Thursday, August 21, 2014

The Challenge for all of us is this:

Before I even begin to say what I want to say, let me say this.

ALS research and funding is very important, the people who live with it are indeed very deserving of this incredible and very simple campaign that has raised an astronomical 41.8 MILLION dollars as of today. Wow. Great job.

This young man lives with ALS in a very real way. His emotions are raw, and heartbreaking. It is a devastating disease that has taken so much from so many. And it needs to be funded.

The past few weeks on social media have been astonishingly full of this Ice Bucket Challenge. In fact, my own daughter will participate in one with her cheerleading squad this afternoon. I get it.

But I have a question for you?

Have you ever heard of a Challenge to raise funds for people living with Down syndrome?

Lets compare numbers:

NIH funding for ALS this year is projected to be $40 MILLION dollars. 40 million! That is a lot of money.
Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert. Every day, an average of 15 people are newly diagnosed with ALS — more than 5,600 people per year.

As many as 30,000 Americans may currently be affected by ALS.

NIH funding for Down syndrome this year is projected to be $19 million dollars. $19 million is also a lot of money. But it is less than half of what is spent on ALS. Why does that matter? Well, ALS is thought to affect as many as 30,000 Americans. People currently living with it.

Down syndrome? It affects some 400 THOUSAND people!

370,000 more than ALS. Half the funding.

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

There are more than 400,000 people living with Down syndrome in the United States.
Where are our advocates? Why are we just sitting idly by and not doing something? Grassroots, creative, fun, social-media-based. We have GOT to stand up and demand to be heard. NIH isn't going to fund us.

Down syndrome is the least funded major genetic condition by our National Institutes of Health (NIH) despite being the most frequent chromosomal disorder (1 in every 691 babies in the US is born with Down syndrome). The funding for research benefitting people with Down syndrome at the NIH started a continual and precipitous decline in the year 2001. Even compared to other intellectual and developmental disabilities or comorbidities, Down syndrome has been funded anywhere between 3x and 11x less on a per capita basis year on year. It is important to educate our representatives in DC, with the NIH and other federal and local organizations in terms of how basic, clinical, developmental and educational research benefits people with Down syndrome and their families. In order to reverse the lack of funding for people with Down syndrome we must advocate strongly but do so in a spirit of partnership and cooperation.

I have a challenge for those of us who love someone with Down syndrome. SHARE THIS POST! Talk about it. Be respectful, kind, and understanding. We aren't begrudging the folks with ALS and their incredible fund raising ideas. But we DO want to find a way to do this within our own community. We NEED to do this. And we need to raise our voices together and demand answers as to why the most commonly-occurring chromosomal condition receives the LEAST amount of funding.

Friday, January 24, 2014

What Ciarra sees

earlier this week, Ciarra told me about a student that used scripting to deal with her emotions at school. "Yesterday on the way to school, Ciarra and I were talking about how much she loves the class and teachers. She told me there's a girl in her class who hates it and is rude to the teachers often. Tells them to shut up, etc. Then she told me that the girl has autism and "really tries hard but the autism makes her mind work funny. Like SCRIPTING, she doesn't want to script, but autism makes her do things different" SCRIPTING. My kid not only understands the uniqueness of another kid with disabilities, she was able to tell me all about what scripting meant (her thinking is that scripting means the girl goes into character when she is naughty so it isn't HER being bad, its the characters words/actions:.and yes, she used the word character) Ciarra is SO smart and aware and thankfully has the ability to tell me what she thinks. But it surprised me how maturely she thought of the situation."

