I sat there hopeful the outcome would be good, but as the seconds ticked by, I could tell this was going to be a difficult evening. My 11-yr old with Down syndrome was participating in her school’s choir concert and things felt a little off. For my readers who DO NOT have a child with a disability, can I just say for those of us who do… it is horrible when your child brings attention to themselves and their….disability.
I could tell, it was going to be one of those nights. I had dropped my daughter off in the choir room with her hair neatly combed into a bun in the back of her head, which was my first mistake. We all know she hates to have anything done with her hair. Her shirt was tucked in. She looked nice. When she came out to get in place on the risers, her hair was messy and in ponytail. Her shirt was untucked. Great, I thought to myself, people are going to think I don’t care what my daughter looks like.
As the concert began, my daughter looked everywhere but at the choir director. She looked at the kid singing behind her (yes, we looked at the back of her head for a while – nice ponytail sweetie). She then looked up at the lights blaring down on her on stage. Yes! Finally! A glance at the choir director, and a few versus sung. Beautiful – keep it up darling. No no – please no. Yep, time to tuck the shirt back in, take the ponytail completely out and then put it back in. Nice OT skills on the pony, love. But could you please quit licking your upper lip with your lower one - you look like Red Skelton. During the last song, she ended with both of her hands on her face, looking straight at the ceiling of the stage, presenting an image of “if I don’t get off this stage soon, I am going to lose my mind”. Honestly, I think I lost a few years off my life last Thursday. Everything I had worked so hard for my daughter went down the drain in front of a few hundred people.
Throughout the night, I kept praying that she would pull it together. She always performs, she’s a Down syndrome superstar – isn’t that what my geneticist told me? Not tonight. As my friends came up, I made excuses, looking for any compliment I could find. I was heartbroken. And the longer I was heartbroken, the more I became heartbroken that I WAS heartbroken. What was my problem anyway? My gosh, Val, don’t you write blogs daily about why people with disabilities need to be accepted for who they are? Included in everything, regardless? Big talker, terrible doer it appeared.
Honestly, the thoughts that ran through my mind were horrible. “I should have never made her do this – inclusion is too risky – pull back – hide – keep her out of the public eye so we never have to go through this again – it’s too hard. ” Notice all these thoughts had little to do with her and everything to do with me. I was a prideful mom with a disabled heart.
The next morning at breakfast, my daughter thanked me for coming to her concert. She was absolutely ok with everything. She had a good time, and thought the night a great success – I could sense it in the tone of her voice. What a schmuck you are, I thought to myself, but found the words to tell her how proud I was of her. She left for school and I took off for the health club to work off some unwanted emotions.
As I pushed through the physical & emotional pain, I began to wonder if I had limited my daughter’s opportunties because I was too afraid she would fail? Did I only put her in situations where I was pretty confident she would be successful? Was it her – or me – that I was trying to protect? I couldn’t escape my own feelings. I wish I wouldn’t do this, but if I am honest, I have no idea how NOT to. I don’t know how to allow my daughter to experience her life, without worrying how she will be perceived by others. Maybe that is why United Media is so important to me, and how I hope some day to convince the businesses and communities in which we live to do a better job of including people with disabilities. I am trying to CHANGE people’s perceptions, including my own it appears, so maybe we don’t have to worry quite so much when our kids mess up.
As parents, we are trying every day to make decisions that allow our kids to succeed, and sometimes, emotionally, we fail. It doesn’t make us losers, bad, or unsupportive – it just is. As it is often said, this is a journey, not a sprint. So Val, forgive yourself, and keep fighting the good fight. You’re OK.
Joanne
December 6, 2010 at 9:09 amAnd you are a fabulous mom to all three girls. Can I tell you about my last visit to the middle school with the fourth graders who are being introduced to the middle school? We watched a lovely concert by the fifth graders. As the choir sang one young lady did everything she possible could to annoy another student beside her and in front of her. She did not sing one note the entire presentation and I was mortified. Why? Because she was my former student. I thought I had taught her better. And I was sitting in the audience…she could see ME!!! I would take ten kids with Downs Syndrome before I would take her. Your daughter has a song in her heart…it’s pure. You just never know when it’s going to be visible:)
Valerie Strohl
December 6, 2010 at 9:44 amThanks Joanne. It’s always hard when it’s one of our own, isn’t it? Regardless of whether they have a disability or not.
Susan Banks
December 6, 2010 at 4:57 pmSo true! A song in her heart!
I think back two years ago watching my boy..pretending to sing..not wanting to be in the choir! Love my boy but brought attention to himself for the wrong reason.
Love love “song in her heart.”
Becky Beaubien
December 6, 2010 at 11:27 amBring tears to my eyes…your writing is so raw, so real. The reality that you point out is that there is no room for our kids to “mess up.” They are not allowed that…by who? By us, by society. To be normal is to mess up occasionally…that is where I find myself struggling with Kristen as well. I sat on pins and needles when she sang in front of the congregation with all the other kids last week. I wanted her to be perfect to show the world she is just like all the others. But perfect…is that really just like all the others? There was one other four year old hanging on the altar and not doing anything he was supposed to be. But, it is hard to remember that even typical children have their moments when we work so hard for inclusion. Thanks for sharing your feelings. I will be feeling the same as I watch her this week at her preschool Christmas program. She may be younger than your daughter, but the feelings are the same.
