Who Will Win Today? and CP Connection # 3

Who will win today? This is a question I started asking Nina. Is Nina going to win, or will Cerebral Palsy win?

It is like Nina is in a boxing match against her CP. She swings her little arms hoping to punch her CP, but sometimes CP comes at her with  a fierce vengeance that knocks her down.

Nina started walking with no braces, just her bare feet. This is really great progress, it means she is getting stronger and balancing better. Without her braces her left foot pops up and she walks on her toes, but she is walking, and that is always good! Actually, it is great!

The puzzling part is when she does great and the next day she just cannot do it. She gives up, she believes it is too hard, even if she has done it 10 times before. So, in an effort to try to encourage her, this is an example of a conversation we might have:

Me: Who is in charge of your body? Cerebral Palsy, or Nina?
Nina: I don't know.
Me: Can Cerebral Palsy walk?
Nina: No
Me: Can Nina walk?
Nina: Yes!
Me: So who wins, Cerebral Palsy or Nina?
Nina: Me! I can walk!
Me: Yes! And Cerebral Palsy cannot stop you from walking! It tries to stop you, but it can't! We are beating Cerebral palsy, we are winning! We are showing it who is the boss of you!
Nina: I am the boss of me!
Me: So every time Cerebral Palsy wants to stop you from doing something, you need to show it who the boss is!

I am not sure how this approach will work, but the more we can get her to take ownership of her abilities, the better and better she will do. We don't want CP to be something she sees as her "enemy" but we also do not want her to be beaten by her disability. She can do anything she sets her mind to, and slowly, we are making progress. So the last few days as Nina has been taking independent steps without her leg braces, it is encouraging to see that. Slowly, slowly, she is showing Cerebral Palsy who is the boss of her body!

I would love to hear from young adults and adults with Cerebral palsy. is this an okay approach? I do not want her to be resentful of her CP, but I want her to take ownership of her abilities. What would you advice?








Linking up? Don't forget to link to a specific post and not your entire blog. If you visit the other blogs, maybe you can leave a comment and let them know you stopped by. And don't forget to add the blog button so you can link back here. You can always click HERE for a more detailed scoop.

Adoption & Abuse

Sometimes it's HARD to decide what to blog about.  My usual problem is not finding something to post about, but in deciding what NOT to post about.  Believe it or not, I don't actually blog about everything that crosses my mind or my computer screen, though some days I know it seems I do! 

I've been trying to decide whether to post about an article, which is a followup to something I posted about before, but couldn't decide if it was "new" enough to bother.  And I admit, I'm sometimes leery about posting on topics that annoy readers (doesn't always stop me -- UNICEF, anyone?!), and this one seems to. But when a recent news story caught my attention, I figured I needed post again on the topic of adoption and abuse.  It is important enough.
Remember a while ago I posted about the spike in reported cases of starvation abuse of adopted children in Washington state? The article noted that the state was appointing a study group of experts to study the issue of child abuse in adoption, to determine whether there is a link between adoption and child abuse, what causes it, etc.  I think the unanswered questions are important enough to report this followup that lists the questions the group will be trying to answer:
  • Are neglect and abuse, including withholding food, on the rise? And are they more prevalent in adopted homes?
  • Are changes needed to foreign or cross-race adoptions procedures? Or in the foster care adoption process?
  • Do child welfare agencies maintain adequate long-term data on adoption outcomes?
  • Does a push to have more foster children adopted sooner created risks to child safety?
The story that made me think I should post these questions?  This one about the death of a child at the hands of her prospective adoptive father:
A Fort Drum soldier wounded in Afghanistan in 2009 admitted Tuesday that he killed a 4-month-old girl he and his wife were trying to adopt by banging her head against a hard surface and throwing her into a crib.

Jeffrey Sliker, a native of Middletown, R.I., could get 15 years to life in prison at sentencing on March 14 — almost a year after his arrest at the couple's home near the military post in northern New York.

Sliker, 23, pleaded guilty to second-degree murder in the death of Laurne Clark, also known as Mollie Sliker, who was found dead with a head injury after Sliker's wife alerted authorities.

Prosecutor Cindy Intschert said Sliker told the judge "he had had very little sleep, he was getting ready for work, the child was crying and he became frustrated."

* * *

Defense attorney Sheila Crowley said Sliker was diagnosed with traumatic brain injury and post-traumatic stress disorder.
The most important thing now, I think, is to figure out what we can learn from these cases to try to prevent them in the future. 

Yes, I know biological parents also abuse children, so it can't be exclusively an adoption problem. But what can we do in adoption -- better screening? better preparation? better post-adoption support? -- to prevent abuse?

I think the study group, which expects to issue a report in May, is asking the right questions. What other questions do you think they need to answer?

Calling All Cerebral Palsy Bloggers February 1st

Tomorrow, February 1st, will be our third CP Connection. In an effort to connect our Cerebral Palsy community through blogging, we link up with a blog post the first day of every month.

Who links up?
Anyone that blogs about Cerebral Palsy. Do you have a child with CP? Are you an adult with CP? We would love to have you join in and share one of your blog posts with us!

What should I blog about?
It doesn't matter what your blog post is about, as long as it has something to do with Cerebral Palsy.


Do I need to write a new blog post every time there is a link up?
You can if you want, or you can link up any blog post you have written in the past.

What are the rules?
1. Write a blog post.
2. Add the "CP Connection" button at the end of your post (so that it links back to the other blogs and we are all together in one place) The button code is on the right side-bar. 
3. Link-up your post (not your blog site, but the specific post)
4. Visit the other blogs and if you have the time, leave a comment on their post.

HERE is a more detailed post with the scoop on how this works.

Hope to see you link up tomorrow and spread the word!

Vote for Busy Bodies!

