learning

Agenesis of Corpus Callosum Behavior

LazyteaLeave a comment

I really like this from the National Organization for Disorders of the Corpus Callosum

Below is an overview of the behavioral characteristics which are often evident in individuals with DCC. Please understand every individual is different. The abilities and characteristics for each child or adult with DCC may vary.

Delays in attaining developmental milestones (for example, walking, talking, or reading). Delays may range from very subtle to highly significant.
Clumsiness and poor motor coordination, particularly on skills that require coordination of left and right hands and feet (for example: swimming, bike riding, tying shoes, driving).
Atypical sensitivity to sensory cues (for example: food textures, certain types of touch) but often with a high tolerance to pain.
Difficulties with multidimensional tasks, such as using language in social situations (for example: jokes, metaphors), appropriate motor responses to visual information (for example: stepping on others’ toes, handwriting runs off the page), and the use of complex reasoning, creativity and problem solving (for example: coping with math and science requirements in middle school and high school, budgeting).
Challenges with social interactions due to difficulty imagining potential consequences of behavior, being insensitive to the thoughts and feelings of others, and misunderstanding social cues (for example: being vulnerable to suggestion, gullible, and not recognizing emotions communicated by tone of voice).
Mental and social processing problems become more apparent with age, with problems particularly evident from junior high school into adulthood.
Limited insight into their own behavior, social problems, and mental challenges.
These symptoms occur in various combinations and severity. In many cases, they are attributed incorrectly to one or more of the following: personality traits, poor parenting, ADHD, autism spectrum disorders, Nonverbal Learning Disability, specific learning disabilities, or psychiatric disorders. It is critical to note that these alternative conditions are diagnosed through behavioral observation.

In contrast, DCC is a definite structural abnormality of the brain diagnosed by an MRI. These alternative behavioral diagnoses may, in some cases, represent a reasonable description of the behavior of a person with DCC. However, they misrepresent the cause of the behavior.

Agenesis of the Corpus Callosum Revelation

LazyteaLeave a comment

IMG 5045Well it’s been quite a week. First Mico had a vet visit which went very well; but, requires that I manage supplements, new food, and massage daily. Then my 2012 Hyundai Santa Fe needed a new Intake Manifold and apparently new spark plugs and valve covers for a whopping $1,200.  Then, Wednesday I needed to take the SUV back to the shop because it was overheating. 

The heat moved in with the wildfire smoke from Oregon & Canada so being outdoors became rather miserable. THEN early Friday morning Maybelle, my youngest daughter now 20, sent me her MRI findings via text. My world jolted into a new paradigm.

She has near complete agenesis of the Corpus Callosum. 

Agenesis of the corpus callosum (ACC) is one of several disorders of the corpus callosum, the structure that connects the two hemispheres (left and right) of the brain. In ACC the corpus callosum is partially or completely absent.  It is caused by a disruption of brain cell migration during fetal development. ACC can occur as an isolated condition or in combination with other cerebral abnormalities, including Arnold-Chiari malformation, Dandy-Walker syndrome, schizencephaly (clefts or deep divisions in brain tissue), and holoprosencephaly (failure of the forebrain to divide into lobes.) Girls may have a gender-specific condition called Aicardi syndrome, which causes severe cognitive impairment and developmental delays, seizures, abnormalities in the vertebra of the spine, and lesions on the retina of the eye. ACC can also be associated with malformations in other parts of the body, such as midline facial defects. The effects of the disorder range from subtle or mild to severe, depending on associated brain abnormalities. Children with the most severe brain malformations may have intellectual impairment, seizures, hydrocephalus, and spasticity.  Other disorders of the corpus callosum include dysgenesis, in which the corpus callosum is developed in a malformed or incomplete way, and hypoplasia, in which the corpus callosum is thinner than usual.  Individuals with these disorders have a higher risk of hearing deficits and cardiac abnormalities than individuals with the normal structure. Impairments in social interaction and communication in individuals having a disorder of the corpus callosum may overlap with autism spectrum disorder behaviors.  It is estimated that at least one in 4,000 individuals has a disorder of the corpus callosum.

EVERYTHING makes sense now. I’ve spent the past few days going over her life in my mind. All the signs were there. We came so very close to professionals who could have made the diagnosis. It took an optometrist to actually order the MRI. My emotions are all over the place: sadness, grief, anger, disappointment, relief, joy, surprise,… Shifting gears from trying to get her up to “normal” into supporting her as she discovers her new normal which can’t be ike anyone else’s takes a lot of fitness of the clutch. I’m doing research and reviewing all my thoughts and feelings form the past 20 years.

