Down syndrome awareness month, let's get this party started!

October is Down syndrome awareness month. I will not be posting every day, but I do have great plans to share some great stories with you from guest bloggers, as well as answering some good questions you sent my way. Of course I will be sharing some extra cute pictures with you of the rascal.

People with Down syndrome are not accomplishing great things. They go to college, hold steady jobs, marry, and live independently. The sky is their limit!

To start things off, I am sharing this great picture of Nichole, because really, the sky is her limit!


Reno


KNOWING ALEX: Life with Agenesis of the Corpus Callosum


This morning, as I was checking my e-mail, I discovered a note to all members of the ACC Listserv--(an Agenesis of the Corpus Callosum e-mail support group that I belong to). This particular e-mail, with a subject line: "Growing up with ACC", put a big smile on my face as I read it, and I couldn't get this blog post up fast enough to share with you here--not to mention get my own hands on a copy of the exciting, new e-book (electronic book).

With his permission, here is the e-mail--directly from him, with the surprising news that I just received, so you can read it for yourself:

"Hi,
My name is Alex Reisenauer I’m 24 yrs old with c-acc. My family joined this list a long time ago and this is my first time posting. After years of thinking about writing a book about what it’s been like to live with ACC and wanting to bring greater awareness about the condition to increase understanding, this month my book, KNOWING ALEX Life with Agenesis of the Corpus Callosum, has come out. I guess you can say it’s taken a life time to write. It’s co-authored by my mother, Cindy and tells how ACC has affected our lives. I have included the description of the book.

BookDescription
Publication Date: September 1, 2012

‘On the day their son was born Rich and Cindy Reisenauer were advised to institutionalize him. Alex had been diagnosed with frightening and unpredictable condition with the indecipherable name of Agenesis of the Corpus Callosum. Simply put, Alex was missing an integral portion of his brain—the band of nerve fibers that connects the two hemispheres.

The Reisenauers chose to take their newborn home to join his two brothers, and face the daily hardships and minor miracles of life with AgCC as a family. Every aspect of Alex’s condition presented developmental, medical, social, educational and vocational challenges. Hard fought for successes highlight his life of achievement.’

Right now its an ebook available at the following retailers: Amazon Kindle,
Apple iBookstore (for iPad), *
requires free iBooks app to view.
Barnes & Noble Nook,
Kobo, Copia and Gardners. It will soon be available at Baker & Taylor and Reader (Sony Reader). A print version should be available soon.

Mine is just one story. I hope as awareness for the condition grows more and more stories will be told until ACC is as familiar and understood by the outside world as other conditions like Autism.
Thank you for reading."
Alex
24 c-acc
 [c-acc=complete agenesis of the corpus callosum]



Would you like to know more about the new e-book titled: KNOWING ALEX: Life with Agenesis of the Corpus Callosum, co-authored by Alex Reisenauer, who has ACC, and his mother, Cindy Mauro Reisenauer?

Well, go ahead and have a look inside the book, where you can view the table of contents as well as read an excerpt.

UPDATE:
If you don't have a Kindle, or other type of e-reader device, but still want to get the e-book and read it--You Can. The e-book is available to read on your computer.

Just download the free Kindle for PC or free Kindle for Mac to your computer. That free download will then allow you to purchase the e-book, KNOWING ALEX: Life with Agenesis of the Corpus Callosum, and have it delivered directly to your computer, for your reading pleasure.

Plus, you can also download other Free Kindle Reading Apps for Kindle Cloud Reader, Smartphones, and Tablets (i.e. iPad & Android Tablet). You don't need to own a Kindle device to read Kindle books.

Wow! I am excited to know that there is a book of this quality, and in-depth information, available that speaks directly about the diagnosis of ACC, and makes it incredibly personal, coming from the perspectives and viewpoints of a mother (and son-who has ACC) team!

Huge congratulations to both of you, Alex and Cindy, on your new book. I can already tell that this book will speak to so many people who read it....from parents who have a child with ACC, to teachers/school staff, tutors, to adults who have ACC, to new parents-to-be who are expecting a baby with ACC, as well as doctors and other professionals and more.

As a parent myself of an 18-year-old son, who is completely missing his corpus callosum, (and as someone who is currently reading KNOWING ALEX: Life with Agenesis of the Corpus Callosum, while nodding my head and relating to much of the story), I am certain that this book will be monumental and instrumental in creating a much-needed greater awareness of Agenesis of the Corpus Callosum, a condition that deserves to be better understood and recognized for the sake of the many people who's lives are affected (in a variety of differing ways) on a daily basis.

Overheard: for the love of hair

Per my request, Adam took the boys to get haircuts this past weekend. We've finally reached the point where Joseph needs more of a "barber" than a "stylist" and I just send the little dudes with them. They sit so much better for Daddy anyway.

