Showing posts with label T-21 Blog Hop. Show all posts
Showing posts with label T-21 Blog Hop. Show all posts

Friday, November 21, 2014

The #T21BlogHop - November 2014

It's November and time again for the #T21BlogHop.

I know things have slowed down around here lately, and that has been a regrettable necessity.  It will be more apparent in the coming weeks the whys and hows and WTFs, but for now I will endeavor to keep this blog hop running and catch up on my #IntheNews posts.

In the meantime...

Inclusion, and the necessity for, the benefits of and the undermining thereof have really been on my mind lately.  Not just in my personal life and the upcoming kindergarten debut of my twins in the fall; it's everywhere I seem to look or go lately. 

In my mind, if it's still a question, if I still have to whip out, on the fly, an article on why inclusion benefits everyone, if I still find myself having to explain that yes, they are going together in September, to the same school and possibly the same class and everything... then this topic still has to be addressed.  

So, for November, the theme is INCLUSION.  As always, non-themed disability advocacy posts are welcome.

Add a post.  Tell your friends.  Spread the word.  Inclusion benefits everyone.

This blog hop will be open until midnight, November 23.

Tuesday, October 21, 2014

The T21 Blog Hop - October 2014

As we find ourselves in October once again, I must admit, I'm feeling a little more optimistic than last year.

October, traditionally in the USA, is Down Syndrome Awareness Month.

Last year at this time, I (and a few more like me) were met with a certain degree of resistance regarding the gulf between awareness campaigns and the actual creation of a climate of acceptance.  I personally was mocked, received hate mail, was party to some online bullying... and I didn't get it half as bad as some of my fellow bloggers get on a regular basis.

With that, and my ongoing health concerns, you can imagine why I have remained reletively silent lately.

However, hope does spring eternal.  In my silence, I have been able to listen... and have been delighted by other voices taking up the call.  Acceptance, not awareness.  Meaningful inclusion.  Equality.  Justice.  These words have been a battle cry, and will be again.

For now, I will re-share a few of my older pieces for this month;  words that I solidly stood by in the past and continue to do so now.  Not surprisingly, the theme for this month's Blog Hop will be acceptance, of not only Down syndrome and other developmental delays/intellectual disabilities, but of disability in general.  I will also invite colleagues, friends and bloggers from all over the world of disability to participate; there is so much we can learn from each other.  There is so much more that we all have in common.

Please join us for the next three days and read some wonderful writing about acceptance, meaningful inclusion, equality and justice.  Perhaps together we can make a larger impact.  Perhaps we can find another few voices along the way.



Thursday, August 21, 2014

The T21 Blog Hop - August 2014

August, as they say, has been interesting thus far.

So much has been happening... It has gotten me thinking of Acceptance vs Awareness again, the question of what is normal and not, what is health and what is considered illness and when the change from one to another actually happens, if at all.

I guess what really hit it home today is the following quote from the agency who is monitoring and aiding in my son's development:

"-Wyatt has Down's Syndrome [sic].
 -Wyatt is Twin 'A'.  Twin 'B' is a healthy female."

Ow.

With this in mind, it's time for a little more acceptance, methinks.  Time for a little more slice of life, time for a little more "... is natural".  Down syndrome is a part of life.  Autism is a part of life. Disability, in any shape or form, is natural and not sickness.  They are not to be feared, extinguished, beaten.  They do not need a cure.

I'm going to extend it a little further this time too.  Depression is natural, as is anxiety and many other things.  They happen, they exist.  They can be quite disabling.  They are not to be feared either. 

I really look forward to a time when this isn't a discussion. 

Grab some ice for a nice cold drink, and read some great Acceptance blogging.



Monday, July 21, 2014

The T21 Blog Hop - July 2014

Its that time again...

Once again, July is an "open theme" month.  There are so many really good campaigns going on right now...

Linky will open July 21st at 12:00 AM EST and close July 24th at 12:00 AM EST, allowing folks three days to submit their entries for this month's showcase.

Add your post(s) (old or new) to the linky below by clicking the link and following the instructions. If you need further instruction for adding a reciprocal link to your blog post, follow this link.

Saturday, June 21, 2014

The T21 Blog Hop - June 2014

It is with great delight that I greet summer today.

Most people at this time of year kick back, take vacation and generally take things a little easier.   Or if they  choose, use longer days and sultry nights as an excuse to raise a little hell. 

Unfortunately summertime, with all it's activities and sunshine and whatnot, is not a respite from discrimination. There are a lot of really good active advocacy campaigns going on at the moment; in lieu of a specific theme, I encourage all to post.

For June, let's kick off the summer by making a little noise.

Add your post(s) to the linky below by clicking the link and following the instructions. If you need further instruction for adding a reciprocal link to your blog post, follow this link.

Wednesday, May 21, 2014

The T-21 Blog Hop - May 2014 - Advocacy Rewind

I'm not sure what's happened to May, but here we are at the 21st again.

This month, I'm going to try something a little different.  I know a lot of bloggers that consistently put out some great advocacy pieces, but there seems to always be that ONE article.  There is always that one piece that you were particularly proud of, that maybe nailed your point or defined what your blog was all about. Or maybe you felt it was a little better written than some of the others.

For May, I want to see that one (or two, or three) advocacy post(s) that you are fond of for one reason or another.  We all do some really good work... I think it's time we stood back and took stock of just how good some of it is.

Add your post(s) to the linky below by clicking the link and following the instructions.  If you need further instruction for adding a reciprocal link to your blog post, follow this link.

Set the wayback machine and let's go!


Monday, April 21, 2014

Welcome to the T-21 Blog Hop - April 2014

When I resurrected the T-21 Blog Hop last October, I did so with the idea that regardless of whatever month or theme I had chosen for a particular 'hop, it would always be open for pure advocacy posts.  That has not, nor will it ever, change.

This month, there is a lot going on in the various disability communities.  Instead of picking a topic or jumping on a popular organization's bandwagon, I'm going to let the posts and their authors speak for themselves. 

If I had to pick a topic to go with April, I'd say "Acceptance" or "Advocacy".  Both of those begin with A, right?  However, truth be told, those should be the themes for every month, as they are the drum beat that spurs folks like the ones you are about to read, on.

Shower us with Acceptance and Advocacy posts.  It is April after all...


Friday, March 21, 2014

Welcome to the T-21 Blog Hop - March 2014: World Down Syndrome Day

Today is World Down Syndrome Day, a day that we celebrate those with an extra copy of the 21st chromosome.

Our festivities however, always seemed to be tinged with a note of sadness, as those with Down syndrome and other intellectual disabilities continue to be discriminated against in all aspects of life.  From our everyday common language, to our medical systems, to our laws, to our education systems, we continue to deem those that are a little different as defective, inferior, not worthy.

Life, not worthy, of life.  Although it has been many years since Aktion T4, these eugenics principles still linger.

Of the many little educational factoids that you may read today about Down syndrome (including this list here), somewhere between 5 to 10 percent of those with an extra 21st chromosome are also diagnosed with an Autism spectrum disorder.  The intersectionality between these two communities, and in fact many more as well, is more substantial than you might think.

Join us today for the World Down Syndrome Day edition of the T21 Blog Hop.  Instead of the usual three days that it is open (representing the three copies of Trisomy 21), it will be extended to a full seven days.  Advocacy posts are welcome from all areas of neurodiversity:  whether showing your T21 pride, advocating for a better world for those with developmental delays or asking for once and for all for the world to #stopcombatingme, add your posts for seven days of blogging excellence.




