Book Review: Look Me in the Eye

Several years ago, I ran across a book in the bookstore which I intended to read sometime, but never went on to read. It was called Running with Scissors. Yes, the title hooked me. So, recently when I discovered another memoir called Look Me in the Eye: My Life With Asperger's and saw that it was written by the "careless" author's brother, I checked it out.

I have been fascinated with autism and asperger's syndrome for quite some time. I remember reading books about autism in college, during my special ed. curriculum, even though they weren't required reading. My mother had been trained as a special ed. instructor and did some teaching both prior to and in the middle of her work as a Salvation Army officer. I didn't intend to follow that route, but my college courses required a short practicum and I ended up working in my mother's classroom side-by-side with her for a brief stint. She dealt with severe and profoundly handicapped individuals. I have very fond memories of that time in her classroom and the chance I had to work (or perhaps I was only observing) alongside her.

Later in my life, I worked with one autistic student in the elementary level (low level autism - but a very sharp kid inside!). Plus, I had suspicions that two students in our school, whom I became very fond of, were possibly dealing with asperger's syndrome. They were very intelligent and articulate, but they did struggle with communicating with peers. I thought they were delightful and their quirks were endearing (even if, at times, frustrating).

I found John Elder Robison's book, Look Me in the Eye to be a delicious and engrossing read. He is a gifted storyteller. For most of his life, he was unaware that he had asperger's syndrome. He chronicles tales of his early life, dealing with the difficulties of cultivating friendships when he sort of "spoke a different language." He tells fascinating stories of pranks he pulled (several I just had to share with my family - hope I didn't give ES any ideas).

Despite enduring a horrible home life and dropping out of high school, he nurtured his obsessions and it led to a way out. He tells of designing the wild special effect guitars used by members of the band, KISS. He tells of working for Milton Bradley, designing talking electronic toys. But, he also shares the insights he learned which enabled him to function more normally in society.

He discusses the stigma of being different, something he always recognized but couldn't understand. At one point, he mentions that he wishes his disability were more obvious. People treat those in a wheelchair with compassion, but they don't extend the same sympathies to those who have a conversational handicap and lack the ability to read social cues others understand innately.

John Robison is a remarkably gifted individual who plowed through a lot of garbage (ha - at one point he plays a prank on some academic elites by concocting a story about being a waste management engineer!) to carve out an interesting and productive life. His story was funny, unusual and deeply human.

Book Review: A Thousand Splendid Suns

I finished listening to Khaled Hosseini's second book, A Thousand Splendid Suns on Friday night but haven't had a moment to review it until now. I am such a tremendous fan of his first book, The Kite Runner, that I was too eager to wait in line at the library for a copy of his second book. There were 9 holds on the book, but only 1 on the audio-version.

I have to say it was very difficult to listen to. For one thing, I don't get much opportunity to travel alone in my van (this is where I primarily listen to books) and it was not appropriate for my MS to listen to. I finally began listening, in snatches, while taking my ES to and from his wrestling practices, and in longer stretches, while cleaning during naps or washing up dishes after dinner. I may also struggle with my descriptions, since I didn't have the benefit of visually seeing the character's names. If I had it to do over again, I would have waited for a copy of the book.

A Thousand Splendid Suns sucked me in from the very beginning, with the introductory tale of Mariam as a child, living an isolated life with her mother and craving the weekly visits from her father. Mariam's mother had been a servant in Mariam's father's home and when she became pregnant, it was disgraceful to this well-to-do, prominent family. So the father, Jaleel, built them a small hut outside of town.

Mariam's desire to be recognized as a legitimate part of Jaleel's family turns her life upside down. At age 15, she ends up being married off to a much older man who lives in Kabul. I found it very difficult to enter into the wretched conditions of her life and the lives of many women like her in Afghanistan.

It was, in many ways, a heartwarming story of a friendship that crosses generations and a testament to the strength and courage of women who endure hardships. However, I didn't feel that these characters drew me in as strongly or experienced the level of redemption offered in The Kite Runner. When I finished The Kite Runner, I immediately wanted to turn back to the first page and begin again. Although, I would read this novel again, I don't think I could handle reading it again for quite a few years. It was engaging from start to finish, but I found myself both depressed and enraged by the atrocities and injustices.

I will say that I continue to be a fan of Khaled Hosseini. He has crafted another epic novel with a sweeping story of two characters who come alive on the page and walk you into their world. He did a fabulous job of writing from a feminine perspective. At times the prose was so beautiful, I wanted to go back and read it again. It was powerful, though disturbing. A recommended read, but not an easy read.

The Boy is Back

Back to himself, that is. Apparently, the increased levels of ibuprofen have been effective in easing his pain in the legs. At lunch-time, he proudly showed his daddy that he could even jump.