It's well known (or I THOUGH IT WAS!) that I have a mad love affair with Cole's hair. It's blond from the sun and water this summer, soft and curly. It's everything a little girl would love in hair, but on a boy. It doesn't hurt that it's exactly like Adam's. After two bald babies (Cami and George... especially Cami!) I have enjoyed his curls.

Besides, when he's being onery, I tell him, "Cole Robert, if it weren't for your big blue eyes and curly blond hair, I would sell you to the zoo!"
My Facebook Page Banner. Note the lovely curls on the right.

So, anyway, I told Adam to get the boys' hair cut. A few hours later, I call him and he says, "Cole's hair and super short now and he looks just like George!"

I think they heard me across Sam's, where Adam was finishing up the weekly shopping. "YOU CUT OFF MY BABY'S CURLS?!!!"

Adam had the gall to laugh at me. "Why, is it a problem? He looks like a big boy now!"

When they came home, I cuddled a sleeping Cole and cried. My older children, who are now longer the favorites and will probably be sold to the zoo, said UNhelpful things like, "He looks like a big boy!" and "You only loved him for his curls!"

Of course, I sobbed at them, "May you have children with beautiful hair and may you know the pain when your husband shaves it all off!"

Camille seemed really annoyed with me. She even said, "You love him the most because he had the most hair!"

"Honey, if the amount of love was based on the amount of hair you had, you would be the least loved child on the planet! You were bald until you were nearly three!" She actually stamped her foot at me and huffed because she's tired (she says) of hearing how bald she was.

Sorry, sweetie, you were an adorable baby but you were REALLY BALD.

Camille at one. Note the lack of hair. She had this much until
was 2.5 years old and grew a Florence Henderson mullet.


I have to say Cole's hair cut is neat and tidy and they did a great job. He really does look like George. I can tell that his hair still has natural curl to it and it looks, in style, color and texture, just like Adam's. But with no curls... well, nothing is saving you from being sold to the zoo now kiddo!

Letter to parents: My kid has cerebral palsy

This morning, Andy and I visited the first graders and talked about cerebral palsy. If you have been reading here, you know that I overheard a little girl talking about Nina, "She was born that way." I talked to her teacher and asked if we could come to class and talk to the kids, after all, it is only natural that they begin to notice differences.

Last Friday, I sent a letter to parents introducing my daughter with Down syndrome. I got a great response from that, so we planned on doing a little presentation on cerebral palsy and also sending a letter to parents talking about Nina and her CP.

Before sharing the letter, I want to thank you all for the thoughtful comments you leave here, and for helping me out. I love your ideas. Milena, thank you! Your idea with the apples was perfect!

Hello 1st grade parents,

Today we had the pleasure to come and spend some time with all the kids in first grade. Two of our daughters are in first grade too. Our daughter Nina has cerebral palsy, and this is the reason that brought us to the class. As Nina’s parents, we are thankful that your children have accepted Nina and embraced her as one of their peers. It is a joy to see children understand that a person is a person, a friend is a friend, and disability is only a small part of who they are. Cerebral palsy is not what defines Nina. Your kids get it, we are so proud of them! 

Nonetheless, first grade kids begin to notice differences and ask questions, it is a natural part of development. Today we spent some time talking about differences, disability, and specifically: cerebral palsy. 

We began our time reading the book, “Rolling Along: The Story of Taylor and His Wheelchair,” by Jamee Riggio Heelan. Taylor has cerebral palsy too, and he talks about his braces, his walker, his stretches, and the independence he gained when he got his wheelchair. Although Nina only gets to use her wheelchair on long trips, we brought it along for the kids to see and we let a couple of the kids roll it back and forth to demonstrate.

We all practiced making our muscles “jump.” When muscles jump they get really tight, and it is hard to move! Nina had a spinal surgery called a rhizotomy, where the doctor cut half of her nerve roots. Now her muscles don’t jump so much and that is the reason Nina can walk independently! It is amazing what doctors can do to help tight muscles.

To help us understand even better, we spent some time with apples. Yes, with apples! There are red apples, stripped apples, yellow apples, and green apples. They look so different, but they are all…apples! Not only are apples different but you can also make so many different things from apples. You can drink apple juice, or apple soda. You can eat applesauce, apple rings, apple chips, or yummy apple pie! These are all so different too! You cannot drink apple pie, but you can drink apple juice. You cannot eat apple soda, but you can eat applesauce! Apples are amazing, but people are even more amazing!

Having cerebral palsy means that sometimes your muscles jump and get tight. Some things are quite a bit harder, like talking, walking, running, and even standing. But  we are ALL different. We all have different hair color, eye color, skin color, some of us are short, and some of us are tall. And these differences are what make us all special and unique. Like we told the kids, “There is only one you!”

If you have any questions, don’t hesitate to pull us to the side or contact us, ellen@ellenstumbo.com. We love to talk to other parents about special needs. Before we had children with disabilities, we knew little about what it was like to raise a child with special needs, and we wish someone had been available for us to ask questions. We are very open, and love to share about our experience.