A seven-week program designed to get young kids with disabilities hooked on fun, physical activities is vying for a $50,000 grant from the Maple Leaf Sports & Entertainment Team Up Foundation Fund.

You can vote for Holland Bloorview's Busy Bodies program today and everyday until Feb. 20 (click on View the candidates, then click on Holland Bloorview Kids Rehabilitation Hospital Foundation).

Research shows that children with physical disabilities take part less in social, recreation and physical activities than peers.

Busy Bodies gets kids with disabilities aged seven to 12 out once a week to try creative dance, yoga, sledge hockey and wheelchair basketball.

Read about the difference the program made in Cassidy's life (above).

Then vote!

Special Needs Adoption From China

The Chicago Tribune has a story today on China's Waiting Child program:
When Megan and Keith Nakamoto started the China adoption process in 2005 they knew they could be in for a wait. Three and half years later, the Lincoln Park couple decided to switch from the traditional Chinese adoption program and adopt a special needs child.

"Who knows? We probably still would have been waiting. It's almost like you see this goal and you want it so badly, but it gets harder and harder and you think it's not going to happen," said Megan Nakamoto, 48, who welcomed her daughter, Tessa, in 2010. "We switched to the special needs program, and then you have a new hope. Then, it's scary all over again because you're adopting a child with special needs."

Experts say more families are choosing to adopt special needs children through China's Waiting Child program, which releases children with minor and significant health issues in as little as a year. Adopting a healthy child from China took one year to 18 months in 2006. Now it can now take more than six years, straining both prospective parents' patience and pockets.

"I think now the biggest change we're looking at is that there are families who are willing to adopt special needs children. That really is the wave of international adoption," said Bob McNeill, an adoption worker at Sunny Ridge Family Center in Bolingbrook.
In China, international adoption for special needs kids is about the only option for permanent family.  Disabilities are considered curses on the family, and is the primary reason for abandonment of special needs kids.  They are, because of that stigma, highly unlikely to be adopted domestically in China. Sometimes, adoption to a Western country is the only way for the child to get needed medical treatment since China puts only limited funds for such treatment in the hands of orphanages. So it's a good thing, isn't it, when internationallly adopting parents choose the special-needs program over the non-special-needs program, right?

One of my perpetual concerns about special needs adoption from China is that folks might be more interested in getting a child quickly than in actually parenting a child with special needs. The desire to "jump the line" by switching to special needs may not be adequately thought out. Prospective parents might be overly optimistic about what special needs entail.  I'll hear prospective parents say things like, "It's just albinism;" or "It's easily corrected with surgery."  Really?  Did you know that albinism comes with an increased risk of congenital heart problems?  Did you know that cleft palate repair might involve a series of surgeries, not just one?  Did you know children with cleft palate often have hearing problems? Have you thought of how you will facilitate attachment when you immediately subject your newly-adopted child to painful surgery with a recovery period that will have you saying no to them frequently, preventing them from touching their mouths, denying them certain foods?

Of course, lots of parents handle special needs like champs.  But are the "line jumpers" really prepared? Does the family have the time, money, health insurance, ability to take off work, emotional wherewithal to handle special needs?  Consider this post about remarks Amy Eldridge of Love Without Boundaries made about unprepared special needs adopters:

Amy also said that adoptive parents need to be prepared before adopting. When they have seen disruptions of adoption in China -- where adoptive parents decide not to go through with a special needs adoption even before returning home -- it's usually because they have not been adequately prepared. She received a call from a family who had switched from the NSN program to the special needs program to adopt a cleft child who had been an LWB child. LWB had repaired her lip, though her palatte repair needed to be done when she was older. Amy knew the child was perfectly healthy, chubby, interactive -- everything you'd want from a institutionalized child. The dad said to her, "Do you know that when she drinks her bottle, milk comes out of her nose?" Duh, yes, Amy knew that and the family would have known that if they had read ANYTHING about cleft-affected children. 

I'm also bothered that those with potentially the least resources -- single parents -- only have the option of special needs adoption from China.  Yes, I'm a single mom and I'm handling two kids.  But given the fact that I'm the only wage-earner in the house, making it difficult to take off for long stretches of time to care for a special needs child; that I have lousy health insurance and don't have t he option of putting the kids on my spouse's plan; that my extended family in the area is only my mom who, as fantastic as she is, is still only one person; that I'm really bad about asking for help; I wouldn't be a very good parent for a special needs child.  That is often -- but not always, I know -- the case with single parents

And if adopting one special needs child would be difficult, how difficult would it be to adopt two at a time?  China used to restrict adoption to one child at a time, except in cases of twins/triplets/etc.  Now, for some hard-to-place special needs kids -- called Special Focus kids -- China allows adoptive parents to adopt a second child at the same time.  That second child can be healthy, special needs or special focus. Here we go again -- in the case of special needs children who potentially need the most support and attention, you're allowed to split your limited resources (EVERYONE has limits on their resources) between two newly-adopted kids, with all that that kind of transition entails. And I've heard prospective adoptive parents talk about this two-fer program as if a healthy child is the "reward" for taking a special needs child, as if the special needs child is the price you have to pay for jumping the line to get a healthy child fast.

Reactions?  What have I gotten wrong?  How to solve these problems?

What will 150 a week get you?

I had to make a quick trip to Wal Mart this afternoon. I have new contacts and needed a new eye drop solution for them... and, of course, 40 dollars worth of other stuff for Camille's party and random crud. Isn't that how places like WM and Target work? You can never walk out with just ONE thing!

When we were in there, I ran into a friend. She is a coupon clipper and was doing her weekly run of four different stores to get items she needed. She proudly (and rightly so) told me that she averages 50 dollars a week on food for a family of four.