Friday, February 21, 2014

The T-21 Blog Hop, February 2014 -- Ableist Language

I wish I could say that I had to think really hard about this month's topic.

Even before my friend Michael Scott Monje Jr. suggested this topic, I had run into numerous examples lately of ableist language being used--and even defended--by advocates and activists in other communities. 

I cannot say this enough:  whether intentional or not, whether a word was "once accepted" or not, whether you know/knew/have someone in your life that the slur may pertain to, it does not matter.  A slur is a slur, no matter how you try and dress it up afterwards. 

Thanks to the tireless efforts of many, the R word (or "retarded") has now become a readily recognized example of such a word.  However, there are many more.  Search your own vocabulary and explore the etymology for many of the words you use to describe "ridiculous" or "not thought out".  Words like stupid, imbecile, moron, idiot, cretin... all have their roots in ableist oppressive language.  To be specific:  if you are describing an object, person or situation in your life with a term that equates to the old eugenics term 'mentally deficient', you are using ableist language and in turn denigrating those with actual intellectual disabilities/developmental delays.  When you are describing an idea as 'blind' or 'dumb' or an economy as 'crippling', you are doing the same thing to those with other disabilities.

When it doubt, say something else.  On top of it all, it's hard to argue that one should stop demeaning one group of people when you are in the middle of dehumanizing another.

It's bad enough that folks have to put up with this kind of thing from the general public and celebrities (I'm looking at you Jerry Seinfeld), but to hear it from other advocacy communities, given how intersected we really all are... well, it's really disheartening, frankly. 

Remember it's not about you.  It's about the people who, in times past, were labelled with these words and outcast, brutalized and often killed outright.

This month, I encourage disability advocates to post their pieces discussing ableist language.  Be they old or new, I want to show how diverse the disability community really is and how so many different people are affected. 

If you need more information about the T-21 Blog Hop, you can click here.

For more detailed instructions on how to add the script to your post, click here.

[Update Feb 22:  The thumbnails may not be working below due to a server switch by LinkyTools.  The script is still able to accept new posts and I am told the images will be back as soon as possible.  To quote Clerks:  "I assure you we're open!"]

Tuesday, January 21, 2014

Welcome to The T-21 Blog Hop! January 2014 - Architects of Change

Today is the first T-21 Blog Hop for 2014.

As I was looking over Hops of years past, I was considering where to go next.  That got me thinking...

So much of what is perpetuated about disability, both inside and outside various communities continues to be based on supposition, prejudice and ultimately, stereotypes. As it turns out, we are still not "all in this together". From the grief rhetoric to inspiration porn to privilege to (not so) quietly painting those that you claim to represent as burdens, forever children or worse, these forms of ableism, are just as rampant as any other.

They all hurt; and they will continue to do so until change comes about.

Speak up about it? You must be angry/mentally ill/bitter/not accepting of "your lot in life" (whatever that means) or even a bully.  I get a lot of mail or comments like this;  many outspoken advocates do. I am in some very good company with that one.

Instead of allowing the message to be diluted, instead of taking the easy road and pretending that certain things just don't exist or coating them in fairy dust, I'm going to embrace the angry.  2014, for me, is going to be louder.  Possibly both leaner and meaner, but definitely louder.  With that in mind, this month's blog hop theme will reflect social justice. It will be for calling out, for demanding, for saying "we are not going to be silent". Call it solidarity for the angry. Call it whatever you wish.  We'll call it "architects of change".

Acceptance, fairness, equality: these things are not to be taken lightly. We are not all on the same journey. Some of us have taken different roads; it is at our common intersections that we will now meet.

For three days, add your posts, both old and new. Let's set the tone for a year of change.


Saturday, December 21, 2013

The T-21 Blog Hop - December 2013

Here we are, the last blog hop of 2013!  I look forward to many more in 2014!

Although the name is reflective of Down syndrome, this hop is open to all blogs in the disability and special needs communities.  Self-advocates, allies, parent advocates, all are welcome.  Posts can be old or new, as long as they meet the requirements set out at the time.  Posts should be about advocacy or activism


If you need more information about the T-21 Blog Hop, you can click here.

For more detailed instructions on how to add the script to your post, click here.

Thursday, November 21, 2013

The T-21 Blog Hop - November 2013

It's that time again...

As I said last month, it was time to bring back these monthly blog hops, to showcase some of the excellent writing taking place in the name of disability advocacy.

November 2013 is the very first "Autistic History Month" and is our theme here now.  However, posts about other disabilities and advocacy are always welcome. 

The script is live now and will continue to be open for the next three days.  It and all previous hops will continue to be archived here.  If you need further instructions, you can follow this link.

Submit your posts and read some excellent blogs.


These posts brought to you by:
 
Add your post now!

Monday, October 21, 2013

Welcome (Back) to the T-21 Blog Hop!

[Video:  Opening credits and theme song from "Welcome Back Kotter"]

Somewhere around December of last year I shelved the T-21 Blog Hop.  I did this partially out of lack of interest and partially out of the time involved each month. 

However, after much deliberation [read:  drank some wine and thought eh, why not?], it's back bay-bee! 

(For instructions and more information, click this link)

As it is Down syndrome Awareness Acceptance Month in the United States, I thought I would roll this one out with a theme.  Not surprisingly, I have chosen Acceptance.

What is acceptance to you?  What do disability advocates have to do to get there?  What does society have to do to get there?  How do things like ableism, inclusion, activism, education, and intersectionality fit in?  How does all of this relate to you in particular? 

We will also continue to welcome posts about disability advocacy.  

You can only add a post once to the linky, but you are welcome to add more than one post if you choose.

Add your posts to the "linky" below and read some excellent posts from self-advocates and allies from around the globe.

These posts brought to you by:
Add your post now!


Friday, December 21, 2012

Share the Light

If you're reading this, it means the world hasn't ended.

(Not so) Whew.

You wouldn't know that from around here as it seems this house has already been hit by the ten plagues.  I'm hoping that we have seen the end of it as we've pretty much cleaned out all the baby Tylenol in our area.  Twice.

In my last sick post, Boogie Wonderland, I talked about battling the Martian Death cough.  We did eventually get over that and my post-bronchitis cough was receding.  We even got out of the house twice:  the first outing was with ICDSP and the second at a friends house where we met their newest arrival.  We had to leave the last one early as Wyatt spiked a fever and started sporting the green walrus look again.

By the next night, in the middle of my shift, I started to feel crappy again.  It started with a few sneezes and by 0730 I was a sore, choking, feverish mess. I had managed to acquire, after being off antibiotics for only a few days, a nasty sinus, throat and ear infection.  So nasty that even a gram of acetaminophen only took the edge off my fever/pain. The doc prescribed some serious antibiotics this time;  they are of a particularly nasty variety with a list of side effects as long as your arm.  I was also less than enthusiastic [read:  beside myself] when I went back the clinic with the rest of the family the very next day.

Sean and Wyatt went on (different) antibiotics as well; poor Wy got an added insult with a separate eye ointment .  We were a coughing, hacking sputtering lot with this bug, dubbed Boogie Wonderland 2:  Expectorate Boogaloo.  After a week of Tylenol, meds and narcoleptic fits (yes, really), I'm happy to say that we are almost back to health.