About the book I read to the kids:


I just recently purchased Rolling Along: The Story of Taylor and His Wheelchair, and I loved it! It does a great job at explaining to kids what cerebral palsy is and how it affects the body. It also does a great job pointing out that Taylor is more alike his twin brother - who does not have CP - than he is different. And this book does an outstanding job at explaining how wheelchair can be so freeing! For any parent struggling to whether to get a wheelchair or an adaptive stroller, you need to read this book!


(The link for the book is an affiliate link. I am not sharing the book only because of that, this is really the best book on CP I have read and I absolutely LOVE it. Great resource, and I want to share great resources with you too! Still, it felt right to let you know)

Charity Begins at Home: Adoption Tax Credit

OK, as you know, I can't stand equating adoption and charity, but the author of the article titled it thus; the Family Law Prof blog reports on a new law review article arguing that the adoption tax credit should be discontinued for international adoptions:
DeLeith Duke Gossett (Texas Tech University School of Law) has recently posted her article If Charity Begins at Home, Why Do We Go Searching Abroad? A Call to Sunset the Portion of the Federal Adoption Tax Credit that Subsidizes International Adoptions, Lewis & Clark Law Review (forthcoming) on SSRN.  Here is the abstract:

Unlike the media frenzy that surrounded Angelina Jolie’s and Madonna’s international adoptions, noted director Steven Spielberg’s adoption of two African American children from the Los Angeles foster care system received very little fanfare. Spielberg went on to establish the Children’s Action Network, a non-profit organization dedicated to finding permanent homes for the thousands of children stuck “in the system” of foster care. He documented their stories and their hopes of someday being adopted. For many, however, adoption is a dream yet to be realized. 

Currently, nearly half a million children reside in United States foster care, some “aging out” without ever having been adopted. Beginning in the 1980s and carrying through the 1990s, Congress passed a series of legislative measures aimed at helping those children in the system. As incentive for placing children in permanent homes, and as part of the Adoption Promotion and Stability Act of 1996, a tax credit was made available for those who adopted children. Since that time, the federal adoption tax credit has risen to as high as $13,360 per child, some years as refundable and other years as non-refundable. 

* * * 

In recent years, international adoption has become the new social trend, fueled by celebrity and evangelical circles alike (although arguably for different reasons), even though a large number of children remain in the foster care system. Children from other countries are now being imported to form the new American families, and those who adopt internationally, whether they receive $13,360, or even $6,000, are receiving the same tax benefits as those who adopt domestically. And while this may add to the diversity of our culture, and provide those adopting with a sense of fulfilling a higher purpose, the very ones who were the intended beneficiaries of the legislation, those “lost in the system,” remain there and are not being helped as the statute originally intended. Because the tax credit should be used to reclaim children from the foster care system — not to subsidize international adoptions — it is time to let the international portion of the tax credit sunset and focus taxpayer resources on those whom the tax credit originally sought to help.
I posted last week about how we adoption tax credit users are part of the 47%. And for an impassioned and cogent argument for why the adoption tax credit should be abolished alltogether, check out this post at Musings of the Lame.

School/Health Issues for Adopted Kids

More on that study I posted about yesterday, this one from U.S. News & World Report:
A school project that requires a baby photo, classmates who tease, well-meaning counselors who say the wrong thing, uncommon medical conditions -- these are just a few of the challenging issues families with adopted children experience in their day-to-day lives.

A new report summing up adoption research shows that the portrait of adoptive families in the United States is changing and so are the needs of those families, said lead author Dr. Faye Jones, a professor of pediatrics at the University of Louisville.

Jones said the research suggests that families would benefit if their pediatricians were more aware of their unique needs -- specialized counseling and emotional support, connections to other adoptive families and tutoring service recommendations, for example. Adoption experts say educating schools and communities would help too.

"The key point is that families and children are going through a lot of different types of adjustments and it doesn't stop when the papers are signed. It's a lifelong process," Jones said.

* * *

As far as health issues, 39 percent of adopted children were classified as having special health needs, compared with 19 percent of the general population. The authors recommend pediatricians offer a roadmap to families -- help them locate any specialists, therapists and medical-equipment providers they might need, even before parents bring their new child home. 
* * *

Family doctors and teachers can ease communications with adoptive families by learning to use terms like 'birth parents' and 'biological parents,' and not saying 'real parents,' Goldwater said. Teachers should also know what might trigger a youngster's anxiety.
"An assignment that requires a baby picture can be traumatizing for a child who has no photos of herself as a baby," Goldwater said. Family-tree projects and Mother's Day may also spark deep emotions.

"Getting teachers to be aware of how they talk about family, what kinds of language they use, what might be embedded in their curriculum that might be difficult is important," she said. She recalled one family whose daughter, adopted from China, "fell apart" in school one day when her class was reading a textbook that described how baby girls in China are sometimes abandoned or given to orphanages.

 

Coming clean on the word disability

































I think my best writing happens when I most don't want to write about a topic.