I am impressed. It's hard work to clip those coupons, travel to different stores for the deals and pick up only what you need. She offered a few tips and I offered some of mine. She shops at stores and I do alot of on-line shopping. (Amazon is my friend for things like Charlie's Soap.) Then she showed me what she looks for deals on because that's what they eat alot of.: canned soup and canned Pillsbury bread products.

Oh.

Now, don't get me wrong, we ALL buy what we can afford and what we like and what our kids will eat. I used to buy and eat alot of canned soup and I do love me some canned rolls. A few years ago, though, I realized that canned soup is a food unitasker. It can be used for one thing and one thing only- as soup. It was cheaper and healthier to buy soup fixings (like chicken breasts, veggies, broth) and make soup to freeze in protions. Chicken breasts can be used in soup, stir fry, baked as a main dish, in casseroles, etc. In short, soup ingredidents are a multitasker so I would get more bang for my buck out of them.

Plus, all canned food has BPA in it, no matter what is in the can. It is important to lower our exposure to BPA so a high soduim unitasker food with BPA needed to leave our cupboards.

I do try to buy whole foods in their natural form and cook from scratch. I have to shop around and look for deals but I don't typically clip coupons. I've found that most coupons are for things we don't eat, like canned soup. Many times, even with coupons, store brands are cheaper. We have a nice Aldi near us and I swear their cereal is the same as the name brand cereal at the supermarket. When it is under 3 dollars a box and tastes the same, I refuse to pay mega prices for a unitasker food. (Plus, my kids need more than just cereal for breakfast before school, so cereal is normally a weekend breakfast food or a snack.)

So what DO we buy? Every week we buy:
  • fresh fruit and veggies. I buy organic potatoes at Trader Joe's because the conventional ones at other stores seem to go bad really fast. We go through alot of garlic, for some reason, and baby carrots. Other than that, we buy what is in season.
  • Frozen veggies. If we see a good deal, we stock up.
  • milk. We use about three gallons a week.
  • string cheese. This is another Tader Joe's purchase and we buy two packages a week.
  • Butter, yogurt, sour cream and cottage cheese. Sometimes all of these, sometimes none- depends on what the kids are into eating.
  • pasta. We eat whole wheat pasta for quick dinners, or lunch. Whole wheat organic pasta is about 1.39 a bag at Trader Joe's. Whole wheat pasta is also very cheap at Aldi and both places sell white pasta for around 99 cents a package.
  • bread. We buy 3-4 loaves a week and freeze them. We also buy two rolls of bagels and, lately, English muffins.
  • Eggs.
  • Any meat we need for the week. We buy beef in bulk and eat alot of chicken. Depending on when we hit up the deals, we might only have to buy chicken every 2-3 weeks.
  • canned tomato products. If I am shopping, I get them at TJ. If Adam is shopping, he gets them at Aldi.
  • juice. Sometimes and mostly in the winter.
  • dried fruit. Mostly mangoes but sometimes dried bananas.
  • any spices or baking supplies I need, including white and whole wheat flour.
  • any snack foods we might need, like cereal bars.
  • peanut butter
(This list may vary slightly depending on what is in the cupboard, what I have on the menu for the week and if anything we normally use is on sale and I need to stock up.)

Every few weeks we buy:
  • cereal, mostly at Aldi but we love TJ's cheerios!
  • 2 gallons of vinegar. Sam's sells 2 gallons for just over 3 dollars. Plain white distilled vinegar is our cleaning solution (bathrooms, kitchen and floors) and our fabric softener. I like that it is safe, good for the kids and good for the environment.
  •  meat, depending on what is on sale.
  • stock up on carbonated water at TJ's, since I can't drink soda and Adam is trying to drink less
  • an order of Charlie's Soap from Amazon
  • buy overnight diapers and Easy Ups from Amazon.
  • get shredded cheddar cheese and shredded mozzarella cheese from Sam's.
  • baking mixes. Next on my list of things to make at home is pancake and waffle mix.
  • dishwasher soap. I am trying homemade soap and failing!
  • Dr. Bronners. It's five dollars cheaper at TJ's than anywhere else.
  • multi vitamins for myself
  • the odd roll of paper towels for the "OMG, the dog threw up!!!" moment.
  • toothpaste and shampoo for the kids and Adam.
Every few months we buy:
  • olive oil from Sam's.
  • baking soda. With vinegar, I used this as a cleaning scrub in addition to baking.
  • essential oils. To be honest, I can't remember the last time i bought some and I still have plenty of lavender, orange and Tea Tree Oil in the house. They are pricey but a little goes a LONG way!
  • toliet paper
  • baby wipes. I use these for everything!
  • an order of multi and fish vitamins for the kids. I buy 2-3 packs on Amazon, so one order lasts awhile!
  • beef from a local butcher. We buy this about once a year.
  • hair products for me. I use Beauty without Cruelty and order in bulk.
  • personal care products for my husband and myself. Again, we order or buy in bulk, so those last us awhile.
I honestly think our biggest money saver comes from using cloth diapers, cloth kitchen towels, rags and napkins and cooking alot of our products from scratch. While I don't make our own bread, I do make our own rolls. This is something I enjoy, so the time and labor is worth it to me. To another family, it might be worth their time and energy to buy nicer breads or, perhaps, the canned rolls. That's okay; different strokes and all.

