Neurodivegence with a difference

The family of which I am a member can rightly be called neurodiverse. We have myself a 45 Neurodivergent male- I am Âûtistic. My wife a 52 year old Neurotypical – Allistic.  A 21 year old Neurodivergent female daughter – Âûtistic – with a difference, but we will get to that later. An 18 year old Neurotypical – Allistic female and a 9 year old Neurodivergent – Âûtistic female. Oh and of course our six month old cat Spectro, who,of course is Neurodivergent because as Kathy Hoopman has shown us. All Fats have Aspergers.
If you got your head around that you will see there is quite a little bit of diversity happening  there with our neurology. But wait there’s more. Emily  our 21 year old as I said has even more diversity happening. Emily was born sans Corpus Callosum.

A what you say?

A corpus Callosum, it’s the middle bit, the bridge, the main connection between the two hemisphere’s of our brain. In actuality it is the largest white matter structure of the brain. It bundles about 250 million connections across the divide of the two hemispheres. (well that’s a layman’s explanation anyway. You really need words like Axon, neural pathways, and other such neuro terms. But I hope you get the idea.

But that is not all that is a little bit unique for Emily. On top of all this there are some other differences about the physiology of her brain, she has enlarged ventricles, some abnormality in her occipital and temporal lobes. Her hippocampus is unique in that one side is kind of normal and the other is like a squished pea. The squished pea side of course, is the side that most of use in the development of language.

So along with her being Âûtistic she is also neurodivergent in these other ways. Technically she has a disorder known as DCC Disorder of the Corpus Callosum, specifically a incomplete Agenesis of the Corpus Collosum.

Emily has always been a unique girl that has been a challenge to work out. Early on there were lots of the so-called milestones that were reached and some that were not. There has been a bunch of diagnosis’ applied to her as she grew up. ADHD, but it never fit. OCD, didn’t fit either. Her mother at one point suggested ODD but that does not in any way fit this unique young lady. At around 9 she was diagnosed Âûtistic. This was always the best fit for who she was, her unique behaviours, strengths and challenges. Yet it never was the complete story. There was always a nagging question of something else going on.

Emily has always been something of the ubiquitous square peg into the round hole. We love her to bits of course and care for her deeply and work with her strengths supporting her to become the best she can be.

In 2011 in February Emily had her first full blown seizure. I was rung by my ex-wife, Emily’s mum one Sunday afternoon to tell me she was in hospital having seizures. This was an incredibly scary and sobering moment. I arrived at the hospital to see my first born beautiful girl hooked up to monitors and sedated and very much barely conscious.

It could be meningitis, it could be this, the tests were run of course. They took her down to the radiography department and did at CT Scan. They came back to announce to us well she does not have meningitis. No Lumbar Puncher required. But she has no Corpus Callosum. This started a whole new run of understanding and a whole new journey of negotiating specialists and working out what is going on for this young lady.

The years following have been a learning experience. Em has small seizures here and there, generally in clusters, she is on a truckload of medication to manage the seizures and we have more insight into her as an individual person than we ever did.

The Âûtistic community tends to have a love hate relationship with film Rainman. In one sense it brought Autism into the public eye. In another it does such a stereotypical job of presenting Raymond Babbit as an Âûtistic that we battle these stereotypes often. The most interesting thing to me is that the character Raymond was based on a composite of two individuals, neither of whom were Âûtistic. The most well known of the two is the savant Kim Peake, now deceased. Kim, it was discovered had no Corpus Callosum. There is a very interesting video about him on youtube. It’s a 45 minute time period very well spent.

So a little snapshot into our little neurodiverse brood. It’s neurodiversity with a difference that is for sure. Even just now Emily, took herself to the shops to gather some goodies for tea. She is able to do this with support. A list of what she needs to purchase and where is helpful if you hope to receive what you expected to be purchased. Well tonight the bakery did not have the pizza bases we wanted. So Em asked them to set them aside for tomorrow. Well we wanted them for tonights dinner.

Emily does a magnificent job with the brain issues she has. Her comprehension of magnitude is very different to many other people. She may say the other day such and such happened. That other day could be 2 days 2months 2 years 2 decades ago. Her concept of this flows into time, money etc. Her ability to reason mathematically is almost non existent. Given with her unique brain development she probably should not have spoken and had visions issues. These are small issues to face, and what she has achieved is nothing short of amazing. It’s easy to forget how amazingly wonderfully she has managed things in spite of the challenges she has faced to do so.

I am reminded as I write of the line from Orwell’s Animal Farm.

All Animals are Equal but some more equal than others.

With apologies I rephrase this to All humans are unique. Some are more unique than others.  That really describes our Emily.

There are times of course where we would like to tear our hair out. There are times of course we want to squash her with love. The biggest lesson that I have ever learned is that all I can do is accept her for who she is, take note of things that are difficult and work with that to support her to be the very best she can be. To achieve everything she possibly can and to everything in my power to not stand in the way of that.