a state like ours where the weather changes in a short period of time. There was no advance warning, my husband gently took her hand while she stood and watched the rain at her post by the back door, and led her out into the garage. He slipped off her shoes, opened up the umbrella, and hit the button to open up the garage door. Andra’s eyes were wide as saucers. He pulled her forward as she dug in her heels. She had an idea of what was going to happen next and she would have no part of it. Unfortunately for her, he was more determined to overcome this latest cause of anxiety. Slowly he was able to get her out of the garage and into the rain. At first she was stiff with panic, stuck to my husband’s leg underneath the umbrella. In an instant, he decided to throw caution to the wind and close the umbrella. She repeatedly mumbled…No, no, no, no, no.
He cajoled her, and after many minutes they were joined hand in hand jumping in puddles and enjoying the summer rain. A few minutes later, it was as though God himself smiled down on us because the sun came out and a fresh rainbow appeared. She was happy…finally. A break through alluded us for so long, I was convinced she would never overcome her fear of rain, and I began to picture her old and gray huddled in a dark closet to get away from the rain. Just by going back to the one thing that had helped us in the past, it gave us the result we wanted. Exposure therapy was and has continually been the single most helpful form of therapy for our daughter who has battled the issues of Autism Spectrum Disorder, OCD, Anxiety, Panic Attacks, Hypersensitivity, and other symptoms since she was a baby. Our story continues daily with our daughter, but the one thing we learned from our experience is that she is better today because we were resolved to give her the tools she needed to cope with life.
Stay tuned there is more of Andra’s story to come….

