Saturday, January 27, 2007
I am hypnotized by her beautiful voice in the beginning of her "In My Own Language" video -- when I play the video, Paige comes running to hum along with her. Perhaps Amanda's next adventure should be to put that voice to a cd that we could soothe our babies to sleep with.
I don't want to use words such as inspirational or amazing, as I suspect that Amanda does not see herself as particularly extraordinary, but rather understands the limitations of those of us whom society labels "normal."
Indeed, I deserve the "handicapped" label much more than Amanda does. Because Amanda's limitations are more visible to our society, we judge her with many labels that do not even begin to tell us who she is as a person. But my limitations are much more hidden, and much more acceptable to the world.
We perhaps foolishly assume that Amanda needs to be fixed, and set out to fix her. I imagine many people over the course of her lifetime have tried to train her into being a more "normal" person. We go so far as to assume she would be happier, better off, if we could just achieve this state of normalcy for her.
Many of us do indeed see her as an unperson, as she assumes. We fall into the mistaken belief that what you see is what you get, and that, because she looks and acts differently than we do, that she does not have a full range of intelligence, human emotion, and personhood.
For about two or three months, I have been trying so hard to put into words the things that Amanda is telling us. I have been so bothered by the feeling that we are missing something in our "inclusion" quest for our children.
We want so badly for our kids to be a part of the big world that we spent inordinate amounts of time teaching and training and showing them the 'ways of the world' -- and while I fully understand why we do this, and also believe that it is a good thing that we do this, I am also worried that we will spend too much time trying to "normalize" our kids, and not enough time enjoying them for the unique, wonderful human beings they are too.
Five years ago, I would have insisted that Paige be fully included in a classroom of her same age peers for the entire day. I would have fought for that in any way I had to.
This year, my heart and soul have been leading me to a softer approach. Paige needs to be with people who are both different than her and who are like her as well.
She is not broken; she does not need to be fixed. Paige deserves educational opportunities similar to those of her peers. She is a smart little girl, who is classified as "low-functioning" by anyone who wants to label her. But she learns, and she learns well. I can see her observing her world, and trying to understand some of the things that still puzzle her.
She has many friends at school. And I think the majority of those friends are ones who just see her as she is...simply Paige. We have developed a sort of "reverse-integration" plan for Paige this year, where part of her day is showing the children in her classroom about her world as well. The children fight to be the one to spend time with Paige -- to do projects that are perhaps way below them cognitively, but are Paige-led and allow them to really know this wonderful little girl.
They are getting it -- they are understanding what Amanda has shown us in her video -- that we all excel in some way, and we all fall short in others.
Thank you, Amanda, for putting into words something that I could not, even though I am supposed to have a command of the one and only language I use. Thank you for translating it in a way that this limited brain of mine could understand. Thank you for showing the world your value, and shame on any of us who would have otherwise missed it.
Be patient with us, Amanda -- we still have so much to learn.
Thursday, January 25, 2007
This is an AMAZING video about a woman who is autistic. Its quite long, but so worth watching -- it explains so much.
I am so humbled by this video, that I'm sure I've watch a dozen times. This woman also maintains an amazing online journal -- you can get the URL from the comments section of this post.
I've often been asked how we "communicate" with Paige, since she is virtually non-verbal. But she is so expressive that I forget sometimes that she doesn't have spoken words. They say that communication is only 5% words and the rest is body language, etc. -- that is so true in our house!
Take the time to watch this...
In My Own Language
Tuesday, January 23, 2007
National Down syndrome Congress*~*~*~*~*~*~*~*~*~*~*~*~
After careful review of ACOG Practice Bulletin 77, the NDSC has issued the following statement:
FOR IMMEDIATE RELEASE
Contact: David Tolleson
770/604-9500 January 23, 2007
ATLANTA - The National Down Syndrome Congress (NDSC) condemns recent recommendations by the American College of Obstetricians and Gynecologists (ACOG) that convey tacit approval for terminating pregnancies where the fetus has Down syndrome.
