bittersweet

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.

winter concert, 2014

winter concert, 2014

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…

 

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2 thoughts on “bittersweet

  1. Sean MacNair (@seanlmacnair) December 16, 2014 at 7:18 pm Reply

    “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 have been to the emergency room 17 times this year. (Well, 18 times, but once was for me.) My son bashed his head on the concrete. My son busted his head (and the drywall) open more times than I care to think about. My son took a whole bottle of Abilify because he doesn’t understand what is medicine and what is candy. It’s all candy to him, until he gags on the nastiness of the pill and then I can’t get him to take it to save his life.

    I love my son and daughter. I love them more than I love my own life. Yet every time I took him to the emergency room I was doing so to change something about him. I don’t want him to hurt himself, not because it somehow inconveniences me, but because I can’t stand to see my son purposefully hurting himself. And hurting us. He hits his mother, he hits his sister, he hits me. I have been kicked over and over. I have been punched in the head while driving. It isn’t fun.

    Should I not try to solve the conundrum of him self-injuring because I feel as though to do so would be to not be accepting of him, to say that he isn’t good enough? Should I not wish that autism would go **** itself due to all of the heartache it has caused my son and daughter, not to mention my wife and myself? Is it awful to want him to have never been born with autism, to want him “to be something (he’s) not?” Absolutely not! It is because I love him so damn much that it breaks my heart when this behavior manifests itself. It is because I love him so damn much that I get in the face of doctor after doctor after doctor and say “Hey! There is something wrong here! Do your job! Fix this!”

    Yes, I want my son and daughter to be “something they’re not”, because the something they are is not healthy for them. The something they are will lead to them never being able to live life fully, as they will always need care, always need to be protected from themselves.

    I closed a blog entry of my own a few months ago with these words:
    ” I am not an awful parent. I don’t do many things well, but I believe I am a damned good parent. When parent-teacher conferences come up, I am there. When my children are sick, I am there. When my son took an accidental overdose of medication, I stayed up all night long with him, slept for an hour, and then went back and stayed with him some more.

    When the road gets hard, and it gets hard a lot, I don’t bail. I am committed to my children. I AM THERE….

    I don’t accept my children because I hate the condition that has robbed them of so much? On the contrary. I love and accept my children more than anyone could possibly know.”

    • lisaleben December 16, 2014 at 7:33 pm Reply

      I don’t have to deal with violent aggression, and my daughter is verbal and social (even though not always appropriate) so shouldn’t that be enough? Shouldn’t I count my blessings and be happy with her the way she is? Most of the time – yes. But sometimes – no. I know of many many people out there are in the “my kid is fine just the way they are” camp – but those of us who experience the fleeting (and sometimes constant) desire for “better” for our kids need to hear that it’s ok. I know it’s ok, even though I feel guilt and sadness about it sometimes. Like I said, it doesn’t make me a bad mother, it just means I’m human. And by the way Sean, you’re a GREAT dad and an amazing advocate for your kids!

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