Recently I was standing in line, a long way from home to attend a conference on disorders of the corpus callosum. I found myself choking up as it became very, very real. Memories of being 35 weeks pregnant came flooding back and statements from specialists stating the words ‘agenesis of the corpus callosum’ and ‘this may lead to a very difficult life for her’. There was a lot left unsaid and after I heard the unexpected news and the initial shock subsided, I opted to focus on positive thoughts in the lead up to the birth.
Rather than letting the memories continue, I took a deep breath to compose myself and focussed on how fortunate I was to be attending the conference to learn and build our support network. It was the first time I had the opportunity to focus on the situation now that I’d dealt with my daughter’s challenges to breathe, eat and hear which still have no definite association with her brain, but rather the result of bilateral choanal atresia. We’ve certainly come a LONG way since those early days.
Agenesis of the corpus callosum (ACC) is a neurological disorder identifying the full or partial absence of a corpus callosum in the brain. The corpus callosum is made up of over two hundred million nerve fibres which allow the brain to transmit messages quickly from one hemisphere to the other. It’s still early days with development of research and understanding of this condition.
The birth of my daughter was my life’s greatest wake-up call and as challenging as the past (almost) four years have been, I can look you in the eyes and state firmly ‘miracles happen.’ And I don’t mean this in the sense that God showed up one day and planted a corpus callosum inside my daughter’s brain. I wouldn’t want to change her life or mine because I value our circumstances. We need to endure these challenges and value diversity. If willing, these challenges provide us with an opportunity to be more loving, compassionate, patient and kind.
The miracle which happened was a shift in perspective. As I accepted our circumstances and learnt to nurture my wellbeing, the boom gates opened to a community of support and immense gratitude for this experience. During a meditation, I saw my daughter (grown up) and I skipping toward the sun hand-in-hand, laughing and incredibly happy. When I lose sight of joy, I turn back to this vision and remind myself that I am capable of joy – it just requires a shift in perspective.
Attending this conference was the first time someone was willing to have a knowledgeable conversation about it. In my experience, many paediatricians and specialists were vague and discussions were often redirected to other matters. This is partly due to outcomes being so broad for every individual and in my daughter’s case, unlikely to present itself until she reaches school-age.
It was the second 2-day conference of its kind held in Melbourne and organised and facilitated by AusDoCC; a charitable organisation supporting individuals, families and carers affected by a disorder of the corpus callosum (DCC). The organisation stems from humble beginnings with parents uniting on Facebook which eventually led to forming a committee and AusDoCC was born. The organisation is only five years young and has been building its network and providing support through advocacy, informing and connecting those affected by DCC.
That’s where support begins – amongst us. Those with a personal interest in something can create supportive and lasting change for future generations. On behalf of myself and all the attendees I commend the committee for their tireless work and dedication not only this conference, but all the work they do to ensure those affected by DCC have an opportunity to thrive.
But it can’t stop there. We need the wider community to actively raise awareness of the condition and we need health professionals and educators to engage in improving their knowledge of the disorder.
AusDoCC secretary Maree Maxfield states ‘ACC matters and should be respected as a primary condition affecting 1:4000 Australians, many of whom have not had the validation they deserve’.
When the challenging effects of the disorder are finally recognised and supported, then those living with the condition have greater opportunities to reach their full potential.
In the opening presentation I found myself sitting next to a lovely young woman in her early twenties with ACC. This was no coincidence. One of the main reasons for travelling interstate was to link up with others living with the condition in hope of finding mentors for my daughter. She was pleasant and well-mannered, yet I sensed her discomfort in that room full of people. I approached her during morning tea for a chat and surprisingly she shared a lot. She has her driver’s licence and is going to be married soon. She expressed her discomfort with so many people around. She told me that when she was young doctors told her mother; ‘she’s there, but nobody’s home. So just head on home because there’s nothing we can do about it.’ Fortunately, were both able to have a giggle at how ludicrous that comment was. This young woman appeared absolutely fine and capable. And yet it can be an invisible disability. She has always had great difficulty with learning and challenged in social settings which led to feelings of isolation.
The young woman with ACC was high functioning. This seems to be a common theme. If ACC exists as an isolated condition, there’s greater chance of more positive outcomes. On the other end of the spectrum, some can’t live an independent life without significant support and in these circumstances, there are usually other neurological issues present in addition to ACC/ DCC.