I was impressed by what MY child knew. But somewhere in the back of my mind, I wondered...WHERE did she learn this word? What has she seen, and heard? Then I read this.
What I saw I left the gym, I had to, because the music made me uncomfortable. I stood by the door. I waited. I turned toward the door to the gym, and I saw a classmate burst through the door, an aide inches behind him. The aide grabbed a strap on his vest and stopped him cold. The student struggled. Aides thronged at the little windows. I know what they saw. They didn't see someone asking to be taken for a walk. They didn't see him begging to have some space. They saw an escape attempt. A noncompliant escape attempt. A student trying to outsmart the teachers, to get his way. They saw someone who didn't understand the point of P.E. They saw a runner. He pulled away, and the aide pushed him back through the gym door, shouting "In we go! In we go! In we go," his hands pulling and pushing as the student dug his heels in. Everyone else "encouraged" from the sidelines. I saw too much happening. I saw an apraxic struggle. I saw a nonverbal student being pushed through a door in a frenzy of movement, everyone shouting at the same time, bent over with hands thrusting at his back, pushing against the doorframe and struggling to stay upright. I saw too much, too much. I saw a blur of movement and sounds coming at me from every direction, I saw the ceiling the doorframe the floor somebody's hands everyone shouting. I saw the final thrust through the door, met with bright lights and cheering, everyone applauding the nice save! I saw dizzy and disoriented. I saw what he saw. I saw a classmate who couldn't respond to prompts because they were coming too fast, and who couldn't comply because everything was being thrown at him at once. He slumped against the gym wall and slammed his head back. The act was met with a sharp reprimand from a bystanding aide. And I know what they saw. They saw defiance. Headbanging behavior. A tantrum. I saw a student trying to block out external input. I saw. Everyone else gawked and chattered as the other kids did the warm-ups. I stood by helplessly. I saw a humiliated man sitting against a wall in a corner, helpless and outnumbered, with no way to communicate. I saw what he saw, the flash of students flying all around me and I saw people surrounding me, cheering, cheering for the aide as though it was some big victory to drag a student back into a classroom. I saw the world whirling around my head and it hitting the wall just to drown out the noise. I saw that nobody was asking themselves how he might feel. I didn't just see the defeat, though, the lack of dignity or respect; I saw humiliation. Oh, yes, I saw. Pain. I watched in horror. I felt for him. I felt with him. An aide, concerned that I had left, asked me if I was ok. Then she smiled at me knowingly. Chuckled, "He's having a little fit." No. That's not what I saw. I saw an overwhelmed student trying to escape a hostile environment. An attempt to find a safe place, or a bathroom, or some water. I saw a hasty and disjointed "rescue" that fried his emotions and ability to think. I saw visual, auditory, vestibular and tactile input slam him like a truck. I saw vestibular upheaval, and I saw desperation and fear and frustration because nobody understood, not one of them. They saw a fit. They didn't see what I saw. ***** I know, I mouthed across the aisle. It's ok. I know. He smiled back at me. I know. The bus engine rumbled, and we began to pull out of the lot. They were still talking about him, imputing motives based on their own experience. I knew that he could hear them. That they didn't really care. That it wasn't my place to correct them. To try and educate them. Not the student's place. I saw the look on his face, and I knew that nobody understood. He sat alone, leaning against the vinyl of his seat, his expression fraught with distress, his eyebrows knit. I knew that they were fine, and they could sit there and casually theorize about it, but that he was still coming down. I saw the look in his eyes. I didn't know what to say. I saw his hand, resting on the seat. Hesitating, I leaned into the aisle and placed mine next to it. I didn't know how else to say I support you. His thumb wrapped itself around two of my fingers, and for a moment it was like that. Then he lifted his hand and took mine in it. I squeezed. I know. We stayed that way for about a minute. The bus rumbled down the street, curving around the corners, my hand in his. They said I helped calm him down. Sometimes people underestimate what it means to acknowledge someone's humanity. To see it. I don't know what they thought my gesture was, but we knew what it was. A show of solidarity. A quiet one, not a trumpeting fanfare, but a whisper. I know. This is what I saw. Very different from what the teachers saw. I don’t know exactly what he saw. I believe that it was terrifying. But I hope . . . I hope . . . that after the terror . . . I hope that he saw a friend.
I wonder sometimes what its like for Ciarra, high functioning enough to be in the typical kid sphere, yet disabled enough to be in the disabled world. Ciarra might not be able to articulate EVERYTHING she sees and hears, but she thankfully can tell me a lot. I wonder what its like to be someone SO intuned to emotions and feelings and other peoples pain and see the things she surely sees? Sometimes the indignities of disability are harsh. I know Ciarra is TRULY beloved by her teachers and aides, I hear it often..she is funny, smart, engaging, the life of the classroom. One teacher told me that another kid says "she ROCKS!" often...and he smiled telling me that he agreed. Like Ciarra, I can read body language really well. I know these people love my child. But do they see what she sees? Do they feel her compassion and sadness for others who aren't blessed with her gift of gab? I wonder.

Wednesday, June 27, 2012

14 years ago today my world changed forever.*I* changed forever. I went from a mother whose children were perfect, the smartest, fastest, brightest, future superstars to the mom of a child whose future was far less certain. They laid a baby on my chest who looked at me with her curious almond-shaped eyes and almost begged me to love her, regardless of her differences. And I did.

