Friday, May 30, 2014

Changing my perspective

I have thought about this blog post for a day or so and tried to decide how I should write it, or even if I should. But, I came to the conclusion that I can’t possibly be the only person dealing with this and if some other mom is sitting at home feeling like a horrible person, then maybe my honesty will at least make her feel a little less horrible.

When Elizabeth was born, my husband and I were excited to raise another beautiful girl. We were excited to watch her grow up and learn. When she didn't roll over by herself until she was 8 months old, I thought she was just taking her time. She started walking by the time she was 12 months old and in every way seemed to be developing normally.

At 18 months we started noticing that she was acting odd. She would stop playing mid action and freeze. Her face would go completely blank, she’d twitch a bit and then she’d snap back into reality and just start playing again. The first time it happened, I figured she just spaced out. But the episodes started to happen more frequently, sometimes up to 10 or 12 times per day and they got more severe. She fell over once and other times I was worried she’d hit her head on the table during dinner.

She was finally diagnosed with myoclonic epilepsy, basically she was having absence seizures. After several months of testing medications and dosages, we finally found one that worked well with few side effects. Some of the most difficult times were the frequent blood draws. It was a nightmare every time we had to get her little arms and hands poked to make sure her liver was handling the medication.

It’s been two years in November since her last seizure. Once we reach that milestone she could be weaned off of her medication. We are excited and hopeful, but the medication and the seizures have taken their toll. She’s behind in speech and learning. I was told this was a possibility from the get go but I’m not sure I really comprehended the idea.

Her sister, Emmy, is very bright. She’s excelled in reading and enjoys socializing. In every way she’s a normal 7-year-old who happens to be very good in English class. Liz is very quiet. At five she still has trouble with her colors and numbers. She can say the alphabet and count to 15. But she can only name a few letters and she can’t write any. She is the most loving little girl, but she struggles in some areas.

We were excited when she first started preschool. We hoped being in the learning environment with other kids would be helpful. During the first few weeks we were approached by a Special Ed teacher who asked us to consider having her tested for learning delays. This wasn't a huge surprise, but my stomach clenched a little. Liz’s IEP (Individualized Education Program specialist) has been a godsend. She’s wonderful and Liz loves her. Over the last several months her personality has blossomed and she is making more friends. She’s still quiet but she can speak in full sentences and her focus is better. The extra help is working.

We have been preparing to transition her to kindergarten next year. Planning on taking her and Emmy to school together every day. Debating whether full-time or part-time would be better and worrying about how she would handle a new classroom.

I was approached by her IEP specialist the other day with the suggestion that I consider enrolling Liz in a slower-paced kindergarten class. If she attends she will be bused to a different school and attend class with 7 other kids (instead of 29 other kids!). The pace will be slower and the teachers will have more 1 on 1 interaction with the teacher. Her IEP specialist is concerned that Liz will get lost in a traditional classroom.

I attended the open house today to learn more about it and I wanted to cry. I feel like every time I talk to a new teacher I have to emphasize that my child isn't stupid. Whenever I talk about Liz needing help in school I feel like my friends and family should know that’s she’s not getting extra help because she’s dumb. Because secretly I feel like I did something wrong. Maybe I’m not teaching her enough or working hard enough to help her get better so she needs teachers to make up for what I lack.

It’s this constant guilt. Maybe if I stopped working on my writing projects, maybe if I spent hours reading to her and creating perfect crafts and learning tools. Maybe. Maybe. Maybe. Or maybe, she’s just a little girl who is having a hard time in school. Maybe she’s just a little personality who needs extra help.

I've watched mom’s with children who have far more serious disabilities and delays and I wonder how they do it. In perspective, Lizzy is doing well. Things could be far more difficult and I know there are moms who are dealing with a lot more. But, still I somehow feel like a failure. Like I’m failing as a parent because Liz isn't “just like everyone else.”

I honestly don’t know what I’m doing. I’m pretty sure I mess up a lot. I know I could do better. But, I am trying. Maybe part of this journey is learning to accept that there are things I can’t control. There are things that I can’t make easier for my little ones, no matter how much I want to. Maybe.

1 comment:

  1. Ang,
    Everything you posted, I have been through.. I feel everything you are writing. I have felt it all before and will again. It's a journey. There is no solution, there is no conclusion. This is a fluid situation. It changes day to day, maybe hour to hour. It won't ever be "easy," but it will become 2nd nature to all of you. This is all coming into sharper focus because of the huge transition Liz will go through this coming school year. You will revisit these feelings and situations again and again and again. Each new school year, for every new teacher, you will have to try to define, by typical standards, how and why your daughter is actually gifted, blessed and vibrant and that she deserves to have those gifts appreciated not measured by common core standards that can't possibly understand what we understand about our children, that they are gifts from a Father who trusted them to come here and handle what He gave them. That Heavenly Father loved them so much and trusted you and I so much that He sent them to us to love, guide and teach. But, He also expects us to be their fiercest advocate and their most aggressive protectors. We are our daughter's Davids to the world's Goliaths.