The recommendation for first trimester screening of all pregnant women is a change from the current practice of primarily screening women over age 35 who have a higher probability of having a baby with Down syndrome. Women under age 35 are also being screened, often without their full knowledge or consent.
Among the concerns cited by the medical doctors comprising NDSC's Professional Advisory Committee:
The primary medical reason for first trimester screening is to encourage earlier diagnostic testing in "at risk" pregnancies, in order to facilitate early terminations. Other reasons for prenatal diagnosis, such as hospital selection and delivery management, do not require first trimester testing.
Based on ACOG's figures, the recommended screenings will produce numerous false positives, potentially leading to unnecessary patient distress and possible termination of pregnancies where medical concerns do not exist.
All screening or diagnostic tests need to be fully explained to patients, who should be provided the opportunity to decline or give their informed consent for testing. If patients decline certain tests, physicians and other medical personnel should respect the individual's wishes and not overtly or covertly pressure patients to undergo undesired screenings.
Recent studies by Dr. Brian Skotko, published in the American Journal of Obstetrics and Gynecology (2005) and Pediatrics (2005) note that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information. ACOG's recommendations do not address this situation, nor how it will be corrected.
Studies have shown that parents and siblings of children with Down syndrome overwhelmingly report that having a family member with that diagnosis has been a good situation. Early intervention and inclusive education have led to largely positive outcomes for children with Down syndrome. It is unacceptable that many obstetricians present negatives -- and seem to emphasize pregnancy termination -- rather than reporting the facts, which paint a much more positive picture.
Parents who receive a diagnosis that their fetus has Down syndrome should have the opportunity to meet a family that includes a person with the syndrome, a move in keeping with the spirit of the Kennedy-Brownback bill.
NDSC Executive Director David Tolleson notes that "Down syndrome is a serious diagnosis; however we have seen families thrive." "We empathize with obstetricians who fear 'wrongful life' lawsuits," Tolleson adds, "but the cure for that problem is tort reform, not preventing the births of a whole class of people."
Jeff Mattson, a man with Down syndrome, agrees: "People with Down syndrome want to live life to the fullest."
According to Tolleson, "the NDSC is here to support doctors in delivering a diagnosis and parents through the pregnancy, birth and life of their child."
Monday, January 22, 2007
I’ve always felt that I would have more children with T21 in my life – I don’t even know the clear path to how that will come about, its just one of those peaceful feelings that you sense deep in your soul.
And as Nic will attest to, sometimes it happens when you are least expecting it.
Even with that, I must admit that I have given relatively little thought to the adoption process other than announcing almost daily to my husband, my family, and anyone who would listen, that I would love to adopt a child with Down syndrome.
My views on adoption have always been very one-sided, as I am sure most people’s are. I imagine a loving family who desperately want a child finally being given that gift. I see the Hallmark commercial in my mind where that baby, or that child, is welcomed by a family so very grateful and so very happy.
Of course, as much of my life perspective’s have been wonderfully changed by Paige, I almost always relate that commercial to a baby with Down syndrome. (In fact, I relate every baby commercial I see to Down syndrome, but that’s a whole different post, and a whole other campaign we must embark upon!)
I know the statistics – that there are many families waiting to adopt a child with T21 – that these families are comprised of single parents, and married couples, and young people, and older people, and quite often, of people who’s lives have already been touched in some way by T21.
But through the beauty of Nic’s story, and through the very real contemplation of the fact that the medical community wants to identify ALL babies with T21 prenatally, I have now given much thought to those families who chose adoption for their children.
As a mother who screened kindergarten teachers just slightly less than the Secret Service screens people who will be near the President of the United States, I cannot for a moment place myself in the perspective of a parent or a family contemplating adoption for their child.
What a leap of faith it takes to make the adoption decision for your child. To do so truly means that you must face the unknown, that you must believe in a process and a system that will ensure your child will have the best possible future.
And all of these processes that are put in place are not infalliable. No matter what we do, no matter how many questions are asked, we are all humans, and that child will live with people who are not perfect.