Through a series of tragic events that also happened within this time (and shall not be recaptured here), it became apparent to me that despite everything, I have a lot to be grateful for.   Yes, we were all very ill,  Wyatt and I especially.  However, as I initially grumbled to myself while picking up yet another prescription on Friday afternoon, it occurred to me that I should be grateful for many things.  I was thankful that I was in the position to afford my prescriptions and even more so for having a job with benefits that covered all of them completely.  I was grateful that my son did not become more ill, as those with T-21 tend to... I was appreciative of the fact that all my children were very much alive and snuggled in my arms at various points throughout that evening.  The last one especially.

Ahh, the kids... so full of light and magic as of late.  All are quickly developing into the people that they are going to be.  Zoe's speech is improving daily;  she can count to ten and you can understand more and more every day.  Wyatt is working on standing;  my little boy stood with his worker the other day, holding onto the table and otherwise unsupported for quite some time.  He has popped a few more teeth this week which opens up a whole new world of chewing and dietary additions.  My eldest, Quinn, is continuing to demonstrate a dazzling intellect, a pointed wit and a deep appreciation for art, music and the creative process.  And science.  Don't forget that.  He only mentions it eleventy-bazillion times a day.

I had started my Inspiration post before I was sick and it lay untouched and unfinished for days.  I was both physically sick and heartsick.  During that time, it felt like the sun had been taken out of the sky.  That hope had been lost.  Although we were all still throwing apocalypse jokes around, it seemed that it really was the end of civilization as we know it.  In a whirlwind of violence and hatred and spin and pain and anger... there seemed to be only darkness.  And fear.  

There was also my gratitude, lets not forget that.

This time of year has been special since time immemorial.  People have lights their houses, they light a menorah, a tree, candles, even a Yule log.  We do this, fundamentally to banish the dark.  In (one of) my personal traditions, on the solstice we welcome back the sun.  As of today, the days are officially getting longer.  Spring is coming.  Hope is reborn.

With everything seemingly gone to hell in a handbasket, I needed a little of that light early.  I had been inspired by a wonderful group of parents (and their equally wonderful children) the week before.  Armed with this, and knowing that so many were feeling some of the same things I were, I encouraged folks to bring some light, some hope, some good tidings to my Facebook Page.  I started an album for pictures and for lack of a better title called it "Share the Light".  As people shared their interpretation of "light" (a candle, an angel, a sunrise/sunset, an inspirational saying, the smile on a child's face), I shared them back.  A few of my friends picked up on it and started filling their newsfeeds, not with tragedy and spin and speculation and anger, but with light.  And love.  And hope.

I went to bed that night feeling much better.  I know more than few more people felt that way too.

The past (almost) two years have taught me a lot about human nature, especially my own and my place in a vast thundering herd of humanity.  We are all prone to sadness and in these times of uncertainty and loss, well, it's easy to be overcome by darkness when fed only fear and ignorance.

"Share the light" is a pretty good metaphor for a lot of things.  The seeking out and sharing up to date, factual information. The encouragement of ideas and creativity.  The lifting up of anothers spirits, for no other reason than it's the right thing to do.  To be kind.  To provide warmth and shelter and sustenance to those that have not, whether that be physically or spiritually.  I'm not perfect and neither are any of you...  But, there has to be something to all of this if most of the world's major religions are based on it.

I am grateful for what I have.  My job, my family, my friends, my abilities, my me-ness. I am thankful for those in my life, for good or bad, for it is through others that we learn. With this, I think I will be leaving this particular album up and adding to it now and again.  We all need light, especially these days.  Today, since the world didn't end or anything, why don't you share a little?  Do something nice, do something positive.  Give a little of the flame that is you;  you don't know how far it will go or how much warmth it might mean to someone.

Merry Christmas, Happy Hanukkah, Joyous Kwanzaa, Blessed Yule.  Happy Holidays to you and yours.  May your home be filled with love and laughter. 

Share the Light.

My thanks to my good friend S., who shared this poignant quote from Albert Schweitzer with me,
in a moment when I truly needed it.  xox


Join us one last time for the T-21 Blog hop.  Due to lack of interest I will be probably discontinuing this event in the new year.  Let me know your thoughts.

Join Down Wit Dat on the 21st of Every Month!

Tuesday, October 23, 2012

A Brief History of Down syndrome, Part 5: From Education to Eugenics

The training schools for the developmentally delayed in the middle 1800's were an instant success;  although they did not offer a cure, they did show improvements in behaviour, physical prowress and social interactions.  Many students were able to develop skills that would ensure a successful return to their loved ones.

Sadly, a post-Civil war poor economy did not allow for many employment opportunities for the developmentally disabled in America, no matter how well trained.  Jobs were scarce and there were many new immigrants who were willing to work for low wages.  People with disabilities were looked at as burdens and were counted (once again) amongst criminals, prostitutes and vagrants in the census reports. 

Not surprisingly, there was a simultaneous increase in the demand for training schools;  many of the existing schools expanded and initially served a broader disabled community.  However, as time went on, the schools quickly became asylums, providing only rudimentary care for their 'inmates'.  By 1875, many US states had started construction on institutions for the developmentally disabled.  The leaders of these new institutions were now doctors;  1876 saw the establishment of the Association of Medical Officers of the American Institutions for Idiotic and Feeble-Minded Persons (who would later become the American Association for Mental Retardation, now the American Association of Intellectual and Developmental Disabilities or AAIDD).  One of the primary purposes of this organization is taken from Article II of their constitution:
"The object of the Association shall be the discussion of all questions relating to the causes, conditions, and statistics of idiocy, and the management, training, and education of idiots and feeble-minded persons; it will also lend its influence to the establishment and fostering of institutions for this purpose." 
How Boys are Taught Simple Manual Labor, Massachusetts School
for the Feeble-Minded, William A. Webster, circa 1903.
Photo courtesy of the Harvard Art Museums/Fogg Museum
The institutions were now medically based,the differently abled now "sick" and in need of treatment (and surely, cure).  The superintendents believed that each disability should be grouped accordingly, creating a colony system within the institution itself.  Examples of such are an "epileptic colony", a building for "low-grades" or lower functioning individuals and a "girls cottage".   The focus had shifted from educating young people to return to the community to housing a large number of individuals of all ages and abilities. To stay financially solvent, these institutions began to train some of the higher functioning inmates to work in the asylum.  They provided cheap (slave) labour as the institutions became self sufficient, often running their own farms and even power plants.  Often located in very rural settings, the inmates were essentially cut off from the rest of society.  Cheap farm land and abandoned farms in depressed rural areas was purchased  allowing for the creation of "farm colonies" where higher functioning "patients" provided hard physical labour, without pay, to produce enough food for one of the large institutions.  These farms also relieved some of the overcrowding of the main institution.  Care was custodial at best, with the idea that safety and security was all that could be expected. 

Both Seguin and Howe, two physicians, educators and advocates for the disabled, foresaw the new direction that the schools were heading to.  Instead of presenting the keynote address for a groundbreaking for a new institution in New York, Howe begged them not to open it instead.  Regardless, the populations in the institutions continued to rise.  There were, on average, 250 people per institution in 1890;  that number had doubled by 1905.