Me, who was terrified of "different". Me, who once used the "R-word" as a joke. Me, who could not see the beauty in the little ones with Down syndrome who had come into my life along the way, almost as though they were preparing me for the biggest job I would ever have. Me, who was forever comparing those very children to my own, and always found them lacking somehow. I was about to be humbled, dissected, and rebuilt. And in that process, my perfect children were about to gain even more perfection, they were about to learn unconditional love. It was a lesson we all needed. Did you know that in the original Wizard of Oz book, the tin man actually started out with a heart? In fact, he was wildly in love. But a witch cast a spell on him that caused him to hurt himself, over and over again, until he had lost all of his limbs, and had to have them replaced with tin. The tin man believed that this made him stronger, he was like a machine, and unstoppable. But the wicked witch cast another spell that split him in two, and tore the heart from his body. Still, he believed this made him stronger, because he didnt have to feel, didnt have to care. But he knew something was missing, and even with his invinceable body, he craved a heart. His body became rusty and old, and he longed to love again. Dorothy and the Scarecrow found him and took him to the Wizard of Oz to get a heart. Along the way, the Scarecrow and the tin man talked. “I shall ask for brains instead of a heart,” said the Scarecrow, “for a fool would not know what to do with a heart if he had one.” “I shall take the heart,” returned the Tin Man; “for brains do not make one happy, and happiness is the best thing in the world.” Indeed. When they arrived, the Wizard of Oz said to the tinman: "As for you, my galvanized friend, you want a heart. You don't know how lucky you are not to have one. Hearts will never be practical until they can be made unbreakable." Said the Tin Woodsman: "But I still want one." In many ways, Ciarra is like Dorothy to me, leading me to my heart. Taking me back to when I was young, before judgements and bias clouded my vision and stole my heart. The world is like the Scarecrow, trying to tell me that heart doesnt matter, that brains are all that count. Like the Wizard, I know that having your heart laid open for the world to see is painful, and that being this open to another human being will leave me vulnerable and scarred. I still want that. I am like the tin man, regaining myself piece by piece, allowing myself to learn to see what matters, searching for what is real and important and vital to life. The rust is falling away, my heart is open, and I have learned that it doesnt matter what the world thinks or wants. The only thing that matters is love. "You DARE to come to me for a heart, do you? You clinking, clanking, clattering collection of caligenous junk!" why yes, yes I do. Happy Birthday Ciarra Nichole. Thank you for teaching me to see past all the things that dont matter. Thank you for bringing back my heart. Ciarra Boucher is 14 today. <3

Tuesday, March 20, 2012

Grab This!
this little cutie is due home soon. Her family is doing a giveaway to help. Can you help at all?

Wednesday, March 14, 2012

Ciarra and I are SO honored to be a part of this video. World Down Syndrome day is 3-21.

Monday, March 05, 2012

Friday, February 24, 2012

Changes In Attitude....

The house is quiet, the men in my family have fallen asleep in their recliners, watching tv. Kristin is out with friends. Ciarra is asleep in her bed, Ipad, Ipod, remote control, a coloring book, and her ever-present baby blanket close at hand. She is a conglomeration of all things teen, and all things child.

She comes home from school, hurls her backpack and boots into the mudroom, heads to the kitchen for a snack, and then it is straight to her room for some Ipad time, a little Kei$ha, and some drawing or coloring. Middle school is quite exhausting, apparently.

She appears a few hours later, tells me she is headed for a shower, grabs her favorite nightgown from the basket on top of the dryer, and is off again. She takes a typical-teen sized shower, then comes out hair all blowed dry, excema cream on, and asks whats for supper. She tells me that the boy she is madly in love with told her she had cooties today. She doesn't much appreciate my responses, all placating and trying to explain. She has her own ideas, and they involve her scolding him harshly tomorrow at school. She has found her voice, and will use it to defend herself, even if it is from the beloved Devin.

She grabs some dinner, tells me she really really doesnt like it, requests a hotdog with a sweet smile meant to get me to comply, and waits patiently while I make her two, cut up, with ketchup on the side. As she waits, she holds the cat like a baby, tells her she loves her, pours her some food, and reminds me that she has a fieldtrip tomorrow and will need a note. Our lives are so normal sometimes that I forget all the things I worried about way back when.

Down syndrome means something different now then it did when she was small. It just doesnt feel like all that big a deal. On the other hand, my entrance into this very unique club of mothers has left some indelible impressions on my heart. Sometimes, I think I have forgotten the pain and the worry and the huge questions about the future. I do not recall as clearly the days I sat staring at her as she slept, worrying about all the things that might happen, that statistically could happen. And time has allowed me to forget, somewhat, all of the naysayers, the haters, the people who seemed to hang on my every word when she was small, reminding me just how much there was to fear.

There was a time when I was knee-deep in Down syndrome outreach. I would see new mothers, worrying themselves sick, and I would do my best to tell them it would be ok. Inevitably, someone from the other side would leap in, attack me and my views, and tell that unsuspecting new mother just how awful her life was about to become. It took me awhile to recognize that the naysayers seemed to be a fairly small group of women hellbent on telling the world how awful it is to have a child with Down syndrome (or any other disability) in it. I couldn't fathom why that was. Then I discovered that many of them had aborted their own babies with DS or other fetal anomalies, and simply couldnt stand to see anyone talk about how it really was ok. It had to be awful, terrible, and not worth doing, for them to be ok with their own decision. My heart went out to them in many ways. I wished they had had the opportunity to learn what I was learning. I learned quickly that they didnt want my sympathy, and they didnt want me telling my story of hope anywhere.

In dealing with this group of women, I made a horrifying discovery. Babies just like mine were being aborted up to the date of their planned birth by various Drs all over the US who specialized in late term abortion. Whats more, Supreme Court Judges were wrestling with the legality of performing very brutal abortions on babies that had already been partially born alive. In the 2000 Stenberg V Carhart case, the graphic testimony of the Drs, as they described aborting "late term" fetuses shocked me to my core.


Question: Are there times when you don’t remove the fetus intact?

Carhart: Yes, sir.

Question: Can you tell me about that, when that occurs?