At the absolute best, he or she will live with a family that makes mistakes, is grumpy sometimes, is overwhelmed, who faces hardships – financially or emotionally.
At the absolute worst, well, that is unimaginable.
So, how can we, those who are fighting so hard to tell the world about the beauty and wonder of people with T21, not embrace those who make the adoption decision? How can we not come together, with our hearts open, our shoulders available to lean on, our arms outstretched, to make this journey a bit easier for those who make this choice?
How can we possible not celebrate their decisions, commend their unselfish choice, and stand up for them against those who would judge.
Just imagine…imagine…having to make such a faith based decision – so unsure of the unknown for your baby or child, and then having those around you criticize you, judge you, tsk at you?
Imagine the strength that one must have to make this decision.
For some families who give birth to a child with Down syndrome, choosing adoption is a very real option. And we must embrace this option – we simply must do this. And we must do a better job at supporting those who make this choice.
I frequently write in my blog about how I feel called to this world of T21 – that it is my “ministry” and that I am very honoured to be a very real part of it.
Just as I have grown and learned and changed my mind about topics relating to T21 over the years, I think that we must acknowledge with great respect the fact that all of our stories are very different – all of us have paths and journeys that are exclusive and unique to us.
Just as I embrace and advocate for Paige in my own way, there are families who have touched by T21 who will find their own path – and that path may very well be the road less taken, just as mine has been – one that gives them strength and makes them pioneers in this adoption route – perhaps a child was given to them to show the world that families are made in many different ways. And perhaps their intended journey is to help all of us understand a little better how the decision to chose adoption for a child comes about.
Saturday, January 20, 2007
He's been having a great time enjoying his first snowfall -- a very late arrival for Ontario -- and buries his head in it like an ostrich in the sand! He romps from one snowbank to the other, rolls in it, shakes, and does it all over again.
He is so eager to please and so easy to teach.
His puppy teeth are coming out, and Dakotah keeps trying to get away with putting them in the tooth fairy box, and tucking them under the beanbag he has adopted as a bed. I think I am going to fool her and put a snausage in it one night!
Sunday, January 14, 2007
The letter is not sugar-coated; I speak of those first years of Paige's life that were so filled with many medial interventions, and of all the changes that we made in our lives to welcome this girl of ours -- the therapies, the changes in perspective that we made, etc.
But, I hope that it is a letter of pure joy that can only have come from knowing and loving Paige; one of the challenge of unconditional love in a way that some parents may never understand, but one that our family embraces every day.
Often, I get calls from families who have just given birth to a child with T21 - who have read my letter, and want to talk. I know how difficult that first call can be; as I remember finding out prenatally that Paige had T21, and speaking to a wonderful person from the DS Society here in Ottawa.
I remember her telling me stories about her son, and feeling so free to ask questions that I could not ask anyone else. And none of those questions were shocking to her or strange to her. She was just a normal mom, raising her son.
It was very comforting to me, and I hope that I have made this journey easier for many families during the last 10 years. I know that I have built friendships with some people that will never end because of that letter -- my friend, Camille, and her absolutely amazing daughter, Emma, who will be a part of my life until my days are over. And our mutual friend, Carol, and her daughter, Olivia, and so many more...
And so, it is, of course, my hope that my "ministry" has made a great difference for many people. I hope that people see me not so much as inspirational, but as a regular ol' mom who shows them that they too can take this journey.
I've also remained relatively active online throughout the years, with breaks when my heart was overwhelmed and overburdened because there are so many people still to touch and connect with.
There are times when the debate has gotten not so pleasant. There is a woman whose daughter was born with Turner's Syndrome, and the same congenital esophageal birth defect Paige has that still spends lots of time on pro-termination boards. She is bitter and angry that she gave birth to her daughter, now about 8 years old, and was not given a choice to abort her. She openly says she would have chosen abortion had she been "warned."