Walter E. Fernald, the then president of the American Association on Mental Deficiency, described the institutions as an economic solution to the disabled.  In his words, "each hundred dollars invested [in institutions] now saves a thousand [dollars] in the next generation.".  Money allocated to the poorhouses and almshouses by the state was already being redirected to the large institutions as well.  By the close of the century, the annual cost of housing a person in such a place ranged from $150 to $250 USD.  In a generation, the public view towards the differently abled, especially the developmentally delayed, had gone from one of compassion and eduction to fear and segregation.  By 1923 there were over 80 "schools", "farms", "hospitals", "institutes" and "academies" for the disabled.   With it's inmates no longer welcome in the outside world, these asylums could now say that they were relieving society of a great burden. 


Protect Us from the Feeble

As the institutions grew and conditions continued to worsen, the public perception of the disabled and "feeble-minded" continued to decline as well.  Such "illnesses" were considered to be moral failings of the person or their parents.

Immigration to North America was at an all time high and by 1900, one in seven Americans was born elsewhere.  Fear and suspicion of both immigrants and disabled persons was also growing exponentially;  this was only augmented by government actions that segregated and excluded these new Americans, which in turn only reinforced and systematized prejudices.  The US Public Health Service classified the following together as one group: "criminals, defectives and delinquents". With this in mind, the Public Health Service, administered the new Binel IQ test to immigrants at Ellis Island.  Devised originally by the French psychologist (on behest of his government) Alfred Binet,  it was created to quickly identify developmentally delayed children for placement in 'special education'.  Even Binet himself felt that case studies were more appropriate, however such assessments were lengthy and costly, especially on the larger numbers of people seeking entrance into such facilities.  However, there were three codicils to his test:  one, the scores are not to be considered permanent. Two, the scale was to be a rough guide for the identification and aid of developmentally delayed children and, three a low score did not determine an innate incapability on the part of the child.  However, these tenets were easily brushed aside and from the testing at Ellis Island, it was determined that "79% of the Italians, 80% of the Hungarians, 83% of the Jews, and 87% of the Russians are feeble-minded.", a conclusion which now, scientifically, legitimized the marginalization and prejudice.

As time went on, the view of the institutions shifted further from education to protection;  once again the developmentally and physically disabled had become demonized and the public now needed protection.

The Rise of Eugenics

Much like in centuries past, the uncertainty of the economy and world affairs provided a fertile ground for the reappearance of ideas now known as Social Darwinism and Eugenics.  The term "Eugenics" was coined in 1883 in Inquiries into Human Faculty and Its Development, a book written by Sir Francis Galton, cousin to Charles Darwin.  The Eugenics movement advocated for the improvement of society through the elimination of certain traits.

Misinformation and propaganda began to circulate, citing supposed immorality and the danger to the future of humankind.   Feeble mindedness needed to be controlled, if not cured.  The term moral imbecility also included such things as juvenile delinquency, behaviour problems and epilepsy and was regarded as a main cause of societal ills including poverty, alcoholism, prostitution, violence and crime in general. Often, those who committed crimes were portrayed in the newspapers in such a way to suggest developmental delay.
 
Henry Goddard, a psychiatrist at The Vineland Training School, translated the Binet IQ test into English and made a few adjustments;  he developed a category of developmental delay known as "moron", which became synonymous with 'moral imbecile' and reinforced the notion that feeble mindedness and therefore delinquency, was hereditary.

John Harvey Kellogg, the inventor of corn flakes, ran a holistic sanatorium in Battle Creek Michigan.  In 1906, he created the Race Betterment Foundation, which would hold Eugenics conferences at the sanitarium in the years to come (1914, 1915 and 1928).

The year 1909 saw the publication of The Eugenics Review, the journal of the Eugenics Education Society in Britain. Galton, who was the honorary president, wrote the foreword.

In his 1910 book, Eugenics, The Science of Human Improvement by Better Breeding, Charles Davenport speaks of the formation of a 'Committee on Eugenics' from the American Breeder's Society including such famous names as himself, David Starr Jordan, botanist Luther BurbankAlexander Graham Bell, zoologist V. L. Kellogg, Swiss psychiatrist (and future president of the American Psychiatric Association) Adolf Meyer, naturalist J. Arthur Thomson, W. E. Castle, Charles HendersonAleš Hrdlička, Herbert J. Webber, C. E. Woodruff,  and Frederick A. Woods (who coined the phrase Historiometry).  According to Davenport, the "various duties of this Committee may be summed up in the three words:  investigation, education and legislation".  On the surface, this sounds very philanthropic, however, Davenport later continues on with the following:

"...This three or four percent of our population is a fearful drag on our civilization.  Shall we as an intelligent people, proud of our control of nature in other respects, do nothing but vote more taxes or be satisfied with the great gifts and bequests that philanthropists have made for the support of the delinquent, defective and dependent classes?  Shall we not rather take the steps that scientific study dictates as necessary and dry up the springs that feed the torrent of defective and degenerate protoplasm?"

"...If only one-half of one percent of the 30 million dollars annually spent on hospitals, 20 millions on insane asylums, 20 millions for almshouses, 13 millions on prisons, and 5 millions on the feeble minded, deaf and blind were spent on the study of the bad germ-plasm that makes necessary the annual expenditure of nearly 100 millions in the care of its produce we might hope to learn just how it is being reproduced and the best way to diminish its further spread."


A "sub-committee on Feeble-Mindedness" was also created;  it was "under the chairmanship of Dr. A. F. Rogers, Superintendent of the Minnesota School for Feeble Minded and Colony of Epileptics, and with Dr. H. H. Goddard, Director of the Department of Psychological Research at the New Jersey Training School for Feeble-Minded Boys and Girls."  Similar committees were created for other "problems", including "Insanity" (Chaired by Dr. Adolf Meyer), eye defects, deafness, crippled limbs, disease, musculature, etc.  The 'main committee' was given the task of obtaining records from American families regarding "the inheritance of characteristics of health, ability and temperament".  At the time of publication, only 300 of the 5000 family records forms had been returned to be studied, so it was suggested that "data of this sort might be collected by the national Bureau of Census...".   

Davenport, along with Harry Laughlin and financial support from Mrs. E. H. Harriman (the widow of the railroad baron), created the Eugenics Record Office in 1910.

Kallikaks, Morons and the Justification of Sterilization

The lineages of "Martin Kallikak"
Goddard administered his modified Binet test again, this time to 1.75 million army recruits in 1917 and found that 40% of the white, male population was feeble minded.  By 1912, he had written The Kallikak Family: A Study in the Heredity of Feeble-Mindedness, a supposed genealogical account (and moral tale) of a patient in The Vineland Training School.  Named Deborah "Kallikak" (a name made up of the Greek word kallos or beautiful and kakos meaning bad)Goddard maintained that Deborah's great-great-grandfather was a soldier in the Revolutionary war who "dallied with a feeble minded bar maid".  Although he was to go on and marry a proper Quaker wife and father healthy upstanding citizens, his earlier indiscretion fathered another line.  That resulting lineage, Goddard maintained, not only produced Deborah, whom he described as:
"...a typical illustration of the mentality of a high-grade feeble-minded person, the moron, the delinquent, the kind of girl or woman who fills our reformatories.  They are wayward, they get in all sorts of troubles and difficulties, sexually and otherwise, and yet we have been accustomed to account for their defects on the basis of viciousness, environment or ignorance."

