The Beginning of Eliska's Tale

In Fall of 2009, I placed my daughter, Eliska, into the YMCA program in our town. I paid for her care in this setting. My hope with this was to get her used to child care before I began my internship for school in January 2010. Eliska was high maintenance when she was a baby, and it extended into these toddler years. She was just a few months short of three years old when I placed her into the YMCA. I attributed her tantrums to the terrible twos and threes, but it became clear when she started child care that something else was going on. 

Eliska reacts to stress and anxiety in ways that are not appropriate in the "normal" world. Her threshold for dealing with problems is lower than the average child's. When she has had a tough day, a few of which can include over stimulation, sensory overload, misunderstanding, lack of communication, and more failures than successes, her threshold becomes even lower. Sometimes, kids will purposely pick at her because they like her reactions.  I do not know why she is like this. None of the doctors she has seen have been able to adequately diagnose anything. And I'm not out looking for a diagnosis, but I wanted to be able to identify the specific problem, so we could address that instead of just addressing the symptoms. 

Her behaviors in the past have included screaming, swearing, spitting, ripping her hair out, scratching herself. I can't call them tantrums, because that isn't what they were. I would watch her in the midst of an episode and see her disappear. Have you seen an animal in terror, trying to escape? That was exactly how she used to get. I could SEE Eliska leave her eyes, and be replaced by an animal fear. She would wet herself sometimes. It was almost impossible to reach her during this time. Most everyone couldn't. She used to escape the classrooms, running so fast the school staff couldn't catch her, and had to talk her down from a distance to keep her safe because if they approached her she would run again. At age four and five, she went through a period of saying she hated herself and was going to kill herself, then climbing over the railing at school. She has thrown furniture and chairs in the classroom. She had to be held so she wouldn't hurt herself, run away, or destroy things. My precious girl was in so much turmoil that she couldn't learn. She is a smart girl, has always been, but the stress blocked her brain from learning anything. She has always known things that small children aren't generally aware of. She knows if a teacher or adult doesn't like her, and she is right. To some people, she is not likeable. To others, she is precious. 

Diagnosing her has been a struggle as well. Her regular doctor said ADHD. She wanted to test that theory by giving her medication. I said no. I wanted proof, and I wanted to exhaust all other methods before medication. I did not want Eliska's character and personality erased by medication. I requested a referral to the Children's Autism clinic. Her doctor told me that she couldn't, and to contact the insurance company. I did, and they said I had to get a referral through her doctor. For two years it was my understanding that I had no help in that area. But a phone call, out of the blue, from the insurance company RN, and I found out that her doctor had to put in a referral if I requested it. When I told her about Eliska's doctor's refusal to help, she called the doctor herself, and we got the referral. When she was three, I took her to a counselor, who said she had Oppositional Defiance Disorder. Then, before any further help, that counselor dropped off the radar. So I took her to another organization. That counselor decided that it was a parenting problem. She was interested in helping me fix my parenting problem, rather than going any further into Eliska's difficulties. While there, she was evaluated by a psychologist who determined that Eliska had the signs of an anxiety disorder. This is the closest diagnosis we have gotten. We left there, and began seeing a counselor in our town. She has been with him for almost two years. He has persevered, even though he has been peed on, spit on, cursed at,  and scratched. She saw an occupational therapist for a year, and a speech therapist for a few months before her anxiety prevented her from making any progress. Her counselor referred her to another psychologist who, at first, determined that she was not autistic, but then sent me a letter that stated she was. 

During this time, I removed Eliska from the YMCA and put her into a home day care run by a wonderful woman who was able to reach Eliska, and began appropriately focusing on her issues. Eliska was also attending preschool part time, but I had to go with her, and stay all day. The next year, she was in the same preschool, but I started working part time. The staff there were unable to help Eliska with her behaviors, so if I was unavailable to go with her, she would not be allowed to participate in the field trips. Later in the year, the team switched her from part time in the preschool to about an hour there, and the rest of the time in the developmentally disabled preschool. 

Before Kindergarten began, there was a meeting of the team to discuss where she would go to school. The school district psychologist did an evaluation on her to determine where she was academically. The results were inconclusive. The reason is that Eliska had so much anxiety over the testing session that the results were odd. The team wanted to place her in a special school 45 minutes away. She would have to ride the bus to get there. Riding the bus was one of Eliska's anxiety points. During her first preschool year, she had so much anxiety during the bus ride that she would act out. The special education bus driver was not responding to Eliska appropriately, which further increased her anxiety. The bus driver finally kicked her off the bus, which I found out later, she was not allowed to do. Understandably, I did not want Eliska being transported 45 minutes away, one way, on a bus. The school where they wanted to send her was a special school for Kindergarten through 12 grade kids with behavioral problems. I toured the place. They had these little closets with doors that the older kids would be put into in order to calm them down. I was told, "It will only take one time for Eliska." I said, "It will only take one time because she will have a heart attack and die." I understand why they felt she needed to go there, but my experience with the staff was that they didn't completely understand how Eliska's mind worked and how to get through to her. I knew that putting her in this place would be ineffective and traumatic, and could result in her death. I refused, and I'm so happy that I listened to that small voice inside. I am a mom who generally listens to herself, and if the inside of me shoots off alarms, I will not ignore them. Huge alarms were going off when they insisted on sending her to this school. So I said "What else?"