Perhaps that's because it gets at my own ambivalence about the topic and my desire to mask that vulnerability by remaining silent. It means I'm confused and I don't know exactly how I feel. All I know is that the received wisdom on the subject doesn't sit well with me.

Today that subject would be use of the word disability.

Outside of my work at Holland Bloorview, I find I rarely use the word in conversation with people and in particular with my son Ben, who has many diagnosed disabilities. In fact, I can't remember when I last spoke about disability with Ben. A part of me thinks that I "should" be talking about it on a regular basis with Ben, to help him become a better advocate for himself.

But the truth is that in our everyday life I don't see Ben as disabled. The first quality that comes to mind when describing Ben is not disability. I see him as different, yes. Challenged by unusual and grossly unfair circumstances, yes.

I also see him as he defines himself -- as smart, funny and gentle.

I don't reduce him to what he isn't -- "lacking" in ability or the "opposite" of able, which I think is the most common mainstream use of the word disability.

In the disability community we tell ourselves a story about the word disability. We tell ourselves that it used to be a word used to oppress our loved ones, but that disability activists have claimed ownership of it and freed it from its earlier connotations.

We tell ourselves that when people hear the word disability, they don't conjure up an image of lack or loss.

That may be true within the disability community (though we still tend to view certain types of disability as more okay than others) and in places like Holland Bloorview, which have a disability-positive culture.

But when I read mainstream news or follow generic parenting blogs, I see a narrowing of who is valued and who isn't in this society. I see a rigidly-held concept of what it means to live a "productive" life and what is needed to get there, not a flexible one.

I see a culture that places more value on individuality, conformity and competitiveness than community, diversity and collaboration -- though companies and groups launch convincing PR campaigns to suggest otherwise.

I do not see an opening or shift in how people view the word disability when attributed to a person.

I see a culture that is quick to judge people as "deserving" of their situation in life. If I'm a success by Western standards it's because I worked my butt off. And if I'm not, it's because I was lazy. Most people still operate under the fairy-tale illusion that we start off equal in life.

A couple of years ago I led a workshop on how to write about disability. As I put my slides together, I remember feeling torn. Two of my directives seemed contradictory. On the one hand I told people to use neutral language devoid of value judgment: "Stay away from words that elevate people with disabilities to superhuman (saint) status or suggest they're less than human, tragic (abnormality, defect, victim)" I said.

On the other hand I gave them the seal of approval on use of the word disability. I told them that disability is the preferred descriptive term.

But there isn't anything neutral about the word dis-ability. The word "dis" is described in the Oxford dictionary as "expressing negation" or indicating "reversal of a state."

Who wants their human identity to be summed up as a negation of something?

My other son has attention problems. He hasn't been formally identified as having a learning disability, but he takes medication to improve his focus. Last night when I sat in a therapy session with him the counsellor referred to his "learning disability" while we went through a psychological assessment. I don't think he's ever heard his attention problems classed as a disability before. And I had to wonder how that sat with him.

In his head, was he thinking: "I have a negation of the ability to learn?"

No, he wouldn't know the dictionary meaning of the word "dis," but he'd know intuitively that it was bad. When you diss someone or something, you put them down, right?

And if we were judging the precision with which the term "learning disability" allows you to envision how a specific child's mind works or how they live in the world, would you give it an A?

It's the same when applying the word disability to a physical or developmental disability. It tells you almost nothing about the package of qualities that is that person.

Sometimes it will hit me when I'm doing an interview, how clunky, inadequate and biased the word disability is as a descriptor. I'm so used to letting the word roll off my tongue that I don't hear it the way the average person does -- the way people outside our community do.

And I'll catch myself feeling stupid when I ask someone to comment on something related to "kids with disabilities" -- as if this diverse population of human beings could be lumped into a separate species.

Disability in the common vernacular is about what isn't -- it's the absence of something that our culture has deemed good.

It would be as limiting and non-descript as saying I was non-male or non-hair (I have alopecia) or non-young. It doesn't say anything about who I am.

Recently I wrote to Xavier Le Pichon, the French geophysicist who helped create the field of plate tectonics. Contrary to popular Western conceptions about what makes a person human, Le Pichon believes that fragility and empathy are our defining traits. While developing his scientific theories, Le Pichon lived in the original L'Arche community for people with intellectual disabilities. His children grew up there.

"Our culture views disability as a loss, as taking away an essential part of a person and diminishing their value," I wrote to Le Pichon. "How do you view disability based on your time living in L'Arche?"

"In L'Arche, I do not think of...persons as having disabilities," he said. "They are just friends. I consider some of them as being the closest friends I ever had. When you love somebody, you do not think of him as having disabilities. He is what he is. That's it."

It reminded me of when I visted L'Arche in France in the summer. When I asked questions about people with disabilities there, I was met with a blank look. Just who was I talking about? Was I really that coarse and simplistic in my use of language? At L'Arche they don't use the word disabled. It isn't in their lexicon.

I get that in order to acquire funding for the services our kids need, they must be categorized.