When I went down the laundry asile at WM to buy washing machine cleaner, I was struck by the overpowering smells. That's another huge money saver in our house; the lack of commercial cleaning supplies. It's not that I don't clean, it's that I don't clean with oddles of chemicals. I bought a spray bottle at the dollar store (the repurposed bottle I had been using for 3 years finally died) and filled it with vinegar, water and EOs. That is my cleaner for counters, cabniets, the kitchen and bathroom. When I really need to deep clean sinks, I sprinkle baking soda in there, spray some of the cleaner on top of it and after a few moments, rinse and scrub with HOT water. When just a little wipe down is needed, I squirt some dish soap on a rag and wipe down the counters. Wood is cleaned with a teeny amount of olive oil (always spot test first) and a microfiber towel. (I've also been known to use old socks, soft torn up t-shirts and, yes, old underwear!) The only commerial cleaners we buy are window cleaner (haven't found a good homemade one yet), kid and pet stain remover for the "OMG, the dog puked!!!!" moments and toliet bowl wands. (I refuse to have a reusable one around the house. Do you KNOW what my kids would do with one?!) Everything else that they try to convince you that you need, like lysol spray, antibacterial wipes, we don't need. When Georgie was a newborn, yes, we used those. Now, I don't feel like we need the heavy duty cleaners and that we are healthier when we aren't breathing in all those chemicals.

Throw in the odd ingredient, random craving for crackers and speciality item and there you have it. That's all the stuff I include in our 150 a week to keep us fed, happy and healthy.

CHOP reviewing transplant eligibility of Amelia Rivera

The parents of a girl who was allegedly denied a kidney transplant at the Children's Hospital of Philadelphia because of her intellectual disability say they've won a review of her case.

In this article in the Philadelphia Inquirer, the Riveras say they met with hospital staff on Friday "after which they were given instructions on how to proceed with a possible transplant -- including how to have family members tested as potential donors."

Chrissy Rivera said her daughter Amelia's chart initially had the words 'mental retardation' listed as a reason not to do the transplant and that those words have been removed. However, Amelia's case need to be reviewed to see if she is a good medical candidate.

Half of Canadian kids with disabilities lack friends

Update: I just read the report and in fact over half the children had either no friends or only one close relationship with a friend (a little different than how it was reported).

A study that looked at the state of inclusion for kids with disabilities in Canada is disturbing and, I'm afraid, rings true in my experience.

André Picard in the Globe hits the mark in his piece about Anne Snowdon's study today, saying:

"In Canada, we talk a good game about integration, about breaking down barriers to allow the inclusion of people with physical and social disabilities in every aspect of daily life. But reality is more stark and harsh."

Some of the stats: 53 per cent of disabled kids have no friends or one close friend. Only 1 per cent spend an hour a day with friends.

"The problem is most serious for boys – who tend to have far more developmental disabilities and fewer social skills – and it gets worse with age," Picard writes. In childhood, efforts are made, but by the time kids hit age 10 or so, when cliques and social circles form outside of parental control, ostracization and isolation is near complete."

Ethnic Identity Formation in Chinese Adoptees

A Harvard student has started a blog to let us follow along as she researches and writes her senior thesis on ethnic identity formation in Chinese adoptees:
My name is Alexa and I am studying Sociology and Global Health/Health Policy at Harvard. I'm writing my senior honors thesis on ethnic identity formation in children adopted from China. I'll be using this blog to document my progress and share my research leading up to the publishing of my thesis in March, 2012.
Judging from Friday's post about parents' strategies for raising Chinese adoptees, you'll find lots of relevant and interesting information:
Parents’ socialization strategies face two central tensions:
  • The tension between sameness and differentness within the family
  • The tension between Chinese and American identities.
Richard Tessler (1999), a scholar of China to U.S. adoption, outlines four models of socialization. My research will investigate what factors influence parents' choice of socialization strategy. The four models are:
  • Assimilation: focus on American culture (rejection differences)
  • Acculturation: focus on Chinese culture (acknowledgement of differences)
  • Alternation (or bi-cultural socialization): balance American and Chinese culture, with the goal of making children feel comfortable alternating between cultures (acknowledgement of differences)
  • Child choice: parents allow the child to decide which strategy to pursue (My research will not address the child choice model, as I believe that even if the parents want their child to lead the way in identity formation, the parents’ actions and attitudes exert huge influence on the child’s choice.)
If  you're interested in the subject of parenting strategies used by white parents who are parenting Asian children, you might like this post, which explores another research project on the subject.

Will She?

The moment Nichole came out of me, I knew she had Down syndrome. Within seconds, a tide of questions inundated me as I pictured Nichole's future:

-Will she ever get married?
-Will she have a job?
-Will she have friends?
-Will she go to college?
-Will she have hobbies?
-Will she play any sports?
-Will she learn how to play any instruments?

The thing is, those questions and thoughts never really crossed my mind when Ellie was born. At least not the same day she was born! Yet, with Nichole, those were the questions I was dealing with the same day of her birth. The expectations and the normal ways of life all of a sudden did not seem to apply. 

Funny how Nichole can grab a little guitar and show me  that she will do whatever she sets her mind to.

You wonder what my life can look like mom? Here is a little glimpse. Picture me at church leading people in worship, showing them what a pure hearts looks like before the Lord.

Okay, maybe Nichole is not thinking all of that, but she is showing us that we can dream big. This little girl is not going to let us limit her, because she has so much potential, so much to offer, so much to give!

So here she is, my little girl with Down syndrome giving me the best guitar concerts I have seen while she pretends. And who knows! Maybe some day, she will actually be helping her daddy lead worship!






Linked to:

Menu Plan Monday: Week of Jan. 29 and recipe

Sunday: Garlic Parm Chicken. I had this on the menu for the past week but we had so many leftovers, I didn't bother to make it. We had a leftover night instead.

Monday: Chicken Black Bean Casserole with a side of veggies or salad.

Tuesday: Slow cooker potato soup. I plan on halving the recipe.

Wends: Alfredo chicken and veggie pasta. I have cooked chicken in the freezer to use up and I make my own alfredo sauce from Kraft.com.

Thurs: ?????