Her and I have gone back and forth thousands of times, as I fear that she is doing a great deal of damage by making this her agenda -- virtually stalking prenatal boards and urging people to terminate.
She paints a horrible, sad picture for people to see, of a child with a great many needs; how it has ruined her life, her marriage, her career. I believe that she needs a great deal of help and worry so much about her child; it seems as if she is quite well cared for, but is she loved and adored?
And she would say the same thing about me; that I am too close to Paige, that I don't "have a life", that I paint too rosy a picture.
I don't know; I guess if I had to live one way or the other, I'm glad I chose this way.
I'm sure that I haven't always made the difference I've wanted to make. I know that I have sometimes spent hours speaking with people online after a prenatal diagnosis, and they have still chosen abortion. I know in my head that I was not their deciding factor; surely they would have had more people, more connections, and more contemplation than that of what I had offered to them.
But it is still painful and personal to me when we lose "one of ours." Its very hard for my heart not to ache, and my head not to wonder what I could have done differently; what I could have said; how I could have reached that person with what I believe to be the real truth -- that our children are so, so much more than a diagnosis.
About 6 years ago, I got a called from a woman who's partner was pregnant with a child who had just been diagnosed with Down syndrome. I spoke with her on the phone a great deal; e-mailed them, and finally invited them to our house to meet Paige and our family.
I knew that they were an alternative family; and that this child was very much planned for and wanted. They were intelligent and friendly, and also very pragmatic. They were indeed doing their research, and readily admitted they had not decided what they were going to do yet.
When we met, they were about 10 days away from their "deadline" (what an ironic term) -- after that, abortion would no longer be an option.
To be fair, they did the footwork -- they had read a ton on the internet; they had interviewed the doctor who runs the T21 Clinic in Ottawa; they had told their families about their son, and the fact that he had Down syndrome.
We spent hours together that day; and I learned a lot about them; about how they had fallen in love; how they had to tell their families that they were gay. They had a wedding ceremony, and one of the women had a daughter from her first relationship.
They were, by all observations, a very loving couple. I gave them a copy of "Expecting Adam" and dedicated it to their baby.
I compared their lifestyle with the upcoming birth of their son; how it would be hard to tell people in the beginning; how some people might judge, and look at him strangely, but, in the end, how the people who mattered would embrace him and adore him.
They shared honestly with me that they had been very lucky to conceive on the first attempt at artificial insemination; that it was a costly procedure that they could not afford to do over and over again, but that they felt somewhat cheated that what might be their only chance had so many unexpected complications.
They considered abortion because they wanted a "normal" child, and did not feel as if they had the gift of time to do it again after he was born.
At the time, Paige was not well. She had just had surgery to remove her gallbladder after a very, very sick winter where we did not know what was going on. We came close to losing her that winter, and she was frail and delicate.
Paige is quite low-functioning, and at the time, was pretty shell-shocked from so many medical interventions. She wasn't bubbly and outgoing during their visit, but rather quiet and aloof.
I felt as if they looked at her rather than to her -- they seemed to be observing, pondering, wondering. I didn't see a connection to her made, and that bothered me very much.
Like all mothers, I wanted them to see her as the beautiful, sweet child that I embraced. I wanted them to see beyond her limitations, to the fact that we knew that she would soar no matter what.
Perhaps it was too early for them to see that, or perhaps they really did see it.
I will never know.
Later that week, I received a final e-mail from them telling me that two days after they had visited, that Beth had gone into labor and delivered a stillborn baby. They asked me not to contact them again, as it was too painful for them.
I will never know if she did in fact go into labor or if they decided on abortion. I will never shake the feeling that I may have failed them.
Lately, I have been particularly haunted by them; as my friend, Nicole, has been touched by the adoption of a child with T21. I didn't even consider it; didn't even mention the possibility to them.
Perhaps that would have made a difference, and perhaps a family would be embracing that child now.
We praise and embrace people who chose to adopt, but we have so far to go to support the families who decide to give these children to loving families.
First They Came for the Jews
First they came for the Jews
and I did not speak out
because I was not a Jew.