But on a personal level, I don't think the word disability plays a big part in many family's lives. I think families are more focused on what their child "is" -- which is immense and can't be quantified in words -- not what they aren't.

From Down Syndrome to Cerebral Palsy - An Adoption Story



I would have never chosen to be the mother of a child with special needs. Nonetheless, our second daughter, Nichole, surprised us with an extra chromosome and a diagnosis of Down syndrome. Dealing with her diagnosis was extremely difficult. All of sudden I had become the mother of a child I was not prepared or ready to parent. 

Yet, something significant took place during those first few months. I began to connect with other moms that had children with Down syndrome. These moms offered me courage, they gave me hope, they allowed me to dream big for my child. Nichole’s diagnosis of Down syndrome became a part of who she was, and not what defined her.

As we navigated the new world of special needs, we learned of the fate of children with disabilities in other countries. It broke our hearts to know these children were not valued in their cultures, and they were sent to orphanages and then mental institutions at the young age of four or five years old. We could not imagine life without our Nichole, and she had already contributed so much to our family. Her life had great value, it had meaning, and it was hers!

When we were ready to add another child to our family, we began to consider adoption. And not just any adoption, but the adoption of a child with Down syndrome from Eastern Europe. As we searched the many faces of beautiful kids with Down syndrome, it was the face a little girl with cerebral palsy that caught our eyes. Her diagnosis, however, scared me. I realized then how comfortable I was with Down syndrome, and how well it “fit” with our family. Cerebral palsy on the other hand, seemed daunting, difficult, maybe too much. 

I am guest blogging today at www.special-and-determined.com, click HERE to continue reading!

Disclaimer: I did not write the snippet about the adoption organization mentioned in the post (although we did use them when we adopted Nina) this was written by the blog owner.

Pediatricians Need to Support Adoptive Families

From Medicalxpress:
As more children are adopted each year, pediatricians must be knowledgeable about adoption issues and model positive language for adoptive families, according to a clinical report published online Sept. 24 in Pediatrics.   

Veronnie F. Jones, M.D., Ph.D., and colleagues from the American Academy of Pediatrics Committee on Early Childhood and Council on Foster Care, Adoption, and Kinship Care, examined the role of the pediatrician in supporting adoptive families.

The researchers report that approximately 120,000 children, representing 2 percent of the U.S. population, are adopted every year. The role of pediatricians may start with reviewing preadoption health records to help families assess the health needs of children they plan to adopt. The pediatrician can help parents decide how and when to communicate about adoption with their children. They should introduce adoptive parents to available resources and provide support for parents during the child's developmental understanding of adoption. Pediatricians should be encouraged to model positive adoption language for adoptive families. This effective communication is key in promoting the long-term mental and physical health of adopted children and their families.

"As more children each year become part of permanent families through adoption, it is becoming increasingly important for pediatricians to be aware of and knowledgeable about adoption," the authors write. "Pediatricians play an important role in helping families deal with the differences, the losses, and the many other issues surrounding the adoption of a child."

You can read the whole article in Pediatrics magazine.

Attack of the giant moths!

Okay, so maybe they aren't giant but we have moths! Ew!

I've been sorting clothes to sell, donate or toss for about a week now. It is slow going but we are going. I needed to see what the little boys needed for winter and once I got into the bins of clothes, I decided I might as well go through everything and pull out what I don't like, they won't wear and so on.

I pulled down Joseph's old clothes and reached in to pull out a shirt. I realized that a plastic decoration on the shirt was gone and thought that it had melted in the wash and I didn't know. When I pulled out another shirt, I realized they were moth-eaten! I quickly put the whole bag outside, pulled out what I knew wasn't worth saving (thankfully, only a few pieces) and tossed everything else in the wash!

I am so glad I realized that we had moths before I packed away the sweaters my mother made the kids! Someone told me to get the lavender dryer sachets from Trader Joe's and to pack those with the clothes to keep the moths out. Since four of them are 3-4 dollars total, it went and bought some. It's worth it to keep the moths out of our clothes!

HUGE apology!

Tonight I learned a lesson about embedding youtube videos. And it was not a pleasant lesson! First of all, please know that I would never post a Lady Gaga video. In simple terms, her lifestyle and choices are not compatible with my lifestyle and choices. I apologize if any on you clicked on the video and were offended!

So, this is the lesson I learned today: when you embed a video on youtube (and because youtube is getting so "smart") make sure the video is not part of a "playlist." IF the video is part of a playlist, whatever code you get for the video you are watching is most likely not the the code that correlates to the video, but rather the code for the first video in the playlist. In the case of the video I posted, I suppose this particular video was a part of a "playlist" with several "I was born this way" by Lady Gaga videos. So when I copied the code, I did not realize I was getting the first video in that playlist and not the one I was watching.

