Search This Blog

Friday, March 14, 2014

Analyzing My Sadness

As I wrote about recently, we have pretty much come to the decision that Janey needs to change schools to attend a specialized autism program.  It's a hugely tough decision, for us and for her current school, and everyone is working on making sure we are doing the right thing and doing it in the right way.  Everyone is working to do the best for Janey, and yet, still, I am very sad.

I am sad because I love her school.  I love the people there.  It's become a home away from home for me, for the past 14 years.  When I drop off Janey, I talk a little with people I've known for many years.  I care about them, and truly love some of them.  It's a wonderful school.  But---I know that isn't what is the most important.  The most important thing is that Janey be in a place that can best help her be happy and live up to her potential.

This morning, the sadness hit me very hard.  It was "Dress Up in Green" day at her school.  Although they can't come out and say it, it's for Saint Patrick's  Day.  There are many, many Irish families at Janey's school---probably close to half the families, so it's a big day there.  I dressed Janey up for it, and thought about how much I enjoy things like that---special dress-up days, field days, the excitement of a school just before Christmas, the days that are a little out of the ordinary.  And then I thought about how in an autism school, those days will probably not happen.  Kids with autism often don't like changes of routine.  They like predictable days, not special days.  And I thought about how Janey didn't care a bit about dressing in green.  She doesn't know what St. Patrick's Day is.  My sadness was just for myself.

However, when we got to the school, there was a special surprise.  A bagpipe player was playing for the kids as they entered the school.  Janey walked straight over to him and started lightly touching the bagpipe.  The sweet player showed her parts of it, and talked to her so kindly.  Then he played another song, and the smile on her face was one of her incredible, overwhelmingly wonderful smiles.  She held my hand and started to dance.  As we walked down to her room, she was as happy as I've ever seen her.  And I thought---it is not totally just me that I am sad for.  I'm sad that she won't experience the everyday surprises that a "regular" classroom holds.  She won't be around other children that are living a more typical childhood.  She will be with people that care for her, I know, but there is something given up, too, something hard to define but something important.

This sadness---it doesn't mean we are making the wrong decision, I don't think.  But it's very real.  I have often thought how one of the biggest joys of being a parent is reliving the parts of your own childhood that were special.  When we think back on childhood's special moments, we don't normally think "It was so special that my days were predictable.  I have such special memories of regular school days"  We think about the time we got a huge bag of candy for Halloween, the classroom parties, the field days and the shows and the bus rides to meets and the snow days and the graduations.  At least I do.  I want Janey's life to have those moments.  I want her to be surprised by bagpipers.  That is what is making me sad.


Freeyoke said...

Perhaps there's a positive side to a school switch you've not anticipated yet? My daughter doesn't fully appreciate holidays or care beyond the possibility of getting candy. I'm a big cheapskate in buying 50% off post-holiday candy. My kid doesn't freakout with new experiences and has no clear routine but she's impulsive. Teachers tell me she doesn't always behave like other kids even her special ed class. She rifles through the teacher's desk and refuses to move if she not done playing with something. The staff even used my own wording when they said she can be "manipulative" in trying to get her way.

pianorox said...

I read your blog and although I am not an autism mom I believe you are a great mother and Janey is lucky to have your love. I teach piano and teach several autistic kids, one is a lot like your Janey in many ways. He loves music, has a perfect sense of pitch, and is always enthralled when the music matches the songs in his head. Does Janey make sounds with instruments? Sometimes music, and the creation of music, is a way to reach people that seem unreachable, autistic or not. I apologize if I am saying things you have considered and I don't know your life other than this wonderful journal of your journey, but I wanted to reach out in the only way I can.

Suzanne said...

Thank you so much for reading the blog and your ideas! My mother used to teach piano, and I love the idea of Janey having piano lessons. It's interesting---she has never shown as much interest in keyboard instruments as in others. I don't have a piano (I wish I did!) but we always have a keyboard out for her to try if she wants to, and she usually ignores it. She does love drums! What I'd love to do is somehow get her modified voice lessons. Singing is her preferred way to product music, it seems like! I don't know if she's be able to be directly instructed, but I think she could be exposed to singing and given examples that would let her use her natural musical talent to communicate and just enjoy herself. Thanks so much for reading!

pianorox said...

Thank giu for answering. The way I reached my student was to play songs he loved on the piano (keyboard is fine too) and he recognized the tune and that motivated him to try and duplicate the sound. As far as a formal lesson it is more of following the lead and playing to strengths. I am sorry to say my student does not have a natural singing ability but he can recognize melodies like a pro, and now can play songs from Mass that he loves on the piano. Maybe if there were someone who could listen to Janeys singing and then play back the tune on an instrument it would make a connection in her brain. I would love to try but alas I live in Texas. Again I apologize for the unsolicited advice but Janey sounds like a joy and I love giving kids a way to express themselves through music.

Two Brothers One Journey said...

I 100% feel your pain. I deal with this kind of sadness on a regular basis with my son who has autism. Janey is very lucky to have you as her mother!
I found your blog a few months ago when I was up in the night with my son, who does not sleep. I have found comfort in your blog. I blog about my family's journey at