I have so much to say. . . I never can decide what to say first! Shall I start with the story of the long road to her diagnoses? Why not! I’ve already momentarily forgot what else I was thinking of writing today. This happens a lot to me! Lack of sleep and too much stress combined with fibromyalgia has greatly affected my memory and ability to function. So, here’s the first part of how our life began with autism.
When my girl was a couple months old I was visiting my therapist who I had weekly appointments with. I was suffering from severe depression from life. Having a baby and being abandoned by her father in the first trimester had devastated me and compounded the already there lifelong depression. Needless to say I needed therapy weekly and had for quite a while. While at that appointment, my girl was doing her regular “dancing hand movements” in front of her eyes thing that she regularly did. She was around 3 months or less then and I asked my therapist if I should be concerned. I didn’t know much about autism then or babies for that matter. He said no, that all babies do that. Really?! Well, 4 kids later, she’s the only one that did. I knew then. A mother’s instinct is often right.
At a year old, her pediatrician recommended she be tested for developmental delay by the state. It was free. Free does not always equal better. They came to our home and tested her. She did everything they asked. The tests reveiled that although she was developing behind other children she was still within range. In the end, they determined her delays were “lack of exposure” because I kept her at home instead of putting her in day care. Well, imagine what that did to my ever growing depression. She went from not talking for almost two years to full sentences in zero point 2 seconds. It would be 3 more years before anyone looked at her again with suspicion about her development.
We moved two more times by the time she was 4 1/2 and I had had another child by then. During that pregnancy, I spent a lot of it in bed neglecting her. Again I am blamed for her lack of development, but in the potty training arena this time. Just before we moved, after she turned 4, a close friend who had a daughter with autism, suggested that my girl might have a form of autism. Boy was I mad! I told her just because her daughter did didn’t mean all kids did, especially mine! I had no clue and I was ignorant in the subject to boot.
We settled into our new home and sent her to preschool. They took her even though she wasn’t even close to being potty trained. She actually made it through most mornings accident free. As the year progressed, it became evident that something was going on but what?! We pressed the school district to come in and test her. They did and determined her delays were not severe enough to address with an IEP. Then came Kindergarten. I ended up keeping her home to home school because she was regularly going in her pants at that point. We were also dealing with constipation from birth and treating it with laxatives which wasn’t helping her predicament. We would spend years being told it was her constipation that was keeping her from becoming potty trained.
During that year of home schooling, I as a teacher and mother realized that something was definitely wrong. My sister-in-law speech pathologist tested her for auditory processing disorder. She came up clean except for phonics. I worked hard on that subject all year. We would practice and drill all the while she would flip on the arm of the couch and rub her naked body on the wall. She was diagnosed by an OT with Sensory Integration Disorder that year. I began researching autism again and discovered the spectrum. I became fully self-educated in the subject and am now well versed in this area. After all this research I became convinced when she was 5 1/2 that she had some form of high-functioning autism. I did as the national autism site suggested and went straight to the pediatrician multiple times. I got shot down every time. Ironically, sometime around when her younger sister was 2 their dad kept seeing autism signs and was all freaked out and wanted the younger one to be evaluated. Funny in a not so funny way how things work out, isn’t it?
She began going to OT and behavioral therapy. Oh, the behavioral therapy and how that began. . . well, 1 day she just started self-injurious behaviors. It started between 4 1/2 and 5 1/2 years old. It was terrifying. I have to admit the first thing I thought was that someone had molested her. What other reason would a child hurt themselves intentionally for?! I had experience in this arena too because of my own childhood experiences and this is all I knew when it came to self-injury. Once I ruled this out and got refocused I began to pursue a spectrum diagnosis or at least an evaluation anyway.
The next move came. This time out west in a little town in Nebraska. It was a one horse town. I finally settled on a small christian school. I explained the situation to them and they were willing to take her un-potty trained. The teacher asked if there was any books I recommended she could read. Now a days, you can go to the library and find plenty to read about sensory processing disorder, still her only diagnosis; but not at that library. This one horse town with less than a 5,000 population was short on books and resources.
It would be an entire year before anyone would even consider helping us and an entire pregnancy later. Another pregnancy spent in bed. Another pregnancy where I get to neglect her and my other child because of complications. Well, mostly her because she kept to herself and started “gaming” on the computer a lot. Her little sister would bring activities to me and we would do them in bed everyday. However, my girl did not. Why was it no one could see what I could so plainly see? Let me enlighten you on that question briefly. No one, not my sister, not my brother or sister in law and not even my own husband believed she had a spectrum disorder. My mother was my only ally and even she often turned on me behind my back to my sister. Oh, the tears I could shed and sometimes do over that mountain of pain. FYI: What it took to convince them all is unbelievable! No one should have to go through what I went through and this will become my purpose someday. An advocate to other parents that know and know one believes.
To be continued. . .(Don’t you hate movies and shows that do that! This post is way to long already.)