The caption reads: "Great-grandson of
"Daddy" Kallikak.  This boy is an imbecile
of the Mongolian type"
...but also a variety of 'degenerate' members of the family, including those felt to be feeble-minded, sexually immoral, alcoholic, insane, syphilitic, criminals, deaf, tuberculous or simply died in infancy. Many case studies of are provided with accompanying photographs, which, even to the most untrained eye of today, appear to be poorly altered to appear more monstrous. However, at the time, this publication did what it was supposed to do; provide 'proof' that feeble mindedness and therefore, all of society's problems, were hereditary.   

"There are Kallikak families all about us. They are multiplying at twice the rate of the general population, and not until we recognize this fact, and work on this basis, will we begin to solve [our] social problems."

 It also validated the use of segregation in an institutional setting and "...sterilization may be accepted as a makeshift, as a help to solve this problem because the conditions have become so intolerable." Clearly, sterilization was the solution for the time being, until something more permanent could be devised.

The first International Congress of Eugenics was held in London in 1912 (they would be held again in 1921 and 1932) .  Attendees of note were Winston Churchill, then the First Lord of the British Admiralty, Chief Justice Lord Alverstone, Lord Balfour and then ambassadors of France, Greece and Norway.  In the US, the Galton Society was created in 1918;  it further popularized eugenic theories through its newsletter the Eugenical News.  Contributors included racist authors Madison Grant and Lothrop Stoddard.

By 1915, many of America's prominent universities were offering courses on eugenics:  Brown, Harvard, Columbia and Cornell are among those that taught these theories.  This is not surprising given the academic backing of eugenics from such persons as psychologists Edward Thorndike and Leta Hollingworth, as well as psychometricians Carl Brigham and Robert Yerkes.  Goddard took his presentation on the road and using lantern slides, warned the masses of the "rising tide of feeble mindedness".

A 1917 movie, entitled "The Black Stork"  told the fictional story of a couple that were "ill matched" and as a result, gave birth to a disabled baby.  The baby in the movie was "mercifully killed" by starvation by eugenicist Harry J Haiselden, who not only starred in the movie as himself, was in real life was a prominent Chicago physician who refused to give life saving care to "defective" babies.  Not only were the dying infants displayed to journalists, but he also documented them publicly in the Hearst Newspapers.

Photo from the North Carolina State Board of
Charities and Public Welfare Biennial Report
of the State Board of Charities and Public Welfare,
December 1, 1920 to June 30, 1922
The American Eugenics Society was formed after the second Intentional Congress and formed committees to better aid in popularizing their theories.  These committees included "Co-operation with Clergymen", "Sermon Contests", "Crime Prevention", "Selective Immigration" and "Formal Education".  They also sponsored "Fitter Families Contests" and Eugenics information booths at various state fairs.  An example of this is a display in Philadelphia in 1926 that featured flashing lights to illustrate the dire consequences of uncontrolled inferior procreation and the phrase "...some Americans are born to be a burden on the rest"The National Education Association's Committee on Racial Well Being also sponsored programs to help college professors include eugenic doctrine in their classes throughout the 1920's.

By 1924, the US Congress passed the Immigration Restriction Act, specifically targeting those from Europe and Eastern Europe, the majority of which had been labeled "feeble minded" a decade before.  Those who were differently abled with mild to moderate disabilities were now considered morons and part of the "moral menace".  As the institutions were overflowing, the superintendents, many of which have been named here as Eugenicists (and promoted the idea of the degenerate moron), 'paroled' the higher functioning patients after sterilizing them.  It did not take long however, for lower functioning individuals to also be sterilized, especially those who displayed habits considered to be obscene.  The men were forced to undergo vasectomies and the females underwent tubal ligation. 

Photo courtesy of the DNA Learning Center,
Cold Spring Harbour Laboratory
One contested sterilization case made it to the US Supreme Court in 1927.  In Buck v. Bell, Carrie Buck was an young woman that had been declared feeble minded and scheduled for sterilization.  A family tree, brought forth during the trial showed that she was the child of a feeble minded woman and that her then infant daughter was the same.  The Chief Justice, the iconic Oliver Wendell Holmes Jr., stated that:
“It is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.  The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.”

Carrie was sterilized and it was found later that she was, in fact, of normal intelligence, as was her daughter who went on to win awards in school.  The entire family tree had been fabricated and her entrance into the institution was surmised to be a cover up of her rape at the hands of a foster-cousin, from which her daughter had originated.  Carrie went on to be paroled from the institution, got married and eventually died in 1983 in a nursing home.  She was buried next to her daughter Vivian, who had been adopted by Carrie's former foster parents (due to her supposed lack of competence) and died at eight years of age.  Buck v. Bell has never been overturned.

By 1928, Eugenics was taught in over 376 courses in the US, which covered approximately 20,000 students.  High school science textbooks between 1914 and 1948 presented Eugenics as fact, creating two entire generations that believed in segregation, restriction of immigration and sterilization of the "unfit".  Compulsory sterilizations of the developmentally and physically disabled were performed worldwide, including in Canada, Sweden, Switzerland, Denmark, Norway, Finland, Estonia, Iceland, Panama and the United Kingdom. The Eugenics movement eventually lost scientific credibility, but not before hundreds of thousands of developmentally and physically people had been sterilized in the name of social purity.


[Next time: Extermination]



Buck v. Bell, 274 U.S. 200 (1927) <caselaw.lp.findlaw.com>

Burr Johnson, Kate. North Carolina State Board of Charities and Public Welfare Biennial Report of the State Board of Charities and Public Welfare, December 1, 1920 to June 30, 1922. Raleigh: North Carolina State Board of Charities and Public Welfare, 1922. University of North Carolina at Chapel Hill. The University Library. Web. <http://docsouth.unc.edu/>.

Davenport, C. B. Eugenics, The Science of Human Improvement by Better Breeding. New York: Henry Holt and, 1910. Print.

Goddard, Henery Herbert, The Kallikak Family: A Study of the Heredity of Feeble-Mindedness, (2009). College of Law Faculty Publications. http://digitalarchive.gsu.edu/col_facpub/7

Paralells in Time; A History of Developmental Disabilities, The Minnesota Governor's Council on Developmental Disabilities, 2012.

Proceedings of the Association of Medical Officers of American Institutions for Idiotic and Feebleminded Persons. Vol. 1,2. Philadelphia: J. B. Lippincott &, 1877. Print.

Selden, Steve. "Social Origins of Eugenics." Social Origins of Eugenics. University of Maryland, n.d. Web. <http://www.eugenicsarchive.org/html/eugenics/essay6text.html>.


A Brief History of Down Syndrome: Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7

Monday, October 22, 2012

Medical Monday - The Brain and Down syndrome: Part 2: The Brain and Trisomy 21 (31 for 21, Day 22)

As we explored last week, the brain is a complex organ with highly specialized areas that control almost all of the body's functions (both conscious and unconscious).  This week I hope to shed somelight on the differences between a 'typical' brain and one with Trisomy 21.

