Well 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!