I had never heard of reactive arthritis before. Yet, today, I was thinking that perhaps I even experienced reactive arthritis many years ago. I was working for the Claims Management Office at the University of Illinois as a temporary fill-in for a worker who was out for four or five months. I remember that it was a frustrating position because legally, as a temporary employee, I was not allowed access to the confidential files. Yet, I would receive calls from people expecting me to provide them with answers.

One day, my right arm began to hurt and within a few hours, I found that I could not even lift a stapler. Working in Claims Management, (ha) they immediately sent me to a doctor to check for carpel tunnel syndrome (as if I had spent my days constantly typing important confidential information instead of wondering how I could make myself appear to be busy without really being busy). The doctors never did determine what caused the pain, despite many lab tests.

I was finally advised to wrap the arm and avoid using it, while taking 800 mg pills of ibuprofen (we're talking "horse-pills!") several times a day. At the end of two weeks, when I removed the sling, I found I was able to resume using my arm normally. This memory has certainly eased my mind. I have never had another episode like this, so perhaps my son will not have recurring episodes like this either.

Vote for St. Vincent's

This is just a reminder. You can vote once every 24 hours through March 31st at http://www.colgate.com/starlight for my niece Amelia's hospital, St. Vincent's, to receive a fun center for their pediatric care unit. At the moment, St. Vincent's is in second place. For more information, see my post titled "Take Time to Help a Kid Cope."

Dr. Jekyll and Mr. Hyde

Why is it that children whine and moan and seem extremely ill at home, yet when you arrive at the doctor's office, this transformation occurs and suddenly nurses are happily conversing with your seemingly healthy, animated toddler? The doctor who saw my YS in the hospital, Dr. Freeman, had suggested I wait until Wednesday to make an appointment if the leg pain didn't diminish. But, when my MS awoke crying that he couldn't get out of bed because of the pain in his legs, I began to think through what it would look like to take him on Wednesday (my husband works Wed., but not today).

I pictured myself (not a body-builder, mind you) attempting to carry a 40 lb. toddler and a 30 lb. infant into the doctor's office. I finally decided I would have to put them in the double stroller and roll them in. Still, it would mean exposing my baby, who was just released from the hospital, to more germs and illnesses. I knew I couldn't wait until Wednesday.

So, I called and explained his history: complete change in appetite starting in Dec.; concern from the Parent's Day Out workers because he complains about the noise every time they go to the common room for group play (they have been taking him to a quiet room and reading to him - I assumed he continued this because he loves one-on-one attention and being read to); after they mentioned it, I began to notice he will leave the room if I vacuum and will cover his ears and say his head hurts if there are loud noises; beginning in January, daily complaints of fatigue - too tired to eat, too tired to play; ER blood check came back negative for leukemia; then ER trip for ear infection, treated with a round of antibiotics; lingering cough; rash of unknown origin; red eye; and finally, two mornings of waking with pain in his legs to the point of demanding to be carried and unable to stand to toilet.

Despite an already full schedule, they squeezed him in with ... none other than, Dr. Freeman. Since my husband kept the baby home, I only had to take an umbrella stroller. The waiting room was full of very sick individuals and I was paranoid we'd come home with even more trouble. He was mad at me because I wouldn't let him go play in the toy area. I had the upper hand - he couldn't walk!

Dr. Freeman arrived and asked MS to stand. Can you believe, the boy just stood up on his tip-toes? Next, he was asked to put his weight on his heels and he was able to do that as well. Dr. Freeman asked if he could walk to his momma. He did. Then, he asked him to run to me. He shuffled over. I was flabbergasted. I said, "Patient - BE HEALED!"

However, the dr. did believe that he was in legitimate pain. He observed that my MS's gait is not normal. Dr. Freeman believes my MS is suffering from something called Reiter's syndrome or reactive arthritis. This is an inflammation in the joints which sometimes develops after a bacterial or viral infection somewhere else on the body. His suggestion? Give him children's ibuprofen 3x daily and if it is not 90% better by Friday, return to have lab tests.

I went home and looked up reactive arthritis. It did mention that it is often accompanied by red eye or conjunctivitis or a rash. Although, most of the sites mentioned the rash as being located on the hands and feet.

My MS did walk some later in the day. When we went to pick up the ibuprofen, he complained that sitting in the cart was bothering him and said he wanted to walk. He walked like an elderly individual out to the van! He also walked into the house to show Daddy that he could, in fact, walk. However, he didn't feel that the ibuprofen helped the pain and he again requested to be carried to bed.