Anatomical Differences

Lateral surface of left cerebral hemisphere
of the 'typical' brain
Through autopsy, MRI imaging and related studies, many anatomical differences have been noted in the brain with Trisomy 21. There is:
  • Statistically a brain that is 18% smaller by volume 
  • A smaller than average occipital lobe and brain stem
  • Alterations in the layers of the cortex (cortical lamination)
  • A simplified appearance to the sulci (the furrows or wrinkles in the surface of the brain.  The inside of the furrow is known as a sulcus, while the crest is known as a gyrus)
  • A smaller cerebellum, which could account for the hypotonia, motor-coordination, articulation, fluency, syntactic, language and cognitive issues with Down syndrome.
  • Smaller frontal lobes (although in proportion to the rest of the smaller sized brain) could account for cognitive deficits, executive dysfunction, inattention, tendency towards perseveration.
  • Smaller temporal lobes than the average brain, although larger comparatively when size corrected for the smaller overall size of the brain with Down syndrome.
  • Larger white matter volumes within the temporal lobe which could attribute to cognitive dysfunction
  • Adults with DS have been found to have a larger parahippocampal gyrus (the fold of the cerebral cortex that lies over the hippocampus that is normally composed mainly of grey matter). One study found an inverse relationship between IQ and parahippocampal gyrus size. 
  • Smaller hippocampus volumes have been found in adults with DS which may contribute to memory and language deficits
  • A brain with DS, noting the 'boxy' shape and shortened
    superior temporal gyrus (Image courtesy of
    Virginia Commonwealth University's Department of Pathology)
  •  A comparatively smaller superior temporal gyrus which could significantly contribute to language deficits as it is the location of both the primary auditory cortex (region responsible for sound) and Wernicke's Area (region responsible for speech and language recognition)
  • More grey matter in the parietal lobe.  This could account for the strength of visuospacial processing and visuospacial short term memory.
There is also a general larger volume of grey matter in the subcortical region. There are several theories surrounding this. One, it could suggest a different rate in development for the cortical and subcortical areas. For example, no abnormalities are seen in fetal brains with DS until the third trimester; by then the majority of the basal ganglia are formed. The cerebral cortex, however, continues to grow and develop beyond this time, which suggests that the subcortical regions are mainly unaffected by the onset of the abnormalities. Another theory is that programmed cell death (apoptosis) is not effective, causing a large number of basal ganglia to continue to operate long after they become dysfunctional. Some children with DS also have vascular dysplasias and focal calcification of basal ganglia

Histological Differences

There are also differences in the cells themselves in the Trisomy 21 brain:
  • Neurons have a reduced number of dendrites, less synapses an are often clustered irregularly. Early in development, a infant with DS has a rapidly growing dendritic tree, which connects neurons together. Within the first year however, this growth slows.
  • Oligodendrocytes, a type of glial cell, create the mylen sheaths which insulate the axons of a nerve cell. There is some dysfunction with these cells in Down syndrome which is seen as delayed mylenation in the frontal and temporal lobes
  • There are more microglial cells found in Trisomy 21
  • There can be a presence of nerve cell heterotopias in the white layers of the cerebellum (which could indicate some disturbance of cell migration in the embryo)
  • A decreased amount of granular cells throughout the cerebral cortex
  • A decreased amount of neurons in the occipital cortex and hypothalamus
  • Larger amount of astrocytes in the temporal lobe

Other theories:


It is possible that over expression of the T21 gene affects apoptosis or programmed cell death. This could potentially account for lower numbers of neurons in specific areas of the brain and the prevalence of leukemia in the DS population. Also, compounds known as Reactive Oxidant Species could contribute to neurodegeneration by oxidation.

Other factors to consider:


Beta-amyloid expression in children with Down syndrome is no different than in normal children. However, it disappears after age two then reappears in adulthood.

The accumulation of beta amyloid deposits, senile plaques and neurofibrillary tangles starts at approximately age 40 which may represent or lead to an Alzheimer's like neurodegeneration


[Next week: Down syndrome, Alzheimer's and a Very Special Mouse]




Becker, L., T. Mito, S. Takashima, and K. Onodera. "Growth and Development of the Brain in Down Syndrome." Progress in Clinical and Biological Research, 373 (1991): 133-52. Web.

Lubec, G., and E. Engidawork. "The Brain in Down Syndrome (TRISOMY 21)." The Journal of Neurology 249.10 (2002): 1347-356. Web.

Pinter, Joseph D., Stephan Eliez, J. Eric Schmitt, George T. Capone, and Allan E. Reiss. "Neuroanatomy of Down’s Syndrome: A High-Resolution MRI Study." The American Journal of Psychiatry 158 (2001): 1659-665.


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Sunday, October 21, 2012

He Ain't Heavy... (31 for 21, Day 21)

When I was planning out my writing schedule for the 31 for 21, I asked the help of a few friends and family.  I badgered inquired of them what they would like to see, or what they thought would make a good entry.  I got a few really nice suggestions from my group, but there was one that stuck with me.  It was from one of my uniformed friends at work;  she suggested that I write about how Wyatt's Down syndrome is really not that much of a problem and what a wonderful kid he was.

I scratched my head a bit on that one, simply because I thought "don't I do that all the time?"   I think I've mentioned a few times what a little darling he is and how any "extra needs" are peanuts compared to his twin sister who is very much in your face all the time.  I gave it a little more thought and realized what she was getting at:  to show parents that it is not a problem.  Down syndrome is not the end of the world.  It is not a death sentence, literally or figuratively.  I do a little of that here and there too, however it is interspersed amongst stories of hours of therapy, tons of doctors appointments and trying to keep track of everyone.  Those little nuggets are hidden amongst more political posts about the R-word and me expressing my frustration at a world that is anything but understanding or kind.

This deserves it's own post... so here we go.

Whee

This is my son Wyatt.  He is a beautiful, empathic, adorable little guy.

He is, as of this writing, 20 months old. Wyatt has an AVSD and Down syndrome.  He takes no medication and is asymptomatic;  he only tires easily.  Sometime in the next year, he will have surgery to fix his heart.  He is expected to make a full recovery.

Comparatively, I knew nothing about DS before he was born.  I knew there were disorders and symptoms and even half that information was wrong.  I read long liturgies of therapies and treatments and learned of expectations and society's overwhelming negative view.  I quickly learned how one term 'mental retardation' was a condemnation to a life of marginalization.  A life of ridicule;  of insignificance.

But what does that even mean?  By definition, it is "a slowing", (which, ironically, is what proponents of the word use as an excuse after dropping the R bomb, but I digress...).  By practice it means completely disregarding another human being as being incapable of anything. 

Wyatt has a developmental delay.  It means that he learns to do things like crawl and walk later than average.  He may talk way later than his average peers, but given the range of non-verbal communication he already has (in terms of body language and two signs) he is very capable of making his wants known and expressing himself.

It's hard being his Mom sometimes.  It is.  What I'm about to say may shock and annoy some of you, but that is the risk we take here.  It is not hard to be his Mom because he has Down syndrome.

It is hard because of everyone else. 

The vast majority of people seem to have heard of Down syndrome.  Many think they know what it entails.  Again, I run the risk of annoying you, but here is the reality: most people really have no idea what it is and furthermore, don't care to know.

Even if you did know someone once who had Down syndrome or you knew a guy who knew a guy who dated a girl whose brother had DS... 

You don't know.

I am frequently asked completely ignorant questions and given pitying looks.   I am told things like "I don't envy you" and "you have your hands full".  I am asked things like "didn't you do the testing?" and "where do you find the time to take care of him?".  I was asked once, point blank, why I didn't abort him. 

I find any sort of description of Wyatt's parenting as "admirable" or "heroic" to be insulting as well.  When you think of it, all parents should be angry at that one.  It's what we are supposed to do, isn't it?