Friday: Hamburgers and garlicky fries. We made the fries last week and they were really good! They were a bit too peppery for my kids, so I plan on cutting back on the pepper but they ate them!

****
We had a couple food surprises in the past few weeks. I have made it my mission to get quiona into my family. Cole will eat it plain, with veggies and some meat but the other kids say they don't like it. Adam claims to not like the texture. However, I found this recipe for Broccolie Quiona Casserole and they LIKE IT. They EAT it. And we even brought it to a pot luck and it was gone before we made it through the line. I did make some adjustments to it but the basic recipe is the same.


3 tablespoons butter
3 tablespoons flour (white or whole wheat)
1/2 cup milk
1/2 cup chicken broth
4-5 tablespoons cup mayonnaise (low fat works fine as does miracle whip)
1 1/4 cups shredded cheese (cheddar, colby-jack, etc)

1/4 teaspoon black pepper

2 cups cooked broccoli (I used the steam in the bag version, cooked in the microwave)

1 1/2 cups cooked quinoa

Freshly grated Parmesan cheese, or other cheeses

First, cook the quinoa. Rinse 3/4 cup quinoa in a fine sieve until water runs clear. In a small saucepan combine the quinoa,1 1/2 cups water, and 1/2 teaspoon salt. Bring to a boil over high heat. Reduce heat to low and cover. Cook for 18-20 minutes, or until fluffy. (Note: Keep the ratios similar and make a double or triple batch. Quiona keeps well stored in the fridge and is easily mixed with foods like plain veggies and meat for q quick meal. It's a nice, high protien alternative to rice too.)

Meanwhile, melt the butter in a small sauce pan. When metled, whisk in the flour until thick. Add the milk and chicken broth, whisking until combined and thick. Allow to cool. (You can also used canned cream of ___ here. The orginal recipe calls for cream of mushroom or celery. I used the homemade cream of chicken recipe but a plain cream of ____ with one cup of milk instead of the milk and chicken broth would work well.)

Lightly cook the broccoli. I used frozen "cook in the bag" broccoli and steamed it in the microwave. You don't want to cook it well done; if it's still a touch cold, that's okay. It will cook through in the oven. If the bag calls for 4-6 minutes, I cooked it for four.

Preheat oven to 350 degrees and coat a shallow (8×8 in or 5-6 cups) casserole dish with olive oil cooking spray.
In a large bowl combine the cooled soup, mayonnaise, milk, shredded cheese, pepper, until well mixed. Stir in the quinoa and broccoli.

Spoon mixture into prepared dish. Sprinkle on a couple tablespoons of Parmesan (or other cheeses) and bake for 35-40 minutes or until bubbly on the edges. Makes 8 generous 1/2-cup servings.

(End note: I've used miracle whip in a pinch and it turned out fine.)

Asian American Dolls

And I mean real dolls -- not calling Asian American girls and women dolls, which is completely yuck. And now weird guys with an Asian fetish are going to come to my blog.  Sigh.

At the Jade Luck Club blog, the best dolls for Asian American/Pacific Islander girls. The blogger is surprised by all the dolls available, because there weren't many when she was a child:

In browsing all the doll choices at Amazon labeled Asian, I was struck by the multitude of Asian baby dolls. These did not exist when I was little. I wonder if this market niche will continue to grow as the Asian market overseas has more purchasing power. I was also surprised by the specificity of the dolls: Asian baby with Down’s Syndrome (?!) and also Tipi from Laos. Interesting, huh? What do you think of all these choices? And, do your kids have a favorite doll? Please share!


So go add to her list! Our most recent Asian doll purchase was a porcelain doll.  I don't know why, but Zoe has become very interested in porcelain dolls. She's always loved dolls (Maya is more into stuffed animals), and at age 11 still loves to play with her baby dolls.

Once when we were looking at dolls she mused, "I wish there was a porcelain doll with dark hair and a panda!" Ding ding ding!  I knew I'd seen one on some website somewhere.  Didn't track it down again in time for Christmas, but got it for her anyway! Here it is, one of Zoe's new favorites:

Responding to Your Comments # 5

Blog Post: What To Say/Not To Say When your Friend's Baby Has Down Syndrome

Bottom line is that most people mean well even if their responses are somewhat awkward. They'll become more informed over the coming years as they get to know our beautiful children who happen to have a spare chromosome.
You are absolutely right. Most people are trying to show support. This is why we are all learning together.

I'm not sure if you waded through all the comments on Aaron Shust's blog.
Yes I did. Actually, that was the reasons I decided this was a timely post.  Which such a recognized christian figure, and with so many people offering support, it was clear to me who had kids with Down syndrome and who didn't! Again, people are well meaning, but some things are hard to hear.

We were offered an abortion because my numbers were borderline. (20 years ago)I guess it was the law, but I was hurt and insulted!
It is sad that not much has changed. I do wish that there was a better understanding in the medical community about what Down syndrome is like besides the medical issues.

I grew up with a girl with Down Syndrome. We went to (public) school together most of our childhood. I took swimming lessons at her parents' pool and spent a lot of time there. I knew she was different in some ways, but we grew up together and that was a gift. I learned that it was okay - normal - to include her in everyday activities and that she had a lot to contribute.
That is exactly it, they have so much to contribute!

It's always hard to say the right things in awkward situations, but it helps when we can share our experiences with others. I struggled with infertility for almost 9 years and it was hurtful to get comments from friends and even family who meant well, but just didn't know any better.
What a great story to share! Would you consider doing a guest post for "These Broken Vases" about this topic?

