The Thaw Begins

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The weather continues to vary, and the graph of its changes could stand for an equation not yet quantified. Last night the low was 30 degrees, but Tuesday’s forecast high is 71 with heavy rain. We have reached the point of winter that reminds me of that arcade game with the ever-growing row of quarters that inch ever slowly toward a jackpot that really is the watched pot that never boils.

Against the backdrop of disappearing and reappearing snow, there has been some movement forward in my family, but there are lingering frustrations. The boys who taunted my daughter at lunchtime have been moved to a different cafeteria at her school. As for me, I finally had my epidural injection for nerve pain arising from my L3/L4 disc.

The epidural has definitely helped with my nerve pain. Six days after the injection, it seems as if it resolved 80% of my pain and redistributed the rest in oddball locations like the toes and bridge of my right foot. Before the shot, almost all of my pain was on my left side. What matters at this point is that my pain is tolerable. I sure wish the cortisone shot hadn’t bloated me (hooray for elastic waist pants!), but that side effect should be gone within a week.

Eileen still is still not thrilled about attending school, but what teenager ever has been? There is still a moment every school morning when there is a possibility that things will fall apart, but I’m so proud of her when she overcomes that inertia and gets on the bus.

I’ve started reading In a Different Key: The Story of Autism by John Donovan and Caren Zucker. I’m just a third of the way through this excellent book, but the experience has already been a bit cathartic, especially the passages about the “Refrigerator Mother” paradigm that reigned for entirely too long. Essentially, this theory insists that mothers create autism through poor parenting.

Unfortunately, my experiences suggest to me that this theory just formalizes a common layperson’s definition of autism, that the behavior of such children is nothing more than proof positive of a parent who is too lazy to raise a child properly. This has been the greatest frustration of my time as a mother. There have been a few people who shall remain unnamed, people who matter to me more than anyone else in this world, who in anger have told me that I created all of my daughter’s problems through my parenting. I have been hurt by such words, but there has also been the agony of knowing that I love some people who cling to ignorance despite all of the information I’ve given them, despite their witnessing firsthand many of the trials my daughter and I have endured and overcome together.

When my daughter turned two, a local hospital evaluated her intelligence as part of her intake for early childhood speech therapy. The staff informed me that their evaluation indicated that my daughter was “retarded.” Oh really? She learned to read less than two years later. She took the ACT in eighth grade and scored 31 in the English section.

Don’t believe what people tell you about your child and your parenting if it rings false.

And now we deal with bullies . . .

 

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A moment in time from better days

Lately, my family has been trying to cope with a problem that had no name until yesterday. I’ve had repeated, exhausting conflicts with persuading my daughter to go to school. To her, every cold and discomfort has grown to proportions epic enough to warrant a day home. Yesterday I finally had to propose a choice to her: she could go to school or we could visit the ER to investigate the source of her immobility. Really, when these episodes happen, it is like she makes herself as steady as a massive boulder, unmoved by any plea until she overcomes that inertia.

So we visited the ER. In all honesty, I was worried that she was letting everything fall apart because she had lost interest in living. She writes a lot, but she keeps her thoughts cloaked in secrecy, even to the point of creating screen names in non-western languages. I spied one of these aliases and found a blog where she had written: “I’m going to kill myself.”

I looked at the date. She had written that declaration months ago. How could I have missed the tremors of that earthquake that struck in the bedroom across the hall from mine? It’s one of those moments when you must accept that if psychic perception exists, it is unreliable at best.

When the ER staff interviewed us, I confronted Eileen with my knowledge of this writing. They helped us get to the bottom of our problem: Eileen is being bullied in the cafeteria at her high school.

The hospital gave me a list of signs of bullying: attendance problems, slipping grades, insulting oneself, etc. The only signs she didn’t have were missing items and injuries.

The abuse is verbal in nature. When Eileen walks by these boys, they announce that she has no friends and is overweight. She won’t disclose any further details.