Valerie Strohl
December 6, 2010 at 1:42 pmIt is so hard. Glad to know I’m not the only one out there. You bring up a good point too – messing up for our kids has greater consequences. Instead of people thinking, hey – that kid is acting out and that’s not who they really are – we are faced with people thinking – that’s WHO they are. I’m sure Kristen will do great this week, and if she doesn’t, oh well! Just like our other kids.
Sue H
December 6, 2010 at 11:58 amVal,
We all go through this. We know how our beautiful angels are able to shine and show their halo’s and sometimes they just decide to be kids first and do what they want. They are still beautiful and still use their courage to get up in front of the audience and be themselves. I suffer from this myself and many times have to stop and think what is the point here. For instance when one of my students wrote their ISTEP paper on the “Big White Bowl” yes a toilet bowl – I was mortified the point being this student did pass with at least half credit on the writing so why was I mortified? I was mortified because a few people read it. The next year this same student (my same child) wrote on being left at home by Dad when Dad was supposed to have given the ride to soccer and this child’s first impulse was to call 911 then thought better of that and went to a neighbor to call Dad. Yes another mortifying experience wondering if CPS would show up on the doorstep, by the way this year on this ISTEP paper did much better than the prior year. Our children are blessings and sometimes we have to look at who our expectations are for – us, our children, our children’s peers or our peers. This is tough every day in the choices we make as parents, I am right there with you. All we can pray for and work for is growth from year to year and happiness for our children as well as rejoicing when our children shine like the angels they are. We walk miles and miles in our steps and have to sometimes wonder what would it be like to put ourselves in our childrens steps and all the “extra” expectations they have than their peers. Blessings you are a great Mom and we all need these reminders.
Valerie Strohl
December 6, 2010 at 1:39 pmThanks Susan. You bring up a good point about CPS – I remember when my daughter was first born, and someone told us to always be careful if we went to the hospital – especially for broken bones. Boy – we need to change a lot don’t we?
Connie Dillman
December 6, 2010 at 1:11 pmIt was 38 years ago I heard the phrase “dignity of risk” and I never fully understood the angst for parents when until I had my own children. Our world is better because you have given your daughter the choice. Thank you.
Valerie Strohl
December 6, 2010 at 1:31 pmThanks Connie.
Denise Hall
December 6, 2010 at 5:21 pmSweet Val…..please don’t be so hard on yourself. I suppose we as mom’s can be prideful but in all honesty, we just want them to be proud of themselves as well. As many hard knocks as they take, it is nice to have a good presentation, nice performance or outstanding piece of artwork. When they take pride in something they have succeeded in, the twinkle in their eyes is a spectacular sight to behold. It really all comes down to the love we have for our kids, disability or not. The wonderful part of it all is that in the end it is really about THE audience of ONE! God….
Valerie Strohl
December 7, 2010 at 9:42 amThanks Denise – and you are right! Some day, we will all know the truth won’t we?
Janine
December 6, 2010 at 10:30 pmVal, I could relate to your feelings expressed about your daughter’s performance at the concert last week. (By the way, I didn’t even notice all the things you mentioned about your daughter). I, too suffer from the “what will other people think” syndrome.” I do not have a child with a disability, but I do have a child that “marches to his own beat.” I know God has placed our son with us for many reasons, but most often to remind me to practice humility and unconditional love. You are a great mom, and we all need to be reminded to just be delighted in who are kids are and love them right where they are.
Valerie Strohl
December 7, 2010 at 9:41 amThanks for your words. I’m sure that people didn’t see what I saw – let’s face it, we are all pretty much watching our own kids. But you are so right, we need to be reminded to just be delighted in who are kids are and love them right where they are.
Karen Putz
January 4, 2011 at 9:42 amWhat a raw, honest post, Val! I think Janine made a good point– she didn’t even notice the things you did about your daughter. So sometime’s it’s a mom thing– we’re so in tune to our kids that we see things that others overlook– so we gotta cut OURSELVES a break there!
I think society sees too much of the superstars of disability instead of the real folks who walk the everyday journey.
Valerie Strohl
January 4, 2011 at 10:24 amThanks for your comment, Karen. True words spoken – we need to give ourselves a break – but it is so hard when the emotions get running high. I hope you will continue to read and give your thoughts!
Jawanda Mast
June 2, 2011 at 6:12 pmI just started a blog and wrote one similar to this a few weeks ago. I could feel what you were saying so clearly. Thanks for sharing your soul and journey!
sharing
http://sassysoutherngal.posterous.com/lessons-learned-from-childrens-choirs
Valerie Strohl
June 2, 2011 at 9:26 pmIt must be some common among us. Wish it would go away and we could just accept it all without a second thought.