I think so often our desire to say something, anything, wins out over just keeping our mouth shut! When my son was diagnosed with autism the comments left me absolutely speechless and heartbroken. I'm sorry; how devastating for you; special needs kids can do so much now, yesterday I saw a child with DS working at Walmart...I would rather hear someone talk about how God made these babies with a PURPOSE!
I love that word...purpose! God does indeed have a purpose for our special children! I am so thankful for how my daughter has changed my life!

Blog Post: These Broken vases: Finding Beauty In Unexpected Places

I just changed over to a new format and got my own domain. I get it!
Tell me more about getting your own domain. How did that go with your old blog posts? With your old links?
What is the best way to respond to comments? I could go on and on with questions! Ha!
I am learning more about blogging. Slowly but surely!

Don't forget, February 1st will be our next Cerebral palsy Connection link-up! So if you blog about Cerebral palsy, don't forget to stop by on Wednesday!

Overheard: Nono

The kids call my dad "Nono." It's a bit of a play off what we call his mother, my Nana, and (I think) a highly Americanized and mid-westernized version of the Italian word for grandpa. Whatever it is, that's what I decided the kids should call him. (Getting my parents to pick grandparent names was a long and slow process. Joseph was about six months old before it happened. I was on the verdge of naming them "Those That Shall Not Be Named" but I doubt Hallmark maks a card that says, "Happy birthday to my Those That Shall Not Be Named!")

Anyway, Nono is a name little ones can say with ease, but, of course, not Georgie. He calls every close male some version of "Dada" but uses a different tone and inflection for them. So while I would type "Dada" when he is referring to both Daddy, Grandpa and Nono, it sounds much different in person.

This morning, Georgie came up to me and said, "Momo?"

"Moo? A cow?"

"Uh-uh. Momo."

"Nono?!"

"Yea. Momo!"

He said "Nono"!

Chinese New Year, Egg Roll Edition

We love the fact that Chinese New Year lasts two weeks -- that gives us the chance for multiple celebrations!  We've had CNY, performance edition; CNY, adoptive families edition, where we went out for Chinese food with a big group; CNY, Chinese School edition, involving learning and singing and fun; CNY, family edition, where just the three of us celebrated; and now CNY, egg roll edition, involving all the essential elements of Chinese New Year -- family, friends & food!

We spent the evening with Chinese friends to celebrate the new year, and for the girls to learn to make egg rolls!  They had a great time -- Zoe & Maya loved playing with our hosts' daughter (with the grapes on a stick!), S. (adopted from China) and her little brother J. They also had fun with arts & crafts, including making Chinese lanterns.  Our host's father is an artist and art professor in China, and this is one of his works -- it's from 1 Corinthians 13, the well-known love verse:

The highlight of the evening was learning to make egg rolls:


Don't you love the inventive use of the chopsticks to scoop the filling onto the egg roll skin?!


(A spoon made it a bit easier!)

Then it was roll. . . .


. . . and roll again.




And then fold in the corners before one more roll . . . .


Then a deep fry, and VOILA!  Egg rolls!


And yes, they tasted as good as they looked -- completely yummy. We are so fortunate to have Chinese friends who can help my girls learn about their heritage, and feed us wonderful food at the same time. What a fun way to ring in the new year (again)!

Birth Father Wins in Utah Supreme Court

Hmm, maybe the tide is turning!  Utah is notoriously unfriendly to birth fathers, but in this case the Utah Supreme Court has reversed a trial court's ruling that the birth father was not entitled to any say in his daughter's adoption, and remanded for a hearing on whether he had fully grasped the opportunity to be a legal parent:
The Utah Supreme Court ruled Friday that a Colorado father was improperly denied a say in his infant daughter’s adoption and sent the case back to a lower court for a rehearing.
In a split decision that establishes a new ground rule for future cases, the justices said Robert Manzanares’ consent to any adoption was necessary. The majority held Manzanares did not know and reasonably could not have known that a birth and adoption would take place in Utah, entitling him by law to more time to intervene in the proceedings.
Although Manzanares stated in a paternity petition filed in a Colorado court months before his daughter’s birth that he feared his girlfriend might flee to Utah, those were "yellow flags" and not the same thing as having knowledge of such a plan, the majority said.
Manzanares reasonably relied on Carie Terry’s denials, stated in Colorado court filings, of any intention to come to Utah to give birth and place their baby for adoption.
* * *
The Utah Supreme Court instructed the district court to hold a hearing to determine whether Manzanares fully complied with Colorado’s requirements for establishing parental rights to his daughter, referred to in court documents as Baby B., and whether he had demonstrated a full commitment to his parental responsibilities.
Manzanares was nearly speechless after learning of the court’s decision.
"It is still an uphill battle but as I’ve said from day one, I won’t stop climbing that mountain until I have [my daughter] in my life," he said. "I’ve missed so much of her life. It is incredible to know that I could be with her soon."

These Broken Vases: Finding Beauty In Unexpected Places


Were you looking for "Stumbo Family Story"? You are in the right place, this is it! There is just a new name and a new look. Let me tell you a little bit about this…

Why the change?

I took a writing class last Fall. A momoir class to be more specific. Wow! What an incredible learning process it was, not only from “learning the craft” but also for gaining perspective. Why do I write? Why do I blog? What is it that compels me to share my story with you? Why would you come here and read what I have to share? 

I do not have it all together. In fact, I have come to look at myself as broken. Not in a, “I am broken, what shall I do!” sort of way. But rather “I am broken, and God is putting me together.” It is the living out of Psalm 139:23-24

“Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.”

As  a pastor’s wife, there was also something very powerful about taking a writing class with a group of women outside of my Christian circle. In this group, I found a level of honesty in the writing and sharing that it challenged me. Really challenged me.  My new friend Sara Lind wrote a post in her blog: Moments of Exhilaration, shortly after the class was over. This is an excerpt of what she said:

The truth is powerful.  And often uncomfortable.  Sometimes too uncomfortable. But you have to face those uncomfortable truths and you have to write them, both for your own sake and because you owe it to your reader.  And you have to tell the whole truth.  Because only half a truth isn’t really the truth at all.