Carhart: That occurs when the tissue fragments, or frequently when you rupture the membranes, an arm will spontaneously prolapse through the oz. I think most...statistically the most common presentation, we talk about the forehead or the skull being first. We talked about the feet being first, but I think in probably the great majority of terminations, it’s what they world call a transverse lie, so really you’re looking at a side profile of a curved fetus. When the patient...the uterus is already starting to contract and they are starting to miscarry, when you rupture the waters, usually something prolapses through the uterine, through the cervical os, not always, but very often an extremity will.

Question: What do you do then?

Carhart: My normal course would be to dismember that extremity and then go back and try to take the fetus out either foot or skull first, whatever end I can get to first.

Question: How do you go about dismembering that extremity?

Carhart: Just traction and rotation, grasping the portion that you can get a hold of which would be usually somewhere up the shaft of the exposed portion of the fetus, pulling down on it through the os, using the internal os as your counter-traction and rotating to dismember the shoulder or the hip or whatever it would be. Sometimes you will get one leg and you can’t get the other leg out.

Question: In that situation, are you, when you pull on the arm and remove it, is the fetus still alive?

Carhart: Yes.

Question: In that situation, are you, when you pull on the arm and remove it, is the fetus still alive?

Carhart: Yes

Question: Do you consider an arm, for example, to be a substantial portion of the fetus?

Carhart: In the way I read it, I think if I lost my arm, that would be a substantial loss to me. I think I would have to interpret it that way.

Question: And then what happens next after you remove the arm? You then try to remove the rest of the fetus?

Carhart: Then I would go back and attempt to either bring the feet down or bring the skull down, or even sometimes you bring the other arm down and remove that also and then get the feet down.

Question: At what point is the fetus...does the fetus die during that process?

Carhart: I don’t really know. I know that the fetus is alive during the process most of the time because I can see fetal heartbeat on the ultrasound.

The Court: Counsel, for what it’s worth, it still is unclear to me with regard to the intact D&E when fetal demise occurs.

Question: Okay, I will try to clarify that. In the procedure of an intact D&E where you would start foot first, with the situation where the fetus is presented feet first, tell me how you are able to get the feet out first.

Carhart: Under ultrasound, you can see the extremities. You know what is what. You know what the foot is, you know, what the arm is, you know, what the skull is. By grabbing the feet and pulling down on it or by grabbing a knee and pulling down on it, usually you can get one leg out, get the other leg out and bring the fetus out. I don’t know where this...all the controversy about rotating the fetus comes from. I don’t attempt to do that. I just attempt to bring out whatever is the proximal portion of the fetus.

Question: At the time that you bring out the feet in this example, is the fetus still alive?

Carhart: Yes.

Question: Then what’s the next step you do?

Carhart: I didn’t mention it. I should. I usually attempt to grasp the cord first and divide the cord, if I can do that.

Question: What is the cord?

Carhart: The cord is the structure that transports the blood, both arterial and venous, from the fetus to the back to the fetus, and it gives the fetus its only source of oxygen, so that if you can divide the cord, the fetus will eventually die, but whether this takes five minutes or fifteen minutes and when that occurs, I don’t think anyone really knows.

Question: Are there situations where you don’t divide the cord?

Carhart: There are situations when I can’t.

Question: What are those?

Carhart: I just can’t get to the cord. It’s either high above the fetus and structures where you can’t reach up that far. The instruments are only 11 inches long.

Question: Let’s take the situation where you haven’t divided the cord because you couldn’t, and you have begun to remove a living fetus feet first. What happens next after you have gotten the feet removed?

Carhart: We remove the feet and continue with traction on the feet until the abdomen and the thorax came through the cavity. At that point, I would try ... you have to bring the shoulders down, but you can get enough of them outside, you can do this with your finger outside of the uterus, and then at that point the fetal ... the base of the fetal skull is usually in the cervical canal.

Question: What do you do next?

Carhart: And you can reach that, and that’s where you would rupture the fetal skull to some extent and aspirate the contents out.

Question: At what point in that process does fetal demise occur between initial remove...removal of the feet or legs and the crushing of the skull, or I’m sorry, the decompressing of the skull?

Carhart: Well, you know, again, this is where I’m not sure what fetal demise is. I mean, I honestly have to share your concern, your Honor. You can remove the cranial contents and the fetus will still have a heartbeat for several seconds or several minutes, so is the fetus alive? I would have to say probably, although I don’t think it has any brain function, so it’s brain dead at that point.

Question: So the brain death might occur when you begin suctioning out of the cranium?

Carhart: I think brain death would occur because the suctioning to remove contents is only two or three seconds, so somewhere in that period of time, obviously not when you penetrate the skull, because people get shot in the head and the don’t die immediately from that, if they are going to die at all, so that probably is not sufficient to kill the fetus, but I think removing the brain contents eventually will.