That's where parent advocates like myself come in.  I admit, I am not the world's authority on Down syndrome, far from it.  I do know what the first 20 months look like.  Thanks to friends I have met along the way, I have a good idea what 3 years, 6 years, 25 years looks like.  The more I learn, the more I write and the more I share.  The more I share, the more I educate.  If there is one thing that you walk away from this blog with, it should be this:  Down syndrome isn't anything like you thought at all. 

"All the extra work" I do with my son is a) not work as he is my son and b) no more or no less than I have done with my other kids. I am certainly not spending my life in the car going to therapy sessions and appointments, as many of my friends do, shuttling their typical children all over the countryside to hockey, gymnastics, dance, piano or whatever other activities they are enrolled in.  As a parent, you read to your children, you spend time with them on the floor, you introduce them to new things, you help them learn to speak, to sit, to crawl.  This is what we do with Wyatt;  we just have a few adaptations.  We've had a few pieces of specialty equipment here, but those have gone now.  To help him learn to kneel and pull himself up, we use the same thing his twin sister did:  the edge of the coffee table.  He has the same baby books, he has the same toys as his sister and older brother.  We just casually choose one over the others a few times a day and without him even being aware of it, he practices his skills.

Having children is not for everyone;  having a child with a learning disability isn't either, I will agree.  However, if you find yourself in my shoes, if you know someone who is having or has a child with Down syndrome, I want you to know:  it's not that much of a big deal.   He ain't heavy... he's my son.  He loves and is loved like my other two children, like children anywhere.  The only difference lies in the minds of his detractors, who cannot see past his almond shaped eyes and rounded shoulders.  Thankfully, through the efforts of parent advocates everywhere, those minds are slowly changing.

Wyatt will grow up.  Wyatt is loved unconditionally.  Wyatt has Down syndrome.  He ain't heavy... far from it.
"If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another"
    --The Hollies, "He Ain't Heavy, He's My Brother"
 


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Sunday, September 16, 2012

Silent Sunday: We are Family

Well, Hello There...

My Mouf Hurts

En Pointe
This Pretty Much Sums Up My Kids...
Brotherly Love
Awww...
Almost a family Portrait... Almost

I has a chair!

Now I has the chair.

Nope.  Chair is mine.
I love this one...
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Tuesday, August 21, 2012

Hear, Hear!

Listening to you, I get the music
Gazing at you, I get the heat
Following you, I climb the mountain
I get excitement at your feet
--The Who, See Me, Feel Me

Last Thursday, amongst two night shifts, two trips to the dentist and getting our ducts cleaned, we took Wyatt to the audiologist.  Like many preemie babies (with and without Down syndrome), he was referred for frequent monitoring of his hearing.  Those with DS are watched especially closely as there are a variety of hearing issues that can occur. He's had his hearing tested several times since birth , starting with our first trip when he was 4 months old (corrected).

Hearing issues are a common problem at birth (about 1-2% in the general population).  Many populations of infants are at high risk;  those amongst the highest include the premature, those with lower oxygen levels at birth, jaundice, irregularities of the head and face, infections, low Apgar scores and conditions such as Down syndrome.

Testing infants, as you can imagine, is a little trickier than testing a larger child or an adult that can easily indicate or describe what they are experiencing.  Also, there is the source of the potential hearing loss to consider;  is it a conduction issue or a sensorineural one?  Luckily, there are two different methods to test hearing in the little ones.  Both are automated, non-invasive and do not require the infant to react to anything.

ABR (or BAEP)

The Auditory Brainstem Response (ABR) or Brainstem Auditory Evoked Potential (BAEP) test monitors electrical impulses between the auditory nerve and key portions of the brain.  Electrodes are placed on the scalp and the activity is recorded as a series of clicks are delivered to the infants ears via small earphones placed in the ear.  Using this test, it can be determined what range of hearing the child has. 

OAE

The Otoacoustic emission test  (OAE) measures a sound bounced back from the inner ear and tests the functioning of the cochlea.  An earpiece containing both a microphone and a sensor is placed in the ear and a series of clicks and tones is measured once it has been processed by the inner ear.  Sounds that are required for understanding speech are tested and based on this criteria, the child either passes or fails. 


Wyatt has always passed with flying colours in his right ear, but his left was presenting with some odd results.  During the OAE, we were either detecting fluid in the inner ear or a small depression on the eardrum itself.  This time, as he is older and now able to be conditioned to a stimulus, we had a new test; he was taught that after he heard a sound, a mechanical toy would light up and play for a few seconds in a shadow box.  Tiny microphones, identical to the ones he wore in his ABR tests, were placed in his ears and he was given some toys to occupy his attention when he wasn't being tested.  He loved this test, was conditioned after two tries (!) and passed with flying colours.  So much so that he has been discharged from the high risk program at Erin Oak and will only have to return if we encounter problems (such as suspected damage from ear infections, etc). 

We were happy to get this news;  not only is it one less appointment to worry about, but knowing that his hearing is perfect and speech ready is a weight off our shoulders.  We kinda knew that anyway... That kid could hear a cookie wrapper opening in the next room with the radio on and his brother and sister noisily tearing about the place.  However, now we know his hearing will not hamper his language development.  Which is important, as I long for the day that he can finally say (using a word or sign) "Mama".

----------------------
Hyde, M., Newborn Hearing Screening Programs: Overview, The Journal of Otolaryngology, 34:2, August 2005.

Mersch, J., Kibby, J., Newborn Infant Hearing Screening, MedicineNet, 2012

Special Thanks to:

Infant Hearing Program, Mount Sinai Hospital, Toronto.

Erin Oak Centre for Treatment and Development, Ontario.
 
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Saturday, July 21, 2012

Golden Years

"Don't let me hear you say life's taking you nowhere, angel
Come get up my baby
Look at that sky, life's begun
Nights are warm and the days are young
Come get up my baby..."
-- David Bowie, Golden Years

I know I run the risk of sounding like a broken record as I keep repeating the following, but the passage of time completely confounds me some most days.  We've recently passed the babies 17th month "birthday" and the whole concept has me completely arse-over-teakettle.  It can't possibly be almost a year and a half since I beheld their fragility (literally) in the palm of my hand.  But here they are, my twin toddlers.  As time flows ever forward, they continue to make a splash, both in the pool and wherever they go.

My confusion is only compounded by the hours I keep, I am sure.  Although I know I work two 12 hour days followed by two 12 hour nights, for some reason, I think of that block of time as only two days.  I can keep track of the date, of the days of the week that I work, but in my head and as far as my body is concerned it is only two.  Possibly due to the pattern of "2 and 2", who knows?  In any event, what I think of as 'two days' is actually four days that I am out of commission as far as my family is concerned (five, if you count that the last day is dopey-stunned-sleepy day).  It is no wonder that it seems that the kids' heights have shot up overnight or that I am frequently taken aback by some new feat that I am assured by their father that has been occurring for some time now.

It's still surprising somehow that in my slightly out-of-time bubble, each day seems to bring new developments and skills.  Wyatt can now get just about anywhere he wants with a combination of commando crawling, pivoting, rolling and inch worming.  With the help of his worker from ICDSP we are trying to get him to crawl on all fours. He can put himself on his knees as I often find him actually sleeping in a knee-chest position and once put in this position he is quite comfortable to stay that way for some time.  It's just a matter of him doing routinely and finally making the connection that knees make for faster movement.  When that happens, you can bet that he will not stop.  You can almost watch the muscles in his legs developing;  what were skinny chicken legs a scant few months ago are now fleshed out and now match his little dimpled Popeye arms.