In my last post I share some girls at school were talking about Nina, and I heard one say, "she was born that way." Lady Gaga's song kept playing in my mind after that comment BECAUSE I had watched a flash mob dance comprised of children and adults with disabilities singing and dancing to this song. It was sweet! People with Down syndrome, Cerebral Palsy, and other disabilities performing at a mall. THAT was the video I always intended to show!

I fixed the code, so it's all good. Still, if you clicked on it and were shocked (and believe me, I guarantee you I was even more shocked, I was mortified!) I really apologize. A mistake I hope I never make again!

She was born that way

This morning, as Ellie, Nina and I walked to school, I saw a group of second-grade girls gathered around, talking, and looking at Nina. As we approached the group, I overheard one say, "She was born that way."

I was not sure how to respond. I was not offended, it didn't bother me. At that age, kids are learning about their world, and what makes us all different. And yes, Nina was born this way. There is nothing about her Cerebral palsy she can change or make different. Yes, she was born this way.

Last Friday, I sent a letter to all the parents that have kids in Nichole's class talking about her Down syndrome. Last year, I even went to her school on Down syndrome day and gave a school wide presentation about Down syndrome. I also sent a letter home with all the students.

I had already talked to Nina's teacher about coming to her class, and reading a book to her classmates about Cerebral Palsy. This is the time I am planning on sending our "introduction" letter. But the experience form this morning is making me think I need to go to all the classrooms and talk about disability, and Cerebral Palsy. Because yes, Nina, and Nichole, were born this way.

Dad's age a small risk factor in autism

I was concerned about this study's impact on how our culture views a parent's role in “causing” disabilities like autism. So I was pleased to interview Dr. Evdokia Anagnostou and learn that while helping us understand the jump in autism rates in a large population, the study does not identify father's age as a major risk factor in individual cases. Louise

Father's age linked to autism risk, but overall risk is small

Men in their 40s are more likely than those in their 20s to father a child with autism or schizophrenia, but the overall risk is still low – about two per cent – according to a study published online in Nature last month.

“The majority of babies born to 40-year-olds are healthy, but the study helps explain some of the increased risk in a huge population – which helps explain some of the rise in autism rates in the last couple of decades,” says Dr. Evdokia Anagnostou, a child neurologist who leads a clinical program in autism research at Holland Bloorview.

Researchers in Iceland examined genetic material from 78 parent-child trios, where parents with no signs of mental illness gave birth to a child who later developed autism or schizophrenia, and a control group.

They found that as men aged, they transmitted more random mutations to their child at or near conception. The average child born to a 20-year-old father had 25 mutations linked to the father. This increased by two mutations a year to reach 65 for children of 40-year-old men. The mother’s age had no impact on risk.

“Lots of random genetic changes happen with age and the majority mean zip,” Evdokia said. “It’s the rare ones that lead to syndromes like autism.”

However, the more mutations a child has, the more likely he or she is, by chance, to have one of the rarer, disabling ones.

The study is important because it helps explain the biology of autism, which may aid in treatment. “If we understand the pathways from genes we discover we know where to focus our efforts.”

Evdokia emphasized that autism is “a multi-factorial disease that can’t be prevented at this point. Paternal age can now be seen as one of many contributors to risk – but it doesn’t explain the majority of risk.

“There are many, many reasons why you may end up with a child with autism and if the father is older the child gets this extra little hit. But most of the time a child needs to have many hits to get autism.”

Other factors that increase risk include a father's genetic makeup, such as having a sibling with autism; the fetal environment, including infections during pregnancy and exposure to fertility drugs; and possibly some environmental toxins.

“Some kids will have enough of a genetic hit to cause autism and some will have a genetic risk that interacts with one or more environmental factors.”

Evdokia said that the study is helpful in explaining the increase in autism rates in a huge population – but doesn't identify father's age as a major risk factor in individual cases.

“If someone asks me ‘Do you think I should not have a baby because I’m 40?’ I would say you absolutely should have a baby. The majority of babies born to 40-year-olds are perfectly healthy.”

In addition to improving our biological understanding of the disorder, Evdokia hopes that studies like the Nature one focus research on “the real reasons for autism – so people don’t get stuck theorizing about things like vaccines or power lines, for which there is no evidence.”

Cooling off

I think I post something like this every year- it's fall, ya'll or something similar. Truth is, I love the lazy days of summer. I love having my kids underfoot, spending all day at the pool, VBS and grilling. I do NOT love the heat, which means that, overall, the Summer of 2012 kinda bit. Alot.

We had several months of no rain and if it did rain, it was a Little drizzle that lasted a few moments and didn't sink into the parched earth. The kids and I had cabin fever because it was too hot to go anywhere but the pool. With a 3 year old who is nervous around water and a 2 year old with no sense of self preservation the pool was far from relaxing. (For me, that is. My older two became little fish and it was awesome to see them become great swimmer!)

It's finally under 100 degrees here. The nights and morning are fairly cool. Right now, I have the fans off, something that was impossible a month ago. George has been pointing out all the pumpkins at the grocery store and I dragged out our fall/Halloween decorations. I even bought a can of pumpkin and cinnamon chips to make pumpkin muffins.