The day after Ciarra turned three years old, the case was decided. By a 5-4 majority, the Nebraska law was struck down, as were all other state laws banning partial birth abortion. The type of abortion discussed above, however, was allowed to remain. Called a D&E (Dilation & Extraction, it is the most common form of abortion used in the third trimester.) In 2003, however, the federal government enacted a Partial-Birth Abortion Ban Act. Late term abortion is still legal in the following states: Connecticut, Florida, georgia, Illinois, Indiana, Maryland, Montana, New Jersey, New York, Pennsylvania, Texas, Virginia, Kansas, and Washington DC.

•even after fetal viability, states may not prohibit abortions “necessary to preserve the life or health of the mother;” •“health” in this context includes both physical and mental health; •only the physician, in the course of evaluating the specific circumstances of an individual case, can define what constitutes “health” and when a fetus is viable; and •states cannot require additional physicians to confirm the physician’s judgment that the woman’s life or health is at risk. •29 states permit abortions to preserve the life or health of the woman

I was beginning to understand just why these women hated me. I was one of a very few voices trying to hold back the tide of termination for fetal defect that was about to sweep our tiny community. Studies at the time had the termination rates for prenatally diagnosed babies with DS at 84%. Somewhere in the innocense of my mind Pre-Ciarra, I had known about abortion. I was already firmly entrenched in the prolife movement. I had been an unwed teen, I had faced a crisis pregnancy. I had read the books, heard the stories, lived the very real fear of an unintended pregnancy. I knew which side I stood on very well, and was determined to continue sharing my testimony with others. More than anything, I wanted other moms who got a prenatal diagnosis to hear my story, Ciarra's story. To learn firsthand that it was going to be ok. I believed that seeing my beautiful child, her smiling face and beautiful almond eyes, would give them pause, as they made their decisions. This was possible. This was do-able. This was a CHILD.

I was walking into the lions den, and I was walking in alone.

Nothing could have prepared me for the brutality of the world I suddenly found myself in. There was no arguing, it was very real, these were the Doctors themselves, talking about how to best kill an unborn child, words like "exsanguinate" and "disarticulation" stuck in my head. I was stunned, disturbed, and horrified to realize that the words being bandied about in court very specifically pertained to children just like mine, just because they were just like mine. I was learning that the words the Doctors used were whitewashed in society as a whole, "Fetal defect", "birth defect", "Prenatal screening" were all acceptable ways to describe the very same things the Drs so bluntly discussed in Carhart: killing babies because they would be born just like mine.

I dove into advocacy, and I dove in completely sure that I could use our experience to show others that there was nothing to fear. I was convinved that seeing kids like Ciarra living their normal lives, would be evidence enough. If *I* could do this, anyone could.

I was wrong. The vile, hateful, cruel words of the women who had terminated and didnt want me to share my testimony followed me. They ridiculed me. They ridiculed my child. They mocked her, laughed at her, and scorned anything positive I wanted to share. I tried so hard to turn the other cheek, but I was falling into a maddening pattern of creating enemies. And no one would listen. The worst part was, the people I entrusted with advocating for my child didnt believe that this issue warranted their concern. They were afraid to take on the "abortion issue", and in shying away, I believe they were tacitly implicit in the genocide to come.

Mostly, I was discouraged. I would tell other parents, "Hey, listen, the abortion rate is skyrocketing. This ISNT about abortion, its about eugenics." I was shushed, defriended, shut out of forums whose very existence was the protection and advocacy of our children. My words were laughed at, in my own community. I begged people to hear me, to take note, to help me fight back before it was too late. Very few people ever heard me, and fewer still were willing to risk their spots on message boards etc to stand with me. I was banned for arguing from more than a few sites. I gained a reputation as a troublemaker.

I was screaming into the wind, and I simply could not wrap my head around the fact that the people who COULD help stop it werent interested. It was too dangerous for them. I was on my own.
I thank God that I was lucky enough to find a small group of like-minded women who saw me at BabyCenter, and not only came to my defense many times, but stood screaming with me. And the kicker was, they werent even parents of kids with Down syndrome. We formed a private board where we went for solace and support. Eventually, in October of 2002,one of them, my dear friend Monica, created a resource for prenatal diagnosis called Be Not Afraid. I was honored to be one of the first contributors to the site. Monica, Shelley, Michele, and I were each others rocks during that time. And somehow, despite all that was against us, we managed to save lives. We were effective, united, and powerful in our ability to share hope.

Still, the Down syndrome community was sitting in the corner with their hands over their collective ears, humming a tune to drown out the maddening noise of the slaughter of thousands of babies around the world as they refused to take a stand. Baby steps were happening, BabyCenter was beginning to see the problem of unfettered access to the pregnancy boards by both extremes. Rules started to be put in place, if you had not given birth to a child with Ds, you couldnt post on certain boards. if you hadnt aborted for DS, you couldnt post on others. The battle lines were being drawn. But privately, I was still ostracized and derided for my determined stance. I wrote letter after letter to the national groups, begging them to take a stand, to do SOMETHING, before it was too late. Just to firmly say "we think aborting for Ds is wrong". To say ANYTHING. They chose intead to stay silent.