I was fortunate to have an interview with Dr Lynn Paul to discuss my daughter’s condition and have my questions answered. She is a senior research scientist at Caltech, where she directs a research program studying brain-structure, cognition and social processing in ACC. She co-authored a children’s book ‘ACC and Me’ and is a co-founder of AusDoCC’s sister organisation in the USA, NODCC.
She explained that the corpus callosum helps the brain have greater processing power and processing speed.
People born without a corpus callosum have:
- Limited integration of motor and sensory information between
- Slower than expected learning new
- Slower processing
- Poor complex-novel problem solving
- Emotional
She encouraged me to teach my toddler one new skill at a time. Master the next new skill which needs to be achieved so it becomes automatic for the brain, before moving on to the next one. With all my recent research on neuroplasticity, this idea had a big thumbs up from me. The brain is capable of using many different systems to achieve what it needs to.
Norman Doidge, M.D, author of The Brain That Changes Itself writes:
“We often praise ‘the ability to multitask.’ While you can learn when you divide your attention, divided attention doesn’t lead to abiding change in your brain maps.”
Dr Paul used highways as a metaphor for living without a corpus callosum. It is possible to get from the suburbs to the city without highways, but using these alternate routes can take much longer and be more tiresome. By the time you get to your destination without highways you are absolutely exhausted. When your brain is missing the highway between its two halves, it has to use alternate routes to do even simple things – thinking is much more work for people with ACC.
It can be emotionally frustrating as well because while everyone else has access to these highways, the person with ACC may not even recognise their own difficulties and be vulnerable to misunderstandings.
To achieve better outcomes for children living with DCC, parents, carers and educators must help the child work with her limitations rather than try to force the child to function like others. For example, helping her learn how she perceives a situation and teach her how to self-regulate her emotions.
My daughter always seeks regular feedback and regulates her emotions through ‘huggies’. All she needs is hugs and she’s able to restore her emotions and get back on track. Trouble is it’s becoming so regular and trying to get her to self-regulate leads to guilt when turning down a hug. We try techniques like putting her hand on her heart and taking a deep breath. All in hope of enhancing her independence to deal with these situations when I’m not around. She doesn’t commence ‘big school’ until 2019, so we still have time to prepare.
Corpus callosum disorders are physical diagnoses (they can only be diagnosed by brain scan). People with corpus callosum disorders may have a variety of behavioural challenges. Educators, physicians, psychologists and psychiatrists may describe a child’s behavioural challenges using a behavioural diagnosis such as autism or ADHD. These behavioural diagnoses do not have a specific, singular cause; it is likely that ACC (the physical diagnosis) contributes to the behavioural diagnosis for some children and other physical issues contribute to the diagnosis in other children.
Behavioural diagnoses are a tool for describing and treating behavioural problems, and no matter what diagnosis best describes your child’s behaviour, therapy should always be person-centred, that is, unique to each individual rather than strictly boxed into a diagnosis. This person-centred approach is aligned with the National Disability Insurance Scheme rolling out across the country, which aims to enhance the lives of those living with disabilities and economic and social participation.
Every circumstance is unique and the greatest support we have is each other. If you, a family member or someone you know is diagnosed with a disorder of the corpus callosum in Australia, I encourage you to turn to AusDoCC for support and join us in raising the platform to achieve increased awareness, knowledge and connecting with one another through the experience.
In conclusion, nothing is conclusive. There’s always scope for the unexpected and that’s OK. Predictability is boring, the real growth stems from not knowing what tomorrow will bring and being completely OK with that. With this approach, all you can experience is the present there’s no certainty of the future and no time for pondering ‘what if things were different?’ They need to be as they are and the more joy you bring to that experience, the greater opportunity you have, to witness a miracle. I’m not being ignorant; address the challenges, do your homework, gain knowledge and support but then shift gear into cruise control and make time for the fun stuff.
For support:
Note: All medical related content within this article has been reviewed and clarified by AusDocc and their professional advisors.
By Lisa Marie
Lisa Marie is a holistic counsellor and meditation teacher and has a background in financial and education sectors.
Her passion is supporting the wellbeing of unpaid Carers and is developing Carer Escapes, to provide nurturing respite opportunities for Carers to retreat, learn and connect with others.
Ultimately, to encourage Carers to thrive in their caring role. Watch this space! www.carerescapes.com.au | @carerescapes To reach out, please contact Lisa Marie via
email: hello@carerescapes.com.au