That is, I'll get baking as soon as I get over this stupid cold/allergy attack thing I have. I have no idea what it is but I have been sniffling, snorting and sneezing for two weeks now. My husband says it is allergies. I say the stupid allergy medicine isn't working. My doctor says I have a virus. I say I am tired of sounding like a foghorn and with all the vitamins I take, I shouldn't ever get sick! Bah. Whatever it is, I finally broke down and made myself some comfort food: hot tea with honey and white rice with butter.

(When Adam saw what I was making, he said, "You don't feel good, do you?" Gee, thanks for listening when I have been telling you this for two weeks, honey!)

Thankfully, the kids seem to be mostly immune to whatever I have. Joseph and Camille are enjoying playing outside until bath time and helping Adam get the garden ready for winter. Cole, George and I are spending out time at the petting zoo and various playgrounds. I'm slllloooowwwllly deep cleaning the house for winter, which includes cleaning out the kids bedrooms. The basement and various books shelves have vomited all over my dining room table as I sort items for donation/selling/tossing.

Speaking of which, my younger two are plugged into the TV so I should go unearth the floor in Joseph's room....

Noah in Times Square

Noah was one of the kids featured in a video by the National Down Syndrome Society that aired on the Jumbotron in Times Square Saturday as part of the New York City Buddy Walk.

I think you should talk about...

Down syndrome awareness month is just around the corner. October will be here before we know it! As I begin to plan and prepare, I was hoping to get some feedback from you!

Do you have any questions specific to Down syndrome? I would love to hear those?

Any questions about Nichole? Her development? What her days look like? I would love to answer those questions.

Is there something you think I should cover in regards to what it is like for us to have a child with down syndrome?

And lastly, if you do have a child with Down syndrome, I would love to have you guest post!

Thank you! I always appreciate all the input and ideas I get from you.

Menu/recipes: Smoothies

I normally do not do smoothies. Green smoothies are all the rage and I just cannot drink something that is GREEN or tastes like pureed spinach. In fact, cooked greens are one of the few foods I will not eat. In a salad, fine. Cooked in something? No. No way.

But I need the benefits from them, so I finally managed to make a "green but not in color" smoothie. I use a knock off Magic Bullet which works great, even if it is loud and slow. Yes, it's a pain in the rear to drag everything out of the fridge and make it but it's good for me and with two medical professional breathing down my neck to loose weight... yeah.

I suppose I shouldn't have eaten a donut with this, though, huh?

In your Magic Bullet, blender, food processor or whatever, put:

a handful of kale
1-2 cubes of Trader Joe's green juice. (I buy the bottle, freeze the juice in ice cube trays and then put all the cubes in a baggie in the freezer)
1-2 tablespoons of plain greek yogurt
1 tablespoon flax seed
1-2 tablespoons frozen OJ concentrate
frozen mixed berries- blueberries, raspberries, etc. This makes the smoothie NOT green!
almond milk

Blend together. When it is well blended, add more almond milk, if desired, and blend until smooth. I have also need know to add the "leftover" pureed fruit from Cole's fruit pouches. This adds a but more fruit to the smoothie and the pouch doesn't go to waste.
God is always there........


Our sweet little girl is 2 1/2 months old now. I can't believe how time flies by! I think about her every single day and how she was such a wonderful servant of God in letting him use her to do such wonderful things. I never knew someone so small and so young could have such an impact. Recently Tiki (that is what all of the kids call my sister) celebrated a birthday. On the eve of her birthday I was at a mom to mom class enjoying time with other moms and learning new stuff to apply to my life. After it was over a dear friend came up to me and said that the "Hidden Treasures" (special needs) group had received a donation in memory of our Mary Martin! I was so excited! The fact that 2 months later people are still thinking about her and wanting to honor her is such a blessing. She went on to explain how they were going to use that money. They had planned a cook out with the group and wanted to use the money to purchase necessary supplies that were needed. The cook out was going to be the next night...........on Tiki's birthday. I just started crying. No one involved with this knew when my sister's birthday was, and even if they did the chances of them planning something like this directly around her birthday was very unlikely. I always like for my children to give Tiki a little something for her birthday, whether it be something they made, wrote, or some random thing they wanted to buy her.  Mary Martin can't do any of that, but God made sure that we knew how very powerful he was. With the help of God Mary Martin was able to give her Tiki a gift from heaven. Through everything that I have been through I have learned to trust the God of the more when life gives me less. I have claimed to have trusted in him before, but I now know that I hadn't been. When you focus on God he will focus on you. These tiny gestures are such blessings to me. I called my sister that night crying and told her about it. I didn't get to see her on her actual birthday because both of us had to work. I remember before my birthday in August, the only thing I wanted was for our blog to reach Africa. Out of all the places in the world I have no idea why I chose Africa. I remember praying so hard for God to make it happen. All that I have been through please just give me this one thing, and it didn't happen. I'm not going to lie I was a little disappointed. God can do anything, why would he not do this for me? I didn't dwell on it, instead I started re-evaluating and refocusing my life. On September 20th my sister turned 31 years old, and that is the day that I realized that our blog had been viewed over ten thousand times! That is huge!!! And then I saw where one person had viewed it from Tunisia. Where in the world is that? Of corse I had to google it, I'm not good with countries and continents! It is the smallest country in NORTH AFRICA! We made it to Africa!!!! And then it hit me, my sister has done missions in Africa before. It has been 8 years since she went, and maybe this is God's way of saying "Hey Tiki, Africa misses you." He knew that she needed Africa more than I did and he wanted her to have it instead of me. Sometimes we pray for things not realizing that we don't need it, we want it, but someone else out there needs it more than we do. God is more than amazing and shows it every single day. I have been blessed more than I deserve. I thank God every single day for not giving up on me and for always loving me!! God is good!