Several years ago, I was blessed to become friends with a couple of like-minded ladies on a down syndrome message board. Diane Grover was one of them. Di was horrified at first, to hear the statistics (and they were changing! The current abortion rate for prenatally-diagnosed babies with Ds is now well past 95%!! Think about that. If 100 people were in a room, and 95 of them were brutally executed because we decided we didnt like something about them...what would that say about US?) Di not only heard my anguish, she joined me in it. She saw me standing alone, taking all the heat, aching, crying, hurting..and she stood up with me. She joined my screaming with her own rational, loving, gentle words, and she willed others to stand up, too. She was a fortress for me, a safe haven where it was ok to cry, ok to stomp my foot and demand that people take a stand. Somehow, her quiet demeanor and persistent support caught on. Soon, there was a group of us, standing together, shouting in unison, and it was working.

We eventually decided that we should get more formally organized, and we all put our heads together and chose a name that reflected our great passion and belief in the sanctity of life. Our group would be called The International Down Syndrome Coalition for Life (IDSC).

As Di explains it:
I had long believed that all life was precious. Long before I ever laid eyes on my sweet girl nearly 7 years ago. But something happened after she was born. The moment she was born, the medical staff mourned her as if we had lost her. The silence in the room was palpable. It was broken only by the nurses who told me she would not be able to do this and that. Then one nurse looked at our baby girl, and truly with a pain in her voice said, "Can you believe 90% of parents who find out their baby has Down syndrome abort them?" I think she was thinking out loud, and did not mean to say it. And then the physician that told my husband and I that we were irresponsible, because we could have "done something about this." That was day one.

Because of the lack of support near by, I and others in my area turned to message boards for support. My heart was broken by the reaction of the medical professionals, and the stark reality of that one well meaning nurse. I needed to talk about this, and the prevailing attitudes of the medical community in general, concerning the abortion of babies with Ds. When I would, I was told that it could not be discussed. When I turned to Ds advocacy groups to express the grief I felt by this on the day my daughter was born, I was met with, "We are sorry, we have a position to not have a position." I felt helpless to advocate on this issue. I felt silenced.

Until I met Michelle. Michelle was putting all of the facts and information out there, and I was stunned. I read what she had to say, and tried to work through my mind how this could possibly be happening, and so many people don't know about it, while others will silence those who do from sharing it. Michelle was the teacher, and for those of us who would read the facts that were sent our way, we were the students. She was silenced, but I heard her. In fact, four of us heard her, and together, we acted.

In time, I knew that if we all came together, and calmly shared this information, we could at the very least support each other concerning this issue, and hopefully actually bring it to the attention of the greater masses, and maybe help to prevent this from continuing.

As Michelle said, on that day, the IDSC for Life was born. We all took up, where Michelle left off. She had educated so many, with facts and figures, that still today we try to share so others can see it with their own eyes, directly from the words of those who advocate for decreasing the incidence of Down syndrome. As everyone well knows, there is only one way to do that, and that is through abortion. There is no cure for Down syndrome, so decreasing its numbers is simply not possible any other way.

Over time, we have grown from a few moms believing we needed to stand together, to thousands of people, from all over the world, including self advocates, who are standing together, telling the world that ALL life is precious. We have been joined by some parents who believed the lies and pressure to abort their child for a Ds diagnosis. We are always praying for hope and healing for them, and they join us so they can advocate on behalf of their child that they loss. They will be silent no more.

For that matter, Ibby, Kayla, Kris, Michelle, and I, will also be silent no more. This issue effects all of us. From the moms who live with the pain of professionals pressuring them to abort their baby all the way through their pregnancy, to the mother who did, because she believed the professional when they told her it would be a difficult life, to those of us who are hurt by the implication that we "could have done something about this." the culture of death affects us all. And we will be silent no more.

And so this powerful new group was born. Advocating for all children with disabilities, but especially for children with Down syndrome, Diane, Kayla, Ibby, and Kris have proven that a united front does bring about change. And Monica is on the board, as well, still fighting for every child's right to life.

I am honored to have been a part of the IDSC for Life's conception. I am honored beyond words that a huge part of their outreach is to extend welcoming arms to women who have aborted for DS and regret their decision, who in turn help other women struggling with the choice. I pray that some of the women who will turn to IDSC for Life are some of the very same women who I battled for so long. I want peace for them, and for me. I believe that is possible.

I am hopeful for the future, despite the astonishing termination rates, because finally it is ok to talk about it out loud. I am forever grateful to Di and the others who stood beside me bravely on the front lines, and gave me the ability to step back and regroup while they took the lead. IDSC for Life is a force to be reckoned with, and I hope you will check them out!!