If I tell you that being a mother sometimes makes me angry, but I don’t tell you that once at 3:00 a.m. I slammed the door so hard I broke the door jamb, or that one morning when she wouldn’t go back to sleep after 5:00 a.m. for weeks in a row, I ripped the curtain off the curtain rod, or that sometimes I have to dig my nails into my palm so hard it leaves marks, just to stop myself from doing something worse – if I don’t tell you those things I haven’t told you the truth.  And you might think: “ok, she gets angry, but I’m sure she doesn’t get as angry as I do.  I must be the only mom who ever feels this way.”  And then my attempt to connect with you might just leave you feeling more lonely than ever.

These uncomfortable truths are what draw people in, what make them want to hear more.  It’s what makes us feel like we’re not alone, in parenthood or in life.  As writers we need to tell those truths, more than anything else.  So I will, always, strive to tell the truth here.  It is, after all, why I write.

And this is why I want to write too.  I wrestled with Nichole’s diagnosis, I have struggled to find beauty in adoption, and I find it boring to be a stay-at-home mom many times, I have even shaken my fist at God in defiance, I have felt abandoned by Him. All that comes from places of brokenness. I am a pastor’s wife, but I am also a broken woman, allowing God to put the pieces back together into something beautiful.

If you have been reading this blog for some time now, you know that this is one of my favorite quotes:

"Christ is building his kingdom with the broken things of earth. People desire only the strong, successful, victorious, and unbroken things in life to build their kingdoms, but God is the God of the unsuccessful – the God of those who have failed. Heaven is being filled with earth’s broken lives, and there is no “bruised reed” (Isa. 42:3) that Christ cannot take and restore to a glorious place of blessing and beauty. He can take a life crushed by pain or sorrow and make it a harp whose music will be total praise. He can lift earth’s saddest failure up to heaven’s glory." J.R. Miller
 
What will you find? 


Here is the heart behind the new name:

These Broken Vases: Finding Beauty in Unexpected Places

When my second daughter was born with Down syndrome, she challenged what I viewed as perfect, worthy, important, and valuable in life.  I had received her as a broken baby, only to quickly recognize that I was the broken one. The treasures I have discovered along the way are not found in strength, performance, eloquence, character or confidence. They are found in brokenness, where beauty is found unexpectedly as a result of God’s love and compassion transforming my life. My life is like a broken vase and I offer the pieces to God, trusting that He will take them and use them regardless of my brokenness. 

As I write my story of life, marriage, parenting, special needs, and adoption, I present them to you as they are – broken vases – and share how I find beauty in unexpected places.

Quick Takes Friday: Princess Camille Edition


7 quick takes sm1 Your 7 Quick Takes Toolkit!









1. Six years ago today, we welcomed our first and only daughter, Camille Julia, into the world. Her birth was an hour longer than her brother's, but still fast. She was born four hours after her due date and to this day, still dawdles and makes us juuuust so late! We joke about it but it's totally Camille. And, yes, as annoying as it is, I love her for it and wouldn't change it at all!

2. Camille inhaled mec on the way out and had to spend several hours in the NICU. She was never admitted and her breathing was fine after a few hours. She was only in there as long as she was because she was caught up in the shift change. Still, it was an emotional few hours and I didn't like leaving my baby. I knew one of the NICU nurses from my college days; she was also at Joseph's birth. I asked Adam to request Suzie as her nurse, if at all possible. He did and she was working that shift. My blood pressure had been up but as soon as he came back and told me Suzie was Cami's nurse, my BP went down.

Well, last week we walked over to a local shop that sells local, handmade items. Who was working that shop! Our old nurse! She is now a SAHM who runs an Etsy shop and works part time in that store. My kids have always heard about how one of Mommy's friends gave them their first baths and took care of them in the hospital. I was so thrilled Cami got to meet her in person. The people that took care of my babies when I couldn't hold a special place in my heart and are forever in their birth stories.

3. My only princess and I share some of the same traits. Some of them are less than desirable and I can hear my mother snickering in my head saying, "PAYBACK!" Yes, she is a strong willed little girl who will move mountains. I'm sure this will cause her parents much worry and angst but I also know she will be able to take care of herself in this world.

This past week, though, we discovered Cami and I have something else in common- glasses. My little girl is the first one of my children to need glasses. She's still not sure about the whole deal but we celebrated with ice cream. They should be in soon and I love how she looks in them. So grown up!

4. For her birthday, Camille requested "girl legos." I don't watch the news nor do we get the paper, so I had no ideas these are, apparently, a highly controversial purchase. I guess I am participating in the genderization of toys? Anyway, whatever. They are super cute and I love them! She is a girly-girl and not interested in building a fires truck or star ship. And you know what? That's okay. That's who she is and I refuse to force her to be someone else in the interest of being more "alternative."

Yes, yes she was.
5. My mother is putting together pictures for a family reunion and wants one of everyone at a year old. I think it is a great idea. Cami had her one year photo taken in the same dress I wore at one year. She looks super cute but I have a feeling people are going to say, "Wow, Cami, you were REALLY BALD!"
6. Tomorrow, several of Camille's friends will get together and decorate purses and eat rainbow cake. It's seems like this is her first big girl party and she is so excited. I'm excited for her! She's really blooming into her own person this year.

7. On the NCR, Simcha writes about how we need to remind our children of our love when they are beyond the cute "nibble on the baby cheeks" stage. We need to say, "You are loved, you are special, you are wanted." So to my birthday princess, I say, "You are loved, you are special, you are wanted. You are important, you are a gift, you are just what this family needs. I will always love you and I am so happy God chose us to be your parents."