You can see how far he's come in the short videos that I shot of them in the pool the other day.  When I first plunked him in the chest high water (that was way deeper than any bath that he has ever had previously) he had difficulty with buoyancy.  First his one leg floated up, then his other and at one point I had to grab him to keep him from tipping over into the water and going under.  Within a few minutes he was holding on to the side for support and a few minutes after that he was confidently sitting in the water by himself, splashing away.  He had to correct himself a few times, but managed to keep himself from a dunking.  Both babies were having so much fun that I had to almost forcibly remove them as they were shivering, despite a Humidex of over 40 degrees Celsius. 


There have been changes in their diet as well.  Both babies seem to be weaning themselves off breastfeeding, although very sl-ooooo-wly.  The last two months have seen it reduced from every meal to morning-noon-night, to morning and night and now to just morning.  I guess I'm still the best part of waking up.  I thought we were completely done two days ago, but by yesterday morning, they were ready to go. It's been a bit of an emotional experience for me, fueled, I'm sure, by my fluctuating hormones.  Don't get me wrong... I don't really enjoy the whole thing.  Although it is a special bonding time with me and the babies (and is important as it is my time), I wouldn't call it pleasurable at this point.  Both have teeth and Wyatt right now is using his (with worrying skills that would be the envy of most puppies) at every oppourtunity.  Zoe learned quite quickly that nibbles meant a flick in the nose but her brother learns differently.  I don't use the same technique on him as the first time I did it, he completely lost it and wouldn't stop crying for what seemed like hours.  I've changed my tactics, but it seems now that he's almost afraid to nurse as I will look sternly at him and whisper (often through gritted teeth) "No biting!"  I guess morning hunger overrides the need to chew, but that bittersweet countdown has started.  It will mean more freedom for me, to be sure.  It also means the very end of my childbearing and "baby years" and I am going to allow myself the luxury of grieving that.  There will still be toilet training and drinking from cups and all sorts of exciting things in the wind but that sweet baby newness is gone.  Babies are both tiny and vast at the same time;  although they are small and vulnerable, they also seem to have a connection to the cycle of life and the universe.  Breastfeeding to me has always represented a link to that, a tether to the Infinite.  This part of motherhood is closing to me now, to the sound of happy dancing feet and toddler laughter.  As I walk into this new chapter with my children in hand, I cannot help but wistfully look back.  There is no turning around as I am getting old, but I can't help one last glance. 

Somewhere in my melancholy I realized that we are also approaching a new round of appointments.  Included in this is one with the cardiologist in August.  Hopefully we can get a definitive answer to what is going on with Wyatt's heart and what we will be doing about it, if anything, in the near future.  I'm hoping one way or another to end our period of "watchful waiting" as my friend Renata calls it over at Just Bring the Chocolate.   Many mothers of children with health and developmental issues will recognize this state, the constant evaluation of this one aspect or this particular miniscule behaviour or symptom or thing... and what the possible ramifications could be.  Watchful waiting... I like that.  Since Wyatt's birth I have, both consciously and subconsciously been waiting for the other shoe to drop, as it were. In this case, the shoe is a hob nailed boot that lands squarely in my chest.  Is he tired as he did not nap long or is he tired as he is not getting the oxygen he needs?  Is that cough because he has just gotten a noseful of dust from poking around at the edge of the couch or is he going into CHF?  The other day, to my horror, I discovered that his lips and tongue were blue.  I could feel my panic rising as I laid him on his back and started a head to toe on him, only to discover that a) his lips and tongue were not blue, but dark green and b) he had eaten a small discarded piece of paper from one of his big brothers numerous craft adventures.  Indeed, I found the offending wad still lodged in his palate and his grin faded as I swabbed it out with my index finger.  He looked at me as if to say "whyfore you steal my gum, mom?", while the entire time I am trying not to have a stroke.  Crisis over, we go back to usual patterns of subconscious surveillance and assessment.  Watchful waiting.  Yes, exactly.  I may never be able to completely turn it off, as it burns mental RAM quietly in the background, but I dream of a day where I can turn its settings down several notches.

There have been a few new behaviors from Wyatt that seem sensory related.  Not too long ago I threw some frozen broccoli and cauliflower into the Baby Bullet to hopefully chop them up for lunch.  Normally I process cooked veggies, but my (incorrect) thinking that day was that they would be chopped into pieces if left frozen, instead of rendered to puree.  As I was discovering my error, I looked over at Wyatt who was frantically wailing with a terrified look on his face.  He listens to the blender all the time,  in fact both kids react to the blender the way most pets react to the electric can opener:  Yay!  Lunch!  This time I guess the sound was slightly different and more random-ly clatter-y and he lost his mind over it.  A similar experience happened the other day when he picked up a piece of scrambled egg that was a little too warm.  It wasn't hot, but it too sent him into hysterics.   Wyatt doesn't cry as a rule, unless he is hurt, so this is a brand new thing for him. 

Another new thing is the sleeping habits of both twins.  Zoe's is hilarious:  hand her her tookie (soother), her bunny, her blanket... and she simply flumps over and that is it.  Goodnight.  Unless she loses her tookie and then it's a very sad baby until she finds it and then once more, flump!  Goodnight.  Wyatt has proven a bit more difficult lately as he will not settle for love nor money.  Even if he falls asleep during his bedtime snack, he will wake up and play until at least 10:30 pm. He's back up again at 7:30, so you can see how this cuts into any alone time that Sean and I have any delusions wishful thinking about. 

Mr. Quinn is turning into a young man in front of our eyes.  He is an excellent big brother, always there to save Zoe from her folly (like climbing on the coffee table) or to de-tangle Wyatt from some offending toy/article of clothing/room hazard.  We try to set aside special time for him every day, just to make sure that he does not feel left out.  He and his Dad have Lego Batman 2 to go through together at the moment, so I have to look for my opportunities with him.  Recently, he helped my plant my garden;  my brother had picked up some pepper and tomato plants for me and Quinn helped me organize everything and put the plants in the ground.  Hugging him is like hugging a coat rack these days as his baby fat is a dim memory and he seems to be all angles.  He too surprises me daily, with his intellect and quick wit.  He also expresses insight and empathy in levels that I wish many adults could develop.

We watch, we wait and we marvel at new developments. This is what we do.  It's not always rosy and happy;  we all have our times of trouble.  Work.  Money.  Stuff.  It's just life. We can't stop the march of time, I wish we could.  What we can do is bend it a little, to be able to relish particular points in time.  We don't really have golden years, we have golden moments that shine as brightly as the dawn.  It is these moments that illuminate the darkest of hours and fortify us for future trials.  A little more muscle tone, a little more communication, a little more self correction and independence.  Watching Wyatt stop himself from falling forward in the pool is the culmination of months of work and a perfect example of what I speak.  It is over within a second, you will miss it if you are not looking.  He used his trunk muscles, his legs, his arms, his balance and reacted in an instant to something that could have been dangerous.  To him, it meant multiple systems working in tandem.  To me, it was a ray of light.  That one gleaming moment and others like it, mean more to me than all the actual gold in the world.

I have a good life.  We have a good life.  Not all of it glistens, but enough of it lights the more shadowy paths.

(Whop, whop, whop...)


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