I have spent the last 2 or 3 years sort of out of the battle, licking my wounds, healing. But in the last few weeks, I have realised how much I miss being on the front lines. I have told Di that I am finally ready to rejoin the IDSC for Life, in whatever role they want me. It is time to step back in and become an advocate again. In the words of Justice Scalia:
JUSTICE SCALIA, dissenting. I am optimistic enough to believe that, one day, Stenberg v. Carhart will be assigned its rightful place in the history of this Court's jurisprudence beside Korematsu and Dred Scott. The method of killing a human child -- one cannot even accurately say an entirely unborn human child -- proscribed by this statute is so horrible that the most clinical description of it evokes a shudder of revulsion. And the Court must know (as most state legislatures banning this procedure have concluded) that demanding a "health exception" -- which requires the abortionist to assure himself that, in his expert medical judgment, this method is, in the case at hand, marginally safer than others (how can one prove the contrary beyond a reasonable doubt?) -- is to give live-birth abortion free rein. The notion that the Constitution of the United States, designed, among other things, "to [*69] establish Justice, insure domestic Tranquility, . . . and secure the Blessings of Liberty to ourselves and our Posterity," prohibits the States from simply banning this visibly brutal means of eliminating our half-born posterity is quite simply absurd.
I am optimistic enough to believe in us. And you? Please stand with us, for all life.

For more historical information about termination for DS, and the silence of the advocacy groups, please read Eugenics, American Style

Tuesday, January 24, 2012

Well, hello there!

I have been asked recently about this blog, and my lack of posts the last few years. Yes, life took over and I got sidetracked. I was surprised, actually, at how many people have asked me to get back at it. The focus of this blog has always been Down syndrome, and frankly, I kinda sorta thought that "older kids" with DS just werent that interesting to new parents. Silly me! I remember when Ciarra was small, that is all i wanted to see. It was a window into the world of my future. What was possible? What was scary? Could reading about it make it less scary? It could, it did, and it can.
So, here I am. I promise to try to be a better blogger. And thank you for the many emails, comments, and FB posts that encouraged me to get started again. I am honored to have discovered that Ciarra's story has been encouragement for many people. That makes it worth the time.

I will admit, part of my return to blogging is also this: "you never hear from the olderrrrr kids parents, because their lives are just awful, they are burdened, they arent little and cute anymore and they just stagnate."

Eh, bite me.

It is quite the OPPOSITE, actually. Ciarra's life doesn't revolve around Down syndrome. It lost its big BANG for us, and we just went about living our lives. Sorry to disappoint the haters, but..well, life is going JUST fine...if you count a boy-crazy teen with hormones, a penchant for VERY loud music, video games, junk food, and the quest for a bigger and better social life as "fine".

So, lets update where we are at 13, shall we?
Ciarra is BOY CRAZY. Like, seriously, totally, completely boy c.r.a.z.y. Theres this one little boy she is sure she is going to marry. He, on the other hand, is NOT so sure. But he is: polite, sweet, respectful, and kind. He doesnt mock her or take advantage of her by making her carry his books or do his homework, or anything he might have considered.

Chances are, Ciarra will NOT marry Devin. Chances are also pretty good *I* wouldnt marry MY first crush in school. It is not a tragedy. Its just life. She may get her little heart broken, and yes, it is a little harder to explain the fact that Devin just isnt likely to return her crush. I live in the real world. Devin does not have Down syndrome. Ciarra DOES. While he is a helluva nice kid, he is not terribly likely to fall madly wildly passionately in love with a girl with DS. But he can be her friend, and he is. And he treats her with dignity. Thats enough. For me, anyways. We are working on it with her. And yes, there is ALWAYS the possibility that some typically-chromosomed young man will love her back. (Have you ever seen the movie Mr. Blue Sky? wouldn't that be awesome, amazing, stunning, and totally cool? Living in real life doesnt necessarily mean we dont still have dreams. They're just different dreams.) But reality is, that isnt likely. Is that sad? Maybe a little.

Wouldnt it be nice if life could just be we get to choose the boy we love, and he would love us back, and we would always be exactly, totally everything he ever wanted? Yep. But life isnt like that. and we all...ALL OF US...DS or not...go through the ups and downs of love and heartache. Ciarra is no different. And so we see this as not a tragedy of her not being able to attain her one true love. We see it as a life lesson all of our children will have to learn. Love sucks sometimes. And someday, if you are lucky, you do find JUST that guy, the one you can share a life with and be happy. The one who loves YOU, 47 chromosomes and all. I see that in Ciarra's future.

Just not with Devin. ;)

7th grade has been very good so far. (Can you even believe it? that tiny little girl over there on my sidebar is actually THIRTEEN years old. A seventh grader. Shocking, even now.)
She is included in several classes, plus her "specials", such as Art, Guidance, Music, Keyboarding, and Gym. She had taken the last year and a half off of the regular gym program, and this year, with the success of a GOOD year, has decided to go back to the regular classes. I was very proud of her. It came as quite a surprise, but I think my little go-getter is back on the track of wanting to not take the easy road. I'm sure it is challenging for her. I'm sure it is challenging to her teachers too wink wink. But she is doing it. and I am really proud of her. I'm the mom who doesnt like the easy way out. We fight for Inclusion, and adjust when we need to. But just quitting because it is too hard weighs on me. Atta girl, C!

I minds well get the bragging out of the way.

Ciarra got a 92 average on her report card last semester.

