Posts Tagged ‘autism’

My middle daughter is sick again. This has been happening a lot this school year. She’s had an illness or maybe a series of illnesses that the doctors have had a hard time diagnosing. It’s been going on for two months now, and she has had four different rounds of medication. On top of everything else, on one of the days she was well she managed to dislocate her kneecap in gym. All around, it’s been a horrible start of the school year for her.

Now, suddenly, the school is talking about educational neglect because of her many absences. I know she’s missed a lot of school, and although I have turned in several doctor’s notes, there have been some days when all my interactions with the doctor happened over the phone. These consultations, while helpful, did not count as visits and are not documented for the school. Also, my daughter has a history. She suffers from generalized anxiety. This leads her to want to spend as little time at school as possible. Of course it’s not the school’s fault—or rather it’s not this particular school’s fault. We brought her to this school after a traumatic sixth grade experience at another middle school in the district. This school worked hard to help turn things around. The staff provided so much more support than the other school did. They understood when she got sick or cried in class. By the end of last year, things had improved. This year was supposed to be so much better. Then she got sick—really sick, not anxious sick—and now I am facing the possibility of being reported for educational neglect.

I must confess I resent this. I resent the added pressure as I work with the doctor to figure out what is going on with my daughter. I resent the feeling that I have to send my children to school even though they aren’t feeling well and would probably be much happier at home. I resent having to come up with a doctor’s note every time someone has stomach flu or the creeping crud because my word as a parent just isn’t good enough. When did we start reporting to the schools instead of the other way around? I resent the drugs two of my children have to take just so they can function in school. I resent having to decide between sending my daughter to a high school that quite honestly scares me at times and giving up a four-year full tuition scholarship, along with the nagging feeling that whichever road I choose I will regret it. Oh, how I resent that last one.

I am beginning to understand why so many parents with special needs choose to home school their children. According to a report by the National Association of State Directors of Special Education (NASDSE), 40 percent of home-schooling parents reported that their child experienced some sort of learning or behavior difficulty while in school. I am cognizant that the schools can offer much to my bright, curious children that I can’t—art, theater, sports, valuable social interactions, and a pretty good education. Our school district even offers a four year scholarship to nearly any college in state to those who graduate after at least four years in the district. However, sometimes this feels like some sort of weird Darwinian experiment. You may have free college—if you manage to survive the school experience to claim it. My oldest daughter has managed it so far, but it’s been a rough ride even with an IEP to help us. This daughter doesn’t have that.

I ended up keeping her home today. She threw up her breakfast, and I just couldn’t send her to school after that. I called the doctor and set up yet another appointment for this evening. As for the threat about educational neglect—well, the schools will have to do what they have to do, and so will I. I am a mother. I am my children’s first and greatest advocate. And I have a lot of experience with saying, “No.”

(Müller, Eve. Home Schooling Students with Disabilities – A Policy Analysis. July 2004. http://www..nasdse.org)


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I thought I would add a follow up to last week’s post.

Last Monday, my daughter auditioned for her school improve team, followed by auditions for a couple of outdoor plays which are part of a local park festival. It was a long day, and she was exhausted by the time she finished the last audition. She made callbacks for her school improve team. The two festival plays didn’t have callbacks. (For those who are not familiar with theater language, callbacks are when the theater calls you back for another audition. I should have explained that last week. Sorry.)

Cast lists were coming out on Friday—the same day that we went out of town for a band trip. My daughter fretted all through the drive to Mackinaw City. She fretted as we toured Mackinac Island and ate dinner there. She asked a friend to check the lists on her phone, but the friend couldn’t find them.

Finally, we checked into the hotel. My daughter had my laptop unpacked before I had finished bringing in my suitcase. First she checked the improve team. She wasn’t on the list. She checked the musical at the park—not on that list either. Then she checked the children’s play.

“I’m the doctor! I’m the doctor!” she shrieked.

“Which doctor are you?” I asked with a smile. We are huge Doctor Who fans in my family.

“No, Mom, in the play,” she said. “It’s my first part in three years.”

She began dancing the hotel room shouting “I’m the doctor!” over and over again. I half expected the hotel management to knock on our door, but I didn’t stop her. I love my daughter’s capacity for unrestrained joy. That’s something we lose as we grow older and become more conscious of the people around us and worried about what they might think. However, she has never developed that level of self-consciousness, and part of me hopes she never does.

Eventually, she settled down and started exchanging texts with her little sister who was also in the play. (Her first part!) Then she started talking to her friend about the play and the part and all the best doctors on TV and in movies. The doctor wasn’t the biggest part in the script, but to listen to her you would have thought she had the lead. My high school drama teacher would have loved her for that alone. She used to say, “There are no small parts, only small actors.” From that measure, my daughter is the biggest actor there is.

Before going to bed, she came over and gave me a big hug.

“I’m going to be the sixteenth doctor,” she told me.

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When my daughter was in third grade she decided she wanted to be in the school talent show. I signed a permission slip, and together we chose a short humorous poem for her to read—Cartwheels from the book Hey World, Here I Am! by Jean Little.

