School Worries

School Worries

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 entire blog post last 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.


Written on 2011/08/10 by:


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
Latest Ebook
Back To School

Transitioning a Child with Special Needs Back to School

The phrase “back to school” inspires both joy and trepidation. When a student has special needs, those emotions are magnified and the checklists are multiplied. There’s nothing simple about t...
  • Jenni

    This list of things to worry about is endless.  My 12-year-old is moving to middle school.  Her elementary school friends are welcoming and supportive, but what about the new kids?  Will they be mean to her?  Will the exclude her?  Will they take advantage of her naivete?  We had such great support from the teachers and staff in the elementary school.  The middle school staff seem very set in their ways and hesitant about trying new things.  She can’t afford to lose a year.  How much will I have to fight and scream to get what she needs?  Will she get lost changing classes?  Will she ever be able to open a combination lock?  It goes on and on.
    I try to keep my anxiety confined to insomnia sessions, but my worst fear is communicating my fear to her without meaning to!

  • susan

    Just enjoy today.  No school, teacher or program is perfect.  It will slip by so fast and the next thing you know she will be graduating from high school.  You will look back and see how easy the school years really were.  I speak from experience as a mother of 6, 3 with Down syndrome, one with DS out of school, one a senior(DS) and one just entering high school.(DS)

  • Valerie Strohl

    Jenni – thanks for saying what we are all feeling. I always believe that it brings relief in knowing we are not the only one. I’m sure your child will do great because he/she has a terrific mother! Middle school is daunting, but I found it to be a year of maturing for my daughter. They just become so darn independent! I wish you all the best!

  • Valerie Strohl

    Susan, I know you are right – especially when you  say that you will look back and see that the school years are the best. I watched my daughter goofing around with friends yesterday as we decorated her locker and thought that very thing. What will we do when she no longer has a place to be with friends?  As you advised – just enjoy today.

  • Sherry C

    What a wonderful post I can relate to it in so many ways and my daughter is only entering grade one.  I worried like crazy before preschool silly me, then Jk not so much SK but now grade one and yes like your daughter school has been so good to her in every way.  I need to stop and rest assured she is in good hands surrounded by people that care about her and what to help her along. I advocated for her to be included with typical kids against our local school boards norm. I truly feel it’s the best decision for her but I worry and question myself about.   I too am feeling hopeful for another good year.

  • Valerie Strohl

    Sherry, I’m so happy to know I’m not the only one. I also worry that I’m making bad decisions when I go against the norm.  So far, I have found that doing what is best for my daughter, not what others try to push me to do, is a good move. It’s scary, but no one knows your child like you do.  Best of luck this year.