Each year I take a few days from work to help my daughter get ready for school. This morning I made a quick walk through a local public garden to capture some late summer blooms. Bumblebees attended sunflowers both tame and wild. I also spotted dew on some dark caladium leaves that looked like something from a dream:
I will close with a few other pictures from today’s walk, and then I will return to the yearly ritual of the back to school. The next step shall be the haircut. At least the hairstyles nowadays are simple and free of the perms and big hair of my school days.
This weekend we received some much-needed rain and cooler temperatures. The turn in weather bore hints of fall, which I would whole-heartedly embrace if not for the turmoil I feel within when thinking of what fall may hold for us this year. It’s no good to consider the future with worry over what could go wrong, but that’s exactly what I’m doing. I’m terribly worried that we’ll have another school year that my daughter will barely tolerate. I keep telling myself that it’s utterly counterproductive to think in such a way, that worry improves the future about as well thought alone can make the hands of a clock move faster.
Last week I read Dicken’s A Tale of Two Cities for the very first time. I’ll try not to spoil the plot for those of you who haven’t read this classic, but I will mention that there is a poignant reverie wherein one of the characters imagines some glorious aspects of a future that stretches across several generations. Perhaps it is not natural for anyone to think so far into the future, but I found that I could not or would not think more than two to three years into the future. To look any further seems like delving into a choose-your-own-adventure where the choices seem impossible to make.
I’m still motoring through Agatha Christie’s back catalog, and the novel Why Didn’t They Ask Evans? has me impressed with how quickly its various characters are able to communicate by post or phone. It has me thinking that I too once lived in a world free of email or cell phones, and I don’t recall having much trouble making plans with friends or family if I wanted to emerge from my hermitage.
I can’t seem to remember how we arranged times or places with accuracy. I really can’t remember how we made things happen, how for instance we’d know to show up in front of the bookstore on a particular day and time. I don’t remember anyone failing to show up for such rendezvous. Late at times, yes, but absent, no.
This failure of memory seems absurd to me. It’s not like the first generation of car drivers forgot how to ride horses or how to read a train schedule. The part of my brain responsible for remembering how I made plans before I had a cell phone must be the same region that eventually forgets the particulars of a brand logo once a new one is adopted. This brand-forgetfulness has been a lifelong minor plague. When I was seven years old, my family passed through a small town that still had an older version of the K-Mart logo. The relief I felt at seeing the older logo was akin to dreaming of a friend I hadn’t seen in years (and said friend looking the same as when I last saw him or her). It’s the relief of knowing that your memory is longer and deeper than you suspect, even if your mental search engine doesn’t deliver an answer when you want it.
Now I feel like a cell phone is a shopping necessity. I could miss a call or text from home asking me to add something to my cart. Or, heaven forbid, I could “lose” my daughter or husband in the store. This is a part of life before cell phones that I do remember. My mom had a knack for disappearing in department stores. The larger the store, the greater the probability she’d slip away while I was thumbing through 45 rpm music singles or combing through a shirt display to find one in my size (which I could get only if it was on sale). I’d look up and Mom would be nowhere in sight. I’d spend the next half hour wandering the store and finding her only at the moment I’d given her up as lost for good. I’d spot her right before she slipped into some alternate retail reality where the pictures of mothers and not children are to be seen on milk cartons.
I’d have appreciated some way of knowing exactly where she was, but a cell phone would have diluted her mystique I suppose. Unless she went missing in a store, I had persistent knowledge of her whereabouts. I didn’t have to wonder if she was in the bathroom or the backyard or the planet Venus. I just knew. Perhaps such transparency was exhausting at times.
How did we let others know where we’d be and when we’d get there?
I haven’t posted a recipe in at least half an eon. Yesterday evening my daughter and I attended a summer potluck picnic at Bittersweet at Betty’s Farm here in Lima, Ohio. Bittersweet offers a range of services for people with autism. My daughter has been participating in their periodic social living programs for a couple years now.
Three times a year (weather permitting) there are gatherings for all of the families served by Lima’s Bittersweet. Yesterday’s picnic offered the full array of Ohio picnic fair, from ambitious dips served in Crock Pots to cream pies.
Pictured above are my indulgences from the picnic. Yes, I rested a chocolate chip cookie on top of a slice of gouda cheese, and all was good. I was so delighted to spot a ramen salad on the buffet tables that I filled a bowl with it.
I hadn’t thought to make a ramen salad myself until today. I decided that I’d rather not add sugar to my version. I’m finicky about sweetening an otherwise savory salad because it’s so easy to overdo it.
Here’s my super simple version of ramen salad:
Unsweet Ramen Salad
(good for a picnic potluck or a dinner inspired by such cuisine)
2 – 3 oz bags ramen noodles, your favorite of the simple flavors; I chose chicken
1 16 oz bag coleslaw mix (shredded cabbage and carrots)
1/2 cup additional carrots, sliced (optional)
2/3 cup Italian dressing (use more or less to taste as long as the salad is saturated)
1/2 cup roasted peanuts
In a large mixing bowl, stir together the Italian dressing and ramen noodle seasoning packets. Break up the ramen noodles and add to bowl. Add the coleslaw mix, carrots, and peanuts to the bowl. Stir all together gently, lest the noodles and cabbage scatter about your kitchen. Cover and refrigerate for an hour before serving.
Now that I’ve shared that recipe, I will offer a few of the highlights of the picnic aside from the food. There was a spirited bubble battle. I so wish I’d brought a camera aside from my cell phone. My daughter is just emerging from depression, and I was thrilled to see her so happy and engaged in the presence of others:
The picnic’s music was great as well. I heard Ike and Tina Turner’s cover of “Proud Mary” for the first time in over a decade. I mustn’t forget to buy a copy of it. How did I go so long without having it in my sonic arsenal?
It’s one of those songs that’s bound to grab people’s attention. I could tell that about a third of the people at the picnic had not heard it before. I was so delightful to see another generation won over by this song’s impossible, arresting charm. One after another just froze in place long enough to “tune” into the song and begin the toe tapping and hand clapping.
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.
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.
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?