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Wednesday, March 05, 2008

Black holes and other conundrums

I worry about dying brain cells.

I am no longer able to remember how to spell 'Tchaikovsky' but find that 'Schizophrenia' is a doddle.

I have mislaid my encyclopedic knowledge of dinosaurs and my ability to match the correct face and name of Thomas the Tank Engine and his rabble. It's a losing battle. Meanwhile I struggle with Pokemon powers, pronunciation and other evolutions. NPR drifts into my auditory processing system about "twins," separated twins. I listen with my ears closed because the quips that I hear set off alarm bells:- their sense of loss and being incomplete.

My working knowledge of twins is limited. I have friends who are twins. I have have friends who have twins. I have friends who have autistic twins both in real life and on line. When I had children of my own I would attend baby showers, a largely American phenomenon. The first time expectant parents would announce their double delight, twins were on the way. All those without children would say 'how cute.' All those with children, would think, silently, 'baptism of fire.'

I see no point in dwelling upon the past but at the same time I recall a period of years when I was always pregnant. The number of pregnancies is easy to count, but not good to share. It is enough that I have four perfect children now. Through all the fear, I can reflect upon one miscarriage in particular. The blood was a tip off at four months. It is the clue that shuts down your brain and heart because numbness is the only way to survive, especially if you have other children to thrive for. The telephone call was compassionate but at 17 weeks there was nothing to be done. We went through the same steps that we had been through before, the resignation and acceptance of the inevitable.

Once in the obstetrician's office I removed my glasses so that I would be unable to focus upon the screen. Instead I focused upon what possible arrangements we could make for our other children whilst I visited the hospital, again? Overnight stay or 'out-patients'? It was hard to resist the magnetic pull of the screen. My eyes were drawn to it's darkness and displayed a black blob. It was not a picture that I wanted seared into my retina. My ears remained open, listening to the silence. We could not ignore the sudden familiar detection of a rhythmic heart beat, hidden, until it was chased down, cornered and came into view. A hidden twin! A perfect, fast moving little shrimp of grey fuzzy dots.

It's not that I don't ever think about such things, it's more that I find it important to concentrate on the here and now of life, rather than the 'what if?' of years gone by.

The here and now, makes me wonder what percentage of his agitation, hyper-vigilance and anxiety is related to what he himself has lost, his twin? His reliance and dependence upon little talismen to help him through the day? The slew of stress. How much is autism, how much is being a little kid, how much is an absent presence?


Happy Elf Mom (Christine) said...

Wow, does he know about his twin? And do you know if it was identical?

My dad is a twin and they still wear the same clothes sometimes without meaning to. Even though they live states away. They've lost jobs on the same day and had other amazing coincidences.

Losing a baby does put a hole your heart though, doesn't it? :[

Unknown said...

Oh Maddy, I am so sorry. And yes, mrs. c, it does. And 27 years, 2 months and 25 days later, the whole will still be there.

HedgehogMD said...

My name is Sarah Edwards, and I am an Aspie (a.k.a. I have Asperger’s Syndrome) and I am a medical student.

I am working with another medical student, Sara Dungavell, on an ethics project about the meaning of words. We are working under the supervision of an ethicist named Dr. Jeff Nisker. Sara and I noticed that the common meanings of the words, “human”, “fully-functional” and “normal”, as well as how the words related to each other, get used to keep people on the Spectrum separate from mainstream society. We think in part it is because the definitions come from people outside the community.

We want to know how people within or associated with the Spectrum define these words for themselves, so we are asking some bloggers who are part of the Spectrum community if they would like to give us their own definitions. I was directed to your blog by another blogger who suggested you may wish to be involved and that’s why we are e-mailing you and several other bloggers.

Once we’ve gathered these new definitions, we plan on analyzing them for common themes about what “normal”, “human”, and “fully-functional” mean and how they are related to each other. We plan on presenting these definitions and analyses to other medical students and the academic community to try and get them thinking about people on the Spectrum differently.

Attached to this email is a letter of information that explains what the project is about again, and then at the end it asks for your definitions of “normal”, “human” and “fully-functional”. (Actually since this is not the actual email we sent out, the letter is not attached but if you wish to participate we will email you the letter)

Please read the letter, and then if you want to help us by being part of the research, email us back your definitions and any comments you might have about them. There are no right answers, please just tell us what your definitions are of these words and what they mean to you. Also if you know anyone else who might want to contribute please feel free to email this letter to them too. Feel free to answer beyond the scope of the definitions if you wish or to answer only one or two of the definitions. If you have any questions, or if you’d like to know more about what we are researching, please email me and ask them.

Thank you,
Sarah Edwards

M.D. Class of 2010
Schulich School of Medicine and Dentistry
The University of Western Ontario

Also I am very sorry to post on your comments since they do not belong here but I could find no other way of contacting you.

Haddayr said...

I lost Arie's twin, too.

He knows about it; he thinks √Čiden was supposed to be his twin and just hung around a while until he saw another opportunity.

I like that idea.

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