Jealousy

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Jealousy is the gut-twisting indigestion of emotion, and I’ve felt plenty of it lately. I’m hoping it’s just a step in grieving recent losses, like treading the waves of chronic pain or seeing how my daughter is struggling more to find her place among her neurotypical peers.

I confide my jealous thoughts to my husband, and he gently warns me that I’d alienate the people involved if I revealed such feelings. I then feel a bit jealous that he can squelch his more toxic thoughts before those who might be wounded or angered by them. I’m not the kind of person who can vent before an ideal audience whenever the need arises. This is why I have a blog and he does not.

I’m not jealous of things I see and read online. My Facebook friends can post as many shots of new campers, bigger houses, and graduations as they wish. I do not begrudge them their pride. It’s enduring the sight and sound of people close to me bragging about their good fortune in matters that they know trouble me.

I could turn this around and focus on their callousness. If I had a friend who struggled with infertility, I would not brag about my unplanned pregnancy. Why in the world must I hear chapter and verse about how their children who are close to mine in age are fielding suitors and learning to drive cars? My daughter is a smart, autistic sixteen-year-old who’s gotten bullied by males and can’t tie her shoes. She resists any suggestion of her learning to drive. I love my daughter to pieces. I wouldn’t trade her in for another child, but it is hard to witness the widening distance between her and her peers.

It is hard to capture the feeling I get when I hear that the child of one of my friends has achieved something that stands at some hazy distance in the future for my own. It’s a confrontation with two things: the reality that autism is a developmental disability and a reminder that I ultimately have not surpassed the jealousies of my youth. When I was sixteen, I envied my classmates who were dating or could drive cars without failing their driving test twice. Nevermind that my daughter has told me she doesn’t want to date or drive a car yet. It burns me up that she is missing out on the same things I did, even if she claims to be indifferent about it.

When I hear my friends brag about their teenagers, I silently judge them for living through their children, but isn’t my dread about my daughter’s present and future just a photo negative of their bragging? Why should I mourn that my daughter has none of my teenage goals when my achievements of those years translated into naught in my adulthood? I was a bulimic National Merit Finalist who squandered two attempts at a college education, who half-ass stalked my unrequited crushes. It’s a good thing she’s not my clone. I’d have been tempted to send her to a convent with adjoining ECT clinic.

Last semester, my daughter had health class, and she confessed that she laughed out loud when her teacher mentioned the evils of LSD because she remembered my anecdote whose tagline was, “LSD cured my bulimia.”

Yes, that is exactly how I earned a three-day stay in a mental ward at age 19, my insistence to student health that a hit of acid had cured my bulimia. I should relish having a daughter who can enjoy those stories without the least temptation to recreate them.

She will do what’s she feels is worth her time on her own stubborn schedule. Feeling as if I’ve been wounded when I hear that a friend’s teenager has already passed points a, b, and c is an emotion I wish I could exorcise from my heart’s repertoire.

In Like a Lion and Out Like a Lamb

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I’ve neglected this blog for half of February and nearly all of March. I saw no point in broadcasting regular updates in my ongoing tale of woe. Of course, there have been happy times, such as seeing how our elder guinea pig has taught the younger one how to demand more hay. By the way, I’ve gathered that the secret to getting more feedings is to act as if one has never been fed since birth, that one’s girth has been attained solely through the act of respiration.

My daughter’s continuing troubles and my ongoing nerve pain have cast a pall over these bright moments. Meteorological winter has lingered far too long as well. We woke up Wednesday morning with a snowfall three inches deep covering the roads. Usually, I dread the prospect of driving during a winter storm, but I felt fearless and relieved at driving through that snow. School had been cancelled for the day, so the day was free of yet another attempt to evade attendance. Spared that struggle, I felt there was nothing I couldn’t face that day.

The next day I received the dreaded truancy letter informing me that my daughter has missed too much school. Nevermind that she has no unexcused absences. This is the last thing we need. I don’t want to relate this mess to the truancy officer. However, I will do so if necessary, just like I already did when I wrote a letter to her school for their records to summarize the crisis. I wrote that letter at the suggestion of her therapist. I think the exercise was therapeutic solely for me.

Last week I had a meeting at the school and learned some of the things Eileen has been doing. She is not inclined at all to tell me much about school, so of course, I was surprised at some of the things I heard. It sounds like she is torn between checking out in the style of Melville’s Bartleby (“I’d prefer not to.”) and protesting the curriculum in general. For instance, when English class starts and her classmates have their notebooks and The Plays of Sophocles ready on their desks, Eileen pulls out a book of her choosing and reads for pleasure for the rest of class. Two such books she read during English class were Susan Powter’s Stop the Insanity and Erma Bombeck’s The Cope Book. I didn’t know whether to hang my head in shame or applaud her campy reading choices. My inclination toward the great works of literature is also lacking.

I so wish that she would reveal her thoughts, hopes, and fears. It’s not like I’m a stranger to her struggle; I am only ignorant of the particulars. The difference is she is several years younger than I was when I had my “breakdown”. My troubles didn’t truly sink their tentacles into me until I went away to college. In a way, she has more to lose due to her age.

I feel like I’d have more luck cutting a diamond with my bare hands than getting her to tell me what is really going on in her mind. Whether or not she chooses to take me into her confidence, I need to find a way to let her know that madness is no refuge; take the help that is offered you to evade it. Madness is not a vacation full of cozy reading and just the right amount of sweet and salty to satisfy your hunger. It is a full force gale that can only be calmed through doing the very things you don’t want to do: listen to those who love you, follow your doctor’s advice, show up at the right time, do what needs to be done first and then bask in the glow of pleasure reading and the like later.

As for my issues, I’m still having problems with nerve pain. The partial relief I had from the L3/L4 epidural injection wore off six weeks after I received it. I also have nerve pain that doesn’t correspond to degeneration in my spine. It looks like it’s possible that I’ve developed fibromyalgia. I have a referral to a neurologist to eliminate other possible diagnoses.

Somehow this pain is easier to deal with than my daughter’s ongoing anxiety and attendance problems. I’d rather live with that than go back to high school.

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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.