Happy birthday to my pretty pink princess. May every year be more magical than the last!





Former U.S. Diplomat Testifies in Argentina's "Baby Stealing" Trial

A follow-up by the AP to the story I posted yesterday about information the U.S. holds, through classified documents and past diplomats, about Argentina's military junta stealing children from dissidents and placing them with families loyal to the regime during the "Dirty War" of the '70s & '80s:
A former U.S. diplomat testified Thursday that American officials knew Argentina's military regime was taking babies from dead or jailed dissidents during its "dirty war" against leftists in the 1970s, and it appeared to be a systematic effort at the time.
Elliot Abrams testified by videoconference from Washington in the trial of former dictators Jorge Videla and Reynaldo Bignone and other military and police figures accused of organizing the theft of babies from women who were detained and then executed in the 1976-1983 junta's torture centers.

Abrams said U.S. officials were aware that some children had been taken and then illegally adopted by families loyal to the regime.

"We knew that it wasn't just one or two children," Abrams testified. There must have been some sort of directive from a high level official, he suggested: "a plan, because there were many people who were being murdered or jailed."

"It was a very serious problem because these were children who were alive," Abrams added.

* * *
The junta apparently saw the program as a way to prevent children from growing up "communist," Abrams said. Also, enabling loyal families who couldn't conceive to adopt the babies was seen as a blessing by the regime, he said.

Listen Up, Adoptive Parents!

Margie of Third Mom has something important to tell us:
If you are the parent of an internationally-adopted child, you undoubtedly love that child so much and care for him or her so tenderly that you cannot imagine why someone would want to deny another child the same, especially if you believe that the only alternative is life in an institution. You see how good intercountry adoption can be, and believe it is the very best we can offer to children in need, here and around the world.

But maybe, like my family, you’ve experienced shoddy adoption practices or even adoption corruption first hand, and it makes you so mad you want to spit, even if your child made it through the experience unbroken. If you haven't, you might be sick of adoption for profit, first parent coercion, trafficking, lack of legal protection for intercountry adoptees, adoptive parent entitlement and apathy, or something else.

I live with both of these conflicting thoughts in my head, all the time. Some days I tell myself that the only thing that matters is that a family is found for every child, no matter what it takes. But seldom does that thought linger for long, because I immediately remember that there are reasons those children need families, and that I as an adoptive parent have a responsibility to put those things right.
Here!  Here! Hallelujah, Amen!

Diane Rehm Show: Adoptees Using DNA to Find Family

Today's Diane Rehm Show on NPR was about adoptees using DNA to find family, as discussed in this New York Times piece.  Not surprisingly, the show addressed closed adoption records, too (you can't discuss one without the other, it seems to me).

You can listen to the show here, and/or read the transcript here.

Past Adoptions From Mexico Questioned in Ireland

The Irish Times reports that some are questioning past adoptions from Mexico to Ireland, in light of the latest scandal involving trafficking allegations involving 11 Irish couples who tried to adopt in Mexico:
A claim by the Minister for Children that there is no evidence that previous adoptions in Mexico by Irish couples are unsafe has been challenged in the Dáil.

Frances Fitzgerald referred to the controversy in Mexico where 11 Irish couples had been questioned following the discovery of an international child-smuggling ring, after the arrest of three local women accused of buying children from their mothers.

During a Dáil debate on inter-country adoption, Ms Fitzgerald assured parents who had previously adopted from Mexico that the Adoption Authority of Ireland “has no evidence that previous adoptions are unsafe or are affected by the recent events in Mexico”.

Socialist Party TD Clare Daly questioned the statement and said that of 92 children adopted by Irish couples, 60 were arranged by a lawyer called Lopez, who was being sought by police in Mexico.

“How can the Irish Adoption Board say adoptions from Mexico are safe if the Mexican authorities are seeking an individual who has arranged two-thirds of those adoptions?” the Dublin North TD asked. The lawyer was being sought for “illegal practices in adoption involving 60 children adopted by Irish parents, yet the adoption board is on record as stating that all existing adoptions of Mexican children by Irish couples are safe. Both those scenarios cannot be correct.”
Good question -- how can they say past adoptions from Mexico to Ireland are safe -- proper -- legal --ethical -- when two-thirds of them were handled by the same Mexico lawyer who handled those 11 adoptions that have been branded trafficking?

If you were one of those adoptive parents, who had previously adopted from Mexico through this lawyer, what would you do?

If you were the Irish government, what questions would you be asking?  I'd have a few, including whether those adoptive parents had been screened at all for adoption placement. . . .

News on Amelia Rivera case

The Wolfhirschhorn.org website has posted an update on the Amelia (Mia) Rivera case on its Facebook page. It includes the following. Of course this is one account -- that of Wolfhirschhorn.org representatives and the Riveras. It is good to hear that the family and hospital are actively working together. Louise

Over the weekend, a meeting took place between a number of the key leaders of the Children's Hospital of Philadelphia, the Riveras and wolfhirschhorn.org. The purpose of the meeting was to get an understanding of the chain of events that led to the Brick Walls posting. The meeting lasted a little over 90 minutes and the Riveras had an opportunity to tell their side of the story and the related concerns about Mia's needs and how CHOP handled the situation. CHOP agreed that the system is broken and that they are taking steps to fix the process. In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro-view of awareness around transplant rights for the disabled, and public and medical community education around the "mentally-retarded" phrase. CHOP agreed to follow up and communicate their action items by the end of this week.

Mia and the Riveras are planning a visit to CHOP in the near future to determine CHOP's role in her transplant and her ongoing medical care. Once that meeting takes place, we will issue a statement on the status of Mia, her care, and CHOP's involvement moving forward.