She is THRIVING in Social Studies. LOVES it. They are doing the stock market game. I am told she is in First place. How? Well, she chose her favorite things to base her stocks on: pepsi, chocolate, apple (the Ipad she lives on) and mattel toys. Too funny.

I sometimes wonder what the typical kids parents think when they hear Ciarra is in first place? Is someone HELPING her, or what? LOL. Ciarra's classes are modified to some extent, fewer questions, bigger fonts, open book tests. she is nailing it.

Her teacher, who is amazing, said to me "She isnt just doing ok, Michelle. she is doing AWESOME!"

Honestly, education, inclusion, special education, modifications, all of those words we live with every day..sometimes it is these extra thoughtful kind words that we remember most. I think those words filled my cup more than any of the negative words can ever UN-fill.

Inclusion works! But it is a process that can drain you, beat you up, and leave you wishing for something better...and then leave you high as a kite at how well it CAN work.
Like getting a solo in the school Christmas concert. and singing your little heart out, not necessarily on key but beautifully nonetheless...with a standing ovation afterwards. 7th grade..the year we nearly panicked and quit this school...has been wonderful. Field trips to Mt Kathadin, school dances, laughing with friends....we are blessed.
About the negatives. Yes, there are some. Teaching her to not be too friendly with strangers, to understand the dangers that are out there, and to never allow herself to be a target by showing too much affection, too much skin, or too much openness is a trial. We WANT her to trust, to be open, to love people. But to be safe in a sometimes dangerous world is difficult. Some silliness has happened, such as showing off her new bra to her friend on the bus...omg...we have had to be very firm and very adamant about when and where it is ok to trust.

Also, Ciarra has gotten it into her head that she is a social butterfly, and I am her captain. EVERY day she asks me "Who's coming tomorrow?" Every day. Several times a day. She believes she HAS to be having playdates every day. Someone MUST be visiting, someone MUST be making plans with her. Or she gets lonely. She is downright spoiled in this regard. I dont know many typical kids who have friends over EVERY day. Being that mom that is so overly worried about her emotional health, I about kill myself trying to make it happen. Friends..constantly. Going to the movies, bowling, playdates at the house, bounce place, kids museum...go go go.

I am immensely grateful to have an in home support person who has been with us for years who has no problem going going going with her. 12 hours a week of help. I am SO grateful for it. Thank GOD for Emily! She is young, energetic, funny, and real. She loves Ciarra. They are like sisters, they fight, they argue, and they love one another. And emily, (thank you thank you thank you em), takes her out a couple times a week to help fill that constant need to be hanging with her peeps. I sometimes worry that Ciarra is lonely. The truth is, she has a better social life than *I* do, by far. Emily and I took matters into our own hands and started a playgroup type thing for teens with DS. At least one day a week, a few of them get together and go DO fun things. They work on social skills and speech, and they have fun. And it fills her never-ending need to be social.
As far as friends, she is very blessed in that she has several really good friends who we can count on to go to the movies with or just hang out at home with. A few of them are our friends kids..and there is always the question of if..and how soon..they might outgrow her. It is a reality that sometimes sucks. But yes, while Ciarra still is waiting patiently (NOT!) for Monsters Inc 2, some of her peers are more into "The Devil Inside". I am grateful for her innocense, but worries me. Thank God for several of her friends who have stuck around for the ride since they were tiny. Jade is one, you can see them in the fifth row from the bottom on the sidebar there. She and Ciarra's friendship is for a lifetime. They are funny together. Fight, make up, love, laugh..and make messes. Oh BOY, do they make messes. But we love her. and I love watching their friendship continue over the years.

I also hope that as those years pass, I will remember to keep blogging, keep recording her life story. Not just for her, or for me, but for all the parents who will come along and wonder what it is really like to be a teenager with Down syndrome. This is it. Real life, no whitewashing. The good and the bad.

PS: for those who asked about Jesse and Kristin?

Jesse is currently a Junior in high school, honors, driving now, still playing football. He has a girlfriend we adore (she is FABULOUS with Ciarra!) and a generally great kid. Mouthy, too big for his britches, but calls Mom to see if she wants a tea on his way home from practice...good kid.

Kristin is back in college, studying for a Business degree. She works with children with autism and loves it. She will be 24 this week. She is smart, determined, funny, and strong-willed. She is also immensely patient (thats new!) and as honest as the day is long.

The three of them are not a storybook kind of family. There are no rose-colored glasses here. They fight. Ciarra annoys them. They annoy her. No one treats anyone with kid gloves, they just are very real. she isnt breakable, and they arent, either. Siblings. Love and hate and slamming doors. But they love one another, and I adore them.

And Jim is Jim. Hunting, fishing, working. Loves his family, loves his dogs. Loves to hunt. Jim.

Tuesday, January 10, 2012

Another great contest!

a Rafflecopter giveaway

Saturday, December 31, 2011

RIP dad. I know you loved me, even when life was horrible, and everything got in the way. I hope you are at peace now, with Gram and Gramp. Watch over my family, and please help me find peace myself.