Adopting a Kid, Not a Cause

From the Her.meneutics blog at Christianity Today:
There are three bad things that happen when we emphasize the missional aspects of adoption while minimizing our longing for children.

First, we marginalize those women, our sisters in Christ, who suffer the trial of infertility and who pray month by month for the Lord to open their wombs . . . and we’d do well to remember that the Lord often received their plea for children with compassion. Their desire is not inferior in his sight.

Saving the world one adoption at a time also risks objectifying our children. Adopted children are no longer allowed to be simply kids. They become involuntary ambassadors for a cause.

I live in Mississippi. I am the Caucasian mother of two black children. But my children were not adopted to be overtures of peace in a racial reconciliation campaign. One of my children came from a continent where a child dies every minute from malaria. But he is first and foremost my child, not my personal platform for children’s health initiatives. . .

Finally, when Christians focus on response to a need—the number of global orphans, the bleak future of older orphans, and so on—we encounter a third problem: a false hierarchy where some adoptions seem more worthy than others. For example, there’s a sense in the adoption community, to which I belong, that couples who adopt international, special-needs kids are doing something more valuable than couples who adopt same-race, healthy infants. By ignoring our common joy in family, adoptive parents often lack mutual respect for one another.
My problems with adoption-as-a-cause include this author's number two problem -- objectifying our children, making them "involuntary ambassadors for a cause."  But I have other problems with it, too, as I said in a post entitled What's wrong with rescuing orphans?:
The first problem -- gratitude.  Have you ever heard the old saw that a man ought to date a homely woman, since homely women are likely to be grateful for the attention?  It's an ugly suggestion, isn't it?  And we can all look at such a relationship and see it as inauthentic, exploitative, unhealthy.  Any relationship where one person feels superior and the other is expected to be grateful is completely corrosive.  Talking about adoption as the rescue of needy, pitiful orphans by white knights on white chargers sets up that same unequal power dynamic.  Feeling inferior is profoundly damaging to self-esteem, identity, human dignity. I think it's not just damaging to adopted persons, but to adoptive persons, too.  Feeling superior does terrible things to your character, too.
And the suggestion is that, like that homely woman, the "rescued" adoptee should be grateful for everything that everyone else gets to take for granted. 

* * *
Which leads me to a second problem with "rescuing orphans" -- ends justify the means.  Movements can be world-changingly positive.  They can also be dangerous.  Sometimes when we focus on the great need of orphans to be rescued from deplorable conditions, we start to believe that ANYTHING we do to cure this great wrong is justified.  We don't stop to ask if the children are truly orphans or if they have extended family who can care for them, or if they truly need to be adopted. 

* * *
A third problem with adoption as rescue -- it won't work.  Let's face it -- the "orphan crisis" we hear about, the 132 million or 147 million or the 163 million orphans around the world (those are UNICEF numbers, but they don't really represent true orphans), will not be solved by adoption.  Even if we successfully placed all 163 million orphans in new adoptive homes, the conditions that produce orphans -- war, poverty, illness, gender inequality -- would keep on churning out orphans.  The ONLY way to resolve the orphan crisis is to work to end the conditions that cause kids to need out-of-family care.  The orphan crisis will end when we take care of vulnerable FAMILIES.
* * *

A final problem I have with the rescue theme is that it is often presented as a uniquely Christian obligation to adopt orphans. .  .  .
And once adoption becomes a uniquely Christian obligation, we start excluding suitable adoptive parents based on some Christian beliefs, having the perversely opposite effect of making it harder to place orphans.  Gay and lesbian parents, unmarried couples, single women, Muslim parents, atheist parents, parents considered insufficiently Christian or the wrong kind of Christian, just won't do, it seems, when we see adoption as a Christian mandate.

There are lots of churches and organizations and individuals, Christian and otherwise, who are doing great work in caring for orphans.  I applaud their work, I donate to such organizations.  But caring for orphans and adopting children are two different things.  I don't confuse my charity work with the adoption of my girls.  I wish the rest of the world would keep the distinction in mind, too.