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.
