This time of year, every year, my heart begins to race a little - and here's why.
It's the few weeks leading up to school for my now 12-yr old daughter with Down syndrome. She will be a 6th grader this year and beginning her second year at our local middle school. Last year, when she moved from our cozy little elementary school, where she was known by everyone, to a school which was four times its size, I was sure I would lose my mind.
Last summer and the days leading up to her first day of 5th grade, I would awake in the middle of the night, startled, with a wave of fear flooding over me. Actually, the images I was conjured up in my sleep deprived mind were quite impressive. It's so easy for me to do, to think of worst case scenarios.
But, the joke was on me, as she had a great year. She made friends, matured exponentially, made academic progress and her teachers loved her. In fact, according to my middle daughter, she was quite popular last year. What's more, I survived the whole ordeal - with only a few emotional bruises. In the end, what a colossal waste of time and energy to worry all summer.
Now, here I am again, two weeks out from day one of school and I can start to feel the worry kicking in full gear. Will she get the right teacher? Will she get the friends, who GET HER? Once I have given these concerns ample time to raise my blood pressure, I move on to questioning whether or not I should have been a better negotiator at her case conference last year. Keep in mind, I wrote an entireblog postlast spring about how I believe that most schools would care for our kiddos regardless of whether or not they had an IEP. My words must be more confident than my thoughts.
I can't believe I'm saying this, but as summer comes to an end, I have begun to question every single thing I believe in about disabilities and services at school. And while it infuriates me, I also understand why I do it.
First, it's because I have heard some really crazy and heartbreaking stories out there and the thought of one of these problems impacting my daughter's education overwhelms me on so many levels. I mean, let's face it, this stuff happens to someone. What keeps it from happening to my daughter?
Second, you can say all you want about IEP's and special education law, but in the end, there's still quite a bit that we have no control over when we send our kids to school. I don't control the teacher selection, the kids who will be in her class, the overall curriculum or most of all the fact that her older sister will no longer be at her school or on the bus. I hate this uncertainty and lack of control more than anything. Thus - the ever increasing sleepless nights.
So every day, as I sit at the kitchen table with my morning coffee, I expel a rather large quantity of air from my lungs and say to myself, "I wish summer would never end."
But as the day goes on, my mind strengthens in its resolve to say "no". Sure, there are risks, but they are far outweighed by the good that comes barreling through every school year. The new friendships, new opportunities and my daughter's ability to continue to rise up to the challenge. And for that matter - there is the progress I always seem to make in doing this all just a little bit better. My daughter will always amaze me, but sometimes I even amaze myself.
The fact is, life has been good to my daughter, even with the occasional bumps along the way. My goal? To try to stay focused on the good and throw the bad to the side of the road and move forward. The last thing I want to do is give in to fear or worry and to keep reminding myself, that in the end, she will be ok. And I will too.
Let's hope for a good year.
Valerie represented tens of thousands of families of children with disabilities in Indiana as the Chairperson of the Interagency Coordinating Council for Infants and Toddler under three Indiana Governors from 2001-2006 . This experience, along with raising a young daughter with Down syndrome, has provided her with a unique view and understanding of the issues facing the disability community. You can read her blog at UnitedMediaNow.com