Haters Gonna Hate

Way back in November 2015, I was featured on an anti-adoption blog. I fixed some formatting and spelling but the rest is intact.

Another Special Angel from Armenia is being RESCUED by yet another self indignant, self righteous nut this one is from Michigan. Save the praises for her - and adoration, she is purchasing this child and it's not cheap. 

[Picture of Zola.]
This poor little "Homie with an extra Chromie" could have stayed with her family had Robin spent $200,000 to improve the conditions in Armenia for special needs children.

Here is Ms. Obenauf's tasteless self adoration (hold the applause for this child savior-wait till she is home and reality of raising a special needs down syndrome child set in)  Obenauf is even selling T Shirts to raise money for the adoption.  Does Obenauf know that the USA's foster care system is full of down syndrome babies looking for a home.   Robin probably doesn't share that part with these do-gooders.

A few things worth noting:

1) Children who are adopted are not purchased. Every attempt was made to make sure her parents willingly gave her up for adoption and I know that in our case, this is 100% accurate.

2) Blogger lady used a picture of Zola even though this was posted in November 2015, the same month I had court for Octavia/Peaches and nearly 4 months after I went on my registration trip. 

3) I don't know if she uses improper language out of spite or out of ignorance but please remember that people first language is important. "Child with Down syndrome" or "child with special needs", not special needs child or Down syndrome child.

4) Yes, adoption is expensive. It is absolutely okay to fund raise and ask for help. Fundraising is not the same as asking for a handout.

5) Yes, there are children with special needs in the US foster care system. No, it isn't an either/or, one size fits all answer. It's okay to adopt children from the US foster care system and it's okay to adopt children with special needs from orphanages internationally. Just because you do one, it does not mean you cannot do the other, too. 

6) Octavia has been home for 2 years now and the reality of raising a child with Down syndrome set in long ago. Yet, she's still mine. I still adore her. She adores me. We were meant to be together. Raising a child with Down syndrome has not been hard for me. Yes, parenting Octavia comes with challenges but she's a strong willed child who loves to get her way. Parenting any child comes with challenges and I will not be deterred just because she happens to have Down syndrome.

The point of me calling this poster out is this: Anyone can trash an adoptive parent for any reason. Don't listen to the naysayers. They're vindictive, jealous people who are unhappy with their own lives and would rather see children grow up in orphanages and then be shipped off to adult mental institutions as long as they kept their "culture".

I'm reminded of a Taylor Swift song, "Shake It Off", when people attempt to slander my name:

And the haters gonna hate, hate, hate, hate, hate
Baby, I'm just gonna shake, shake, shake, shake, shake
I shake it off, I shake it off

School, Surgery, and More, Oh My!

Good evening!Apparently, I am bad at posting blogs I start to write. I started this post at the end of September and here we are at the end of November, the post still not published. 

Octavia is just finishing her 3rd month of preschool (and her new daycare!) She adjusted well to her new schedule and seems to enjoy going. It's amazing how much change I have seen from her in such a short amount of time. She just acts like a big kid now, she's definitely not my baby anymore!

She wouldn't sit still!

She's such a big kid now!

In mid-September, Octavia went to the ENT because of reoccurring strep throat and enlarged tonsils. She ended up getting her tonsils and adenoids removed and tubes put in her ears two weeks ago. Since she has an atrial-septal heart defect, her ENT wanted her to spend the night in the hospital for monitoring. Everything was fine so we went home the following morning!

Getting ready for surgery!

 Recovery wasn't terrible. She was abnormally cranky in the mornings and had a rough time sleeping but other than that, she was her usual fun, happy self. She was 100% back to normal the following Friday (the day after Thanksgiving). Since having tubes put in, I have already noticed a difference in her language. Her babbles