At this point, it is a waiting game. We are trying not to worry too much, but do have some gnawing doubts in the back of our minds. I will say it is SO MUCH EASIER to keep up with the two little guys when one of them won't walk. I actually had every room straightened in the house prior to leaving for the dr.'s office. That doesn't happen often enough. Still, I'm hoping he wakes up tomorrow with more of the presence I saw at the dr.'s office - that cheerful, compliant, talkative demeanor that always charms the socks off those nurses!

Sometimes When it Rains, it Pours!

I am grateful to report that the baby had an uneventful night. He slept well and I slept well (with no computer around, I actually made it to sleep at 11 after reading for two hours). It is amazing how one shot could turn around his serious illness. Now, if they could just come up with a shot for other serious issues in life. Makes me think of a fabulous song called "Magic Wand" by Chris Rice, about wanting a magic wand to wave and make everything all right. (In checking the title, I just discovered Chris has a blog ... there is something I'll have to peruse, but not tonight, or I might add to the illness rain).

By this morning, I was anxious for the dr. to arrive and discharge us. Perhaps it is a good thing he was delayed a bit. I called home to express my frustrations and my husband informed me that my MS also had a great night's sleep, but was complaining of leg pain. He refused to walk all day. My husband suspected he might be garnering attention because Mom has been gone two mornings in a row.

However, when the dr. came to check my YS, I mentioned my MS's recent trips to the ER, the ear infection, the antibiotics course, the "rash of unkown origin" and now the supposed leg pain. He said the pain is probably legitimate and sometimes children experience a temporary arthritic pain after a virus. To test it, he suggested I see if MS ran to me when I returned home.

He remained seated on the bean bag, watching tv all day. He finally let me put a diaper on him, since he couldn't stand up to go to the toilet. He is complaining of nasal congestion, so I would agree that this is probably viral. I am hoping the dr. is right and he will be fine in a day or two. Will he miss another Parent's Day Out? Will we succomb to the deadly flu going around? Will I ever get that haircut and highlights? Stay tuned.

Missing Entry Found/ Hair Appointment Lost

I popped on quickly to see if my birthday post for Andre' ever showed up. I had written the draft on the 24th, but waited until last night to "publish post," wanting it to show up on his birthdate. Unfortunately, I found it. Blogger published it under the Sun., Feb. 24th date. So, sorry Andre' - it showed up on the wrong date. Blame my neophyte status, but know I meant for it to show up on your birthday.

I am only on for a few minutes today. The cough I mentioned turned deadly in the middle of the night. At midnight, I started running a vaporizer for my YS. At 3 a.m., I tried giving the baby a nebulizer treatment, hoping that would help him breathe easier. At 5 a.m., I realized he was really bad off because his chest was sinking in with each attempted breath. I had visions of pneumonia (see earlier post about my own experience as a toddler with pneumonia). This was my third trip to the ER in a month's time. It normally takes 30 minutes to drive there. I made it this morning in 15.

As soon as we arrived, they saw his distress and admitted him. He received a different breathing treatment, a steroid shot and a chest x-ray. They told me he has a severe case of croup and that they would observe him for an hour and then probably release him. After the hour, the doctor decided he still had sounds of stridor, and given his condition upon arrival, they admitted him to the hospital.

Thankfully, the shot seems to be clearing his airway restriction. He has been patiently trying to bide his time in that little room. The nurse told me I could take him on a walk through the halls if I wanted, but I have no desire to be near any other sick patients in the hospital, since the place is crawling with severe flu victims.

I was amazed at how timing has seemed perfect today. I placed the order for breakfast and the baby fell asleep, so I had a brief nap as well until the dr. came to inspect him. He ate breakfast and played quietly with a few toys a nurse had brought. John called to say he would come relieve me after giving my MS his lunch (ES had to go to a wrestling meet this morning at 6:00 a.m.). When YS's lunch arrived, the cleaning person did, too, so she was able to mop the floor while baby was seated on my lap eating. He played for a while longer and then I put him in the crib and turned on the TV. Just as he fell asleep, my husband called to say he was in the parking lot with MS (MS was not allowed in the hospital because of his recent viral rash and we didn't want him exposed to anything).

I'm just praying MS will take a nice nap, so I can get a bit of sleep before heading back to the hospital to spend the night with the baby. The dr. said he should be released tomorrow morning. MS is so sweet. He wrapped up a little treat he wants me to give to baby when he wakes up. Awww!

For now, I am really grateful that MS doesn't seem to be having as much difficulty with the cough. When I was hospitalized with double pneumonia at age 3, my infant sister was also in the hospital with pneumonia. I can't imagine having two small children at home and two infants in the hospital. I wonder if my parents had a sitter at the time??? Did they do this tag-team stuff and meet in hospital parking lots? I'll have to ask them some time.