Last week, my almost twelve year old autistic daughter sang in the winter concert at the school she attends. My daughter straddles two worlds. In one world, she is in a self-contained special education classroom. In the other world, that special ed. classroom is in a “typical” school and, at certain times with an aide, she is able to join with the other children at the school in areas where she has exhibited some proficiency – what’s known as “inclusion.” Some children spend most of their day in inclusion, but not my daughter. Music class is one of the few times during the week where is with her typical peers. She LOVES to sing, and loves going to music class.
She used to be terrified to stand in front of people. I would say from preschool until the third grade she progressed from having to be taken off the stage crying LOUDLY, to standing still and silent with a look of fear on her face, bottom lip quivering, while the other kids sang. Then somewhere in the fourth grade she started to be more comfortable on stage. She’s in sixth grade now and she “eats it up!” The first few concerts when she actually sang instead of just standing frozen, I cried. Cried tears of joy for the remarkable transformation from frightened child to confident performer. She still doesn’t like to be singled out, even for praise, but if she’s part of a group, she really enjoys herself.
She practiced SO hard for this concert. It was truly the hardest one to date. She had to memorize SIX songs, ONE OF THEM IN HEBREW. The choral director gave the kids links to videos of each song so they could sing along for practice at home, and my girl had me click on those videos EVERY DAY. The night of the performance I brought her into the school and into the hands of a staff member, who would accompany her through the night backstage until the concert was over.
Here’s the bittersweet part for me – and with autism there is ALWAYS bittersweet. While she’s onstage you cannot tell her apart from the “typical” children that are surrounding her. You would have to know her and watch extremely carefully to notice any differences between her and the other kids. To the naked eye she is just one of the kids in the chorus.
This makes me so proud, and yet, so sad. Proud because of all the hard work she’s done through the years, both in cognitive and behavioral learning, that have brought her to this moment, but also proud (even if only a tiny bit) that for a little while she can “pass as normal.” OUCH. It hurts to admit that, even a little. How can I say I love my daughter and yet have a tiny part of me want her to be something she’s not? Isn’t this the same as saying that somehow she’s not good enough? How awful is that? I guess I could also say that I wish my son could be more athletic, my oldest child more conventional, and my husband a little more gentle. I think we all wish there were things we could change about those we love, no matter how small, to make them even “more” perfect. So perhaps I’m not the worst mother in the world after all. Just human.
This is where the sadness comes in. It’s from the guilt I feel in admitting that teeny bit of “bad” pride, the pride that wants to hide who my daughter is and make her into something she’s not – – – but also from knowing that the “passing as normal” doesn’t last and what that means. She’s fine onstage, but once she’s offstage she has a very hard time relating to her typical peers. Her social interactions are SO awkward, her eye contact fair at best, and her speech, both in its content and grammar, are a pretty quick giveaway that she is different. In the whole chorus, her only friends are the two other children from her special education class. Passing onstage hasn’t widened her social circle of acquaintances or given her any new friends. Her world is still small, which is truly unfortunate, because she enjoys being with people.
It’s a dizzying whiplash – to feel so proud and yet so sad at the same time. To cheer for all your child has accomplished and yet to grieve over the child they might have been if not for…