Then they came for the Communists
and I did not speak out
because I was not a Communist.
Then they came for the trade unionists
and I did not speak out
because I was not a trade unionist.
Then they came for me
and there was no one left
to speak out for me.
They are widely touting this testing as a way to ensure pregnant women that their babies are "healthy." All of us who's lives are touched by Down syndrome know better. If the concern was for the health of a child, the intensity of this testing would be focused on better ultrasound screening of a unborn baby's heart, or digestive system, or any number of anomalies that would be apparent on an ultrasound.
A test for chromosomal count does absolutely nothing more than give a chromosome count. That's all. Yet, propaganda dished out by many medical professionals to vulnerable pregnant women convince them that they are ways to ensure a perfect child...that these tests will somehow give them insight into their child's life for the next 20 or 30 or 50 years.
Even the most accurate of tests will tell them very little about their child's future, regardless of whether or not that child has a typical chromosome count.
This week, my nephew and his wife gave birth to a perfect, sweet little baby boy named Cameron.
Cameron's Mom is Jewish, and Cameron will be raised with the Jewish faith and all of its traditions.
Although no one else in our family is Jewish, I can tell you that at just 5 days old, every one of my family would lie down their lives to protect this sweet angel baby. Our entire society would be absolutely appalled if he were to be treated differently because he is Jewish.
History has shown us some very horrible lessons, and we would never, ever, ever, tolerate the eradication of a unborn child because of his religion.
Please pray with me, for my daughter, for the many, many friends she has with T21, that we will be just as appalled at the thought of anyone suggesting for even a moment that our world would be more perfect without them.
Please let our families find a way to get the correct information out to expecting parents; to reach out and share our stories, and to fight the "big guys" -- the medical statisticians who need to see the humanity of what they do.
I did not have Paige because I didn't know. I do not want her despite the fact that she has Down syndrome - I want her because she is my daughter. She is not a burden to our family or to her classmates, or to our society.
She cannot speak a word.
But she has a message.
A message that will not be silenced.
Tuesday, January 09, 2007
Cameron William Stevens weighed in at 8 lbs, 6 oz., the exact weight his daddy was when he was born. I am beyond thrilled, and cannot wait to meet baby Cam.
Once Craig has updated his blog, I'll link to it, so you can read the story of his name, and his birth.
Every child deserves to come into this world wanted, loved, cherished, adored. And Cam certainly is. We are already so in love with this little guy, and so proud of his Mom and Dad for the amazing people they are.
I can't wait to see this tiny baby grow into a little boy with the most perfect parts of each of his parents shining through.
Welcome to the world little one. Its a better place for having you here.
drifted down from above-
A handful of happiness,
a heart full of love.
The mystery of life,
so sacred and sweet-
The giver of joy
so deep and complete.
Precious and priceless,
so lovable, too-
The world's sweetest miracle,
baby, is you.
-- Helen Steiner Rice
So, tonight I answer the phone and its Wayne.
"Hi, let me talk to Mom."
"I am the Mom."
"Come on, I'm driving - let me talk to Mom."
"I AM THE MOM!!!"
I'm still not sure he believed me even after he hung up!
I wonder, can one grow a grown-up voice at 42?!?!?
So, look for posts about our holidays, and the different ways we celebrated this year, about our new puppy, about our newest family addition, my nephew Craig's son, due to be born at literally any moment now.
And also, I really want to get my thoughts down about the American College of Gynecologists new recommendations for prenatal testing. As you can imagine, I have some definite opinions and thoughts on that. And, I have some ideas that I hope to put into practice that may make a difference for people receiving the news of this testing.
I'm in the process of trying to self-create a job for myself -- as if I need more on my plate :) -- I'll post more about that as I go along.
I hope all of you who read my blog had wonderful holidays -- and know that I checked in frequently to see how everyone was. For anyone looking for amazing inspiration in motherhood, please click on the blogs on my sidebar -- I'm very blessed to know some very, very amazing mothers.