They had no other options. I said, "I want her to go to the school her sister goes to, in our town." I made an appointment to see the classrooms. They took me to the developmentally disabled classrooms, and didn't feel the need to show me the regular classroom setting. So I wrote a letter, specifically requesting a full-time para-educator in a regular classroom. I stated why I felt this was the best option. Thankfully, the school district responded by hiring a behavior specialist. This awesome woman came up to our town, met with me, and listened when I told her about Eliska. I told her what I wanted and why, AND SHE AGREED WITH ME! She evaluated Eliska and the results where a lot better because she had a better understanding of Eliska than the school psychologist. So, at the beginning of Kindergarten, Eliska was in a regular classroom part-time, with a para. 

There were some struggles with the beginning of that year. Her para took another job, full-time, and no one knew until the day she left. They put substitutes in with Eliska until they could find her another para. As I knew would happen, Eliska did not react well to this, and one para ended up with a bite. Eliska was never a biter. This was something new for her, so I knew the stress was bad. After just a few days, they found her a para, who God must have sent. She did such a spectacular job, and she is a huge part of Eliska's progress today. Thankfully, things calmed down after her new para came in. The school provided a calm-down room for Eliska, which she used daily. She was suspended twice, which upset her so badly, she never behaved that way in school again. By the end of Kindergarten, she was in class full-time. 

The next year, the school placed her with a brand-new teacher. I was concerned, because I had doubts about a new teacher being able to handle her. I was WRONG. God sent this teacher as well. Another fantastic person placed into Eliska's life who was able to reach her in the best way possible. Eliska only had access to her para for about 10 minutes a day. She had a total of 30 minutes daily special ed help. The rest of the time, her teacher was a rock star. She never observed any extreme Eliska behavior that was so common the year before. Praise the Lord!  Hallelujah! 

This year, she is going into second grade. She won't have a para at all. Her first grade teacher communicated with the second grade teachers all last year, and I was told they both requested Eliska in their class. She has gone from a terror stricken animal to a smart girl who, most of the time, can conduct herself better than other children. She began first grade barely knowing how to read, and ended the year ahead of the normal reading level. She loves homework, loves school, loves her teachers, and aims to please. She is a hard worker, a perfectionist, a fantastic learner, and a great helper. She gets angry still, sometimes, but nowhere near what it used to be, and she has learned tools to help herself. I have known of Eliska's potential from day one, and after so much struggle on my part and hers, others are finally seeing it too. At one of her team meetings, the principal, who had started out being skeptical, told me that I had proved him wrong, and that I had done a great job. 

Reading back through all this, it sounds like I was super mom. Nothing could be further from the truth. I had doubts. I had fears and tears. I was frustrated, I got angry. I felt like we were beating our head against a brick wall. I felt ignored. I was sometimes treated as a hysterical mom, who lacked knowledge of the reality of the situation. I have a college degree! I have been raising her on my own from day one! I know my child, because I pay attention. I have raised another daughter without these issues. I knew it wasn't me. 

We still don't know what exactly causes the symptoms. She had an initial evaluation with Children's. It took eight months. They couldn't say for sure if she had autism or not. So she was referred to their psychologist, which will take another eight months. But Eliska is doing so much better! And without any form of medication! What a victory! I know God has been there before the beginning. He knit her together in my womb. He loves her more than I do. He knows exactly what she needs, and what she can go through to get stronger. He has the glory here. Thank you so much Lord. 

I want to encourage the parents out there who are struggling to find help for their child. Don't give up. Don't let doctors tell you no, and don't wait for someone else to do something. You have to act, and you have to show up every day in the classroom if you need to. The teachers and doctors know you are serious if you hound them. They will work harder to help your child if they know you are THERE, checking up on them. 

I love my girl! She is worth anything I had to go through and will go through on her behalf. She's crazy smart, inventive, brave, kind, helpful, encouraging, supportive, caring, and talented. She has the greatest sense of humor! She knows what she wants and she will go for it. She doesn't give up without a fight. If she knows you give a darn, she will work her hardest not to disappoint you. She doesn't conform. She amazes me every day. She is a blessing, and an asset to the people in her life. 

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