On the day of the talent show, my daughter tripped lightly onto the stage and read her poem about not being able to do cartwheels. She demonstrated one of her failed cartwheels, shrugged and walked off. The audience loved it. They clapped and cheered and gave her tons of compliments afterwards. This was the beginning of my daughter’s love of theater.

I figured theater classes would be good for my high-functioning autistic daughter. Perhaps in learning how to interpret scripts, or deconstruct a scene, she might learn how to interpret life. The early classes were taken at the community center. They were simple and fun, and she loved them. She did some plays at with the community center. These were also simple and fun with a part for anyone who wanted one. Then came the plays in the park. The first play was a musical version of Alice Through the Looking Glass. My daughter wanted the lead, and she got it. Everyone assured me that it had nothing to do with the fact that she looked like Alice with her blue eyes and long blond hair.

Alice was a great experience. My daughter learned all her blocking and lines right away. She learned everyone else’s blocking and lines, too, and she regularly corrected and prompted the others—even when she was on stage doing a performance. We discovered she had a beautiful singing voice. The show was a triumph.

My daughter was on fire for acting. She decided to audition for the local community theater. I must admit, I had misgivings. At one time this theater had a strong focus on children’s theater and education with children’s shows during the school year that heavily featured younger actors, and a summer theater program for teens. Then they decided to cut the summer program and roll everything into just three shows during the year. The classes became little more than seminars, and the competition for roles became fierce.

Then there was the audition itself. The community center auditions had been easy-going. I knew that the ones at the theater might be more formal. Theater auditions can involve interpreting the language of the script into emotions, interacting in a meaningful way with people you just met a few seconds ago, and lots of eye contact. All of these can be problems for an autistic child. Still, I took her, and she did well. She even made it to callbacks before ultimately ending up painting scenery.

She went on to audition for other, less competitive theaters in the area. Sometimes, she got in, sometimes she didn’t. She performed another major role for the plays in the park. She got into two school plays in her middle school. Many of the plays she got into were plays that wanted as many children as possible and cast anyone who showed up. However, once she worked with a director, he or she would always cast my daughter over and over again in increasingly large parts. She’s incredibly good at taking direction (as long as it is specific) and has absolutely no stage fright or inhibitions when it comes to what she is asked to do. Need someone to come out during a scene change and lead the audience in the Hokey Pokey? She’s your girl. Want someone to run screaming off the stage, through the audience, and down the hall? She can do that, too. Plus, I’ve noticed she has a real stage presence. She sparkles up there.

Still, despite all her successes and a resume I would have killed for when I was her age, she never managed to break into the community theater where she first auditioned. It became her holy grail. Her grandfather thought that maybe she needed an in, so he bought her one of their theater seminars. At the end class, her teacher’s only comment was: I want to see sad, not what sad looks like.

I felt frustration well up inside me. My daughter worked hard to learn what sad looks like. I remember two years of her pointing to faces in books and on TV.

“What is he feeling?” “What is she feeling?”

She studied the emotions she saw so she could recognize them and know how to respond appropriately. It was something she had to learn—it didn’t come naturally to her like it does to the rest of us. I am endlessly proud that my daughter knows what sad looks like.

The seminar led to more tech jobs, but no real roles—not even chorus. This theater considers itself an artsy theater and it keeps its chorus size down. The people who run it seem more interested in the art than providing opportunities for the community to act. Unfortunately, with the recent economic problems, most of the other programs my daughter acted with have disappeared. This theater is rapidly becoming the only game in town.

Finally, she broke down. Once again she had made it to callbacks, only to end up building scenery. It was the same place she had been seven years ago when she started, and she recognized that fact.

“It’s not fair,” she told me. “They use the same people over and over again.”

And she was right. Theater is essentially not fair. The best way to gain experience and skills is by working with a director in a show, and those lucky enough to have that experience use it get into more shows where they gain more experience. It’s the Catch-22 of theater.

It’s a frustrating thing to watch. The director didn’t know how hard my daughter had to work to provide the audition performance that she did. He didn’t know that by even being up there at all she was playing to her weaknesses instead of her strengths. She was doing what all the books say she shouldn’t be able to do at all, and I am so incredibly proud of her.

We discussed getting her onto the forensics team at school. Participating in forensics is a great way to gain experience and learn skills without actually being in a play. There is a certain amount of school pride tied up in how you do at competitions, so the director of the program will spend some time working one-on-one with you, and that is invaluable. Of course, it can be daunting. There is maybe five feet between you and your audience with no fancy lighting to soften that fact. You learn to create a fourth wall really fast. But my daughter has never had trouble with that. She feeds off the audience when she performs, interacting with them as a collective much more skillfully that she can interact with them individually.

My daughter agreed to give forensics a try, and I spent most of the night sitting up with her. As I looked at her I thought back to that seminar comment.

If the teacher could only see her now, I thought to myself, she would see sad.

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