For years I’ve feared for what could happen to my child whenever I’m not around. Why? Because Eileen does not tell the story of her life to me. Sometimes she tells her stories under the cloak of anonymity online. My daughter has autism. Her variant of it strongly disinclines her to tell the good or bad of her days.

Her patterns of communication and perception did not have a name until she was in 8th grade. That was when we had a diagnosis of autism. She makes eye contact with few people. Her speech and phrasing, when she does choose to talk, is markedly different from her peers. She can’t remember a time she couldn’t read. She can read and sing in two languages, English and Japanese.

Long story short, she’s had a hard time finding common ground with her classmates. Only a precious few students have taken the time to break through her walls. I thank God for them.

I struggle with knowing what to do next. I have contacted the school to request a change in her lunch setting. I don’t know these boys’ names.

If I could talk to them, I would tell them to stop this madness. Changing Eileen is about as possible as stopping a mile-long train barrelling toward you with your bare hands. Maybe once upon a time each of you fellows dared to be different, and you were forced back into the herd by bullies in or out of school. Whatever your reason for picking on my daughter, you should know that the only result will be hurt.

While she does not share your values, she still has feelings. She doesn’t care what is in style, what team won, who’s dating whom, or who drank how much liquor on Saturday night. She still feels loneliness, and you do nothing but wound her when you remind her of that.

No matter what you say, it is just not possible that she is going to come to school transformed into a skinny girl who wears clothes that please you. She will never pay you compliments on all of your victories large and small. Leave her be. She has the right to an education free of harassment.

My daughter doesn’t want her peers to know that she has autism. Maybe it’s time to disclose that. Maybe there would be some kindness and understanding. Aside from their comments about her weight, which are ridiculous in their own way, they really are harassing her because of her disability. Their comments aren’t much better than making fun of someone for needing a wheelchair.

I admire Eileen for what she has endured growing up. Think back on your school days. There have been entire school years where no one has called my child on the phone, texted her, or invited her to a party. How long could you have survived this?

She is the strongest person I know.

He’s Got a Lot of Love to Give

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My sister is wont to say that someone, whether animal or human, has a lot of love to give when it is highly unlikely such an observation is true about that subject. I have no idea if there is any irony in thinking that the hippo-costumed man in this picture also had lots of love to give as I could not see the expression on his face when my daughter approached him. We encountered him nine years ago during an ill-fated trip to the Toledo Zoo, when my daughter had one of her worst ever meltdowns at the snack bar because no straws or lids were available for the drinks (for good reason, to prevent wildlife-damaging litter).  By the time I took this picture, she was in a serene mood, having drained all of her tension through lid/straw protest.

Enough years have passed that I can discuss just how hard this era was for us. I had started working full time for the first time since before she was born, and she was freshly diagnosed with Oppositional Defiant Disorder (ODD). Her school had urged me to get her evaluated at a counseling center because she was getting sent to the principal’s office several times a week. I released the center’s findings to the school, and they banned her from the end-of-year zoo field trip because of her diagnosis. There is no point in window dressing this episode: this damned-if-you-do/damned if you don’t scenario sucked, most of all for my daughter.

So we made a special trip to the zoo on the following weekend, which went well except for the royal tantrum at the snack bar. We had begun play therapy at the counseling center. While she actually liked her therapist, she needed a lot of persuasion to walk into the building to see him. Once she decided to take off running from the center rather than go inside. This was not a good thing for two reasons: the center was situated in a crime-ridden part of our city, and I weighed around 250 pounds at the time. Once I caught up to her, I could not get her back to the center without carrying her. By the time we reached the building, my heart felt like it was going to explode from all of the exertion, and I wished that the ground would open and swallow me whole.

In the intervening years, I lost the excess weight, and my daughter mellowed out. She was diagnosed with autism last year, and the diagnosing psychologist looked at her history and mentioned that ODD was likely a misdiagnosis along the way.

Looking at this picture shows me that we both survived and had many bright moments along the way, even if we labored in darkness for so long.