Here are some of my first impressions:

* Professionals like nurses, doctors, teachers, & therapists should be familiar with ACC and know the symptoms. Had one person had the basic information that my niece said she did get in her basic college level psychology classes, we could have known that Maybelle had challenges that were not related to her personality or work ethic. And, was not related to what we were doing with parenting, diet, environment, behavior modification. I could have known that I was trying to teach a fish to climb a ladder. Would have saved me so much energy and time not to mention have given her the early intervention she needed.

* I can’t know how she perceives the world. She cannot know how I do. We can have conversations and accommodations; but, we live in very different worlds.

* Those with hidden disabilities are frequently discriminated against. This is particularly problematic for people with ACC because they don’t have the social cues or context for how to handle it. It’s the point where discrimination becomes abuse. Also, professionals who think they know it all but don’t know about ACC will send her down trails to nowhere in therapy or rehabilitation. I need to find ways to identify this and help her to learn to identify this and deflect it. She needs to build a strong sense of self as a person with ACC.

* As parents and teachers (I homeschooled my children), we take on great responsibility. Sometimes this responsibility is misplaced. I was once told by my therapist that homework completion is between the teacher and student and not something parents should get involved with. We are tempted to think it is our responsibility to hack education or parenting to offer support and resources in the right way for each child. With Maybelle this was impossible. Her behavior was annoying – interrupting, inattention, deflecting, stubbornness, rejection, lack of interest in anything really, inability to perform physical tasks. I tool on responsibility for all of it. In this full moon, I have released all of that. It was something I needed to learn. It’s easy once the child reaches adulthood; but, not if one feels like you have failed that child. My doctor was concerned when May wasn’t toilet trained at 18 months. I wasn’t, “some children just take longer.” She was toilet trained at age 3. Her dad tried very hard to teach her to ride a bike or climb a tree. She only learned to ride a bike at 18 and is still not the best bike rider. Now, it all makes sense. As parents we sucked with May but how could that be when we felt so successful with Jean May’s older sister? Now – we know though May’s father is no longer around to share this revelation.

I will post again as we head down this uncharted trail. Be Happy! Be Kind! Count your blessings!

Learning Chinese

LazyteaLeave a comment

懒惰的茶 – Lazytea

In April of 2019 I turned 60. This is auspicious in the Chinese lunar calendar because it is the completion of one life cycle through the zodiac and elements. 12 signs, 5 elements. It is considered the age of 100. Supposedly we are disconnected from the birth karma and now make karma for the next reincarnations. This feels good. But, how to commemorate it properly?

Qigong hanziI wanted a random challenge. Something new and different and unrelated to anything else in my life. So, I downloaded Duolingo app on my phone and began to study Chinese. I’ve studied Russian, German, & French but only knew a few basic words in Chinese. At first it was counting and simple phrases of greeting. I struggled as it became more difficult trying to memorize the Hanzi and Pinyin and reproduce the pronunciation. Then, while attending the National Qigong Association Convention in Rochester, Minnesota, I met Mark Reinhardt (ThreePureRivers.com) and a few others who told me to learn to read, write, and understand Chinese but not to worry about proper pronunciation because to native speakers of English this is next to impossible without total immersion. That made my life much easier. I focused on learning grammar and vocabulary.

Two years and a few months later I can say that I do understand quite a bit of basic Chinese. Most importantly, I learned that their grammar doesn’t have a lot of nuance. Yes, there is please, thank you, and should. But, there isn’t much softness like “would you please give me a ride?” It is more like “Please give me a ride?” Direct translation seems commanding and demanding. Coming from Minnesota where the custom is to be overly polite and offer something three times or convince the person they want to indulge, I was taken aback by the apparent abruptness and almost rude demanding nature of the Chinese people I met. Frankly, I felt self-conscious and nervous around them. Even my ESL students from Taiwan and Cambodia who were desperately trying to learn English struggled with softening their language to be less politically incorrect. Telling your boss or a customer, “You take this!” Instead of offering it “Would you like to try this?” Or “here is my report/work” is not met with quite the same regard.

Chinese Grammar is much simpler than English. And, the language is very economical. The words and characters are more expressive and symbolic. In English we say “Relax!” The Chinese say, “Fang Song.” There is one word for he & she thought 2 different symbols. No articles at all! And, words don’t have a gender which makes it much easier to learn than French, Russian, or German.

I am just really starting to learn to write the characters. It takes more focus and I need to work from a book not the app. So, it will be a bit longer journey. I’m so pleased that I took on this endeavor. I have learned much. Though at my age, I may never get to travel to China in this lifetime, I do get to practice now and again with friends; and I am better able to understand Chinese speaking English. It has added depth to my Qigong study too.

You can teach an old dog new tricks and probably old dogs should keep learning. Now back to my C-dramas on Netflix.

再见 – Goodbye

PS Duolingo does a good job of motivating and gamifying learning. But, I would recommend HSK for someone beginning to learn with no prior experience with a non romanized language such as Russian which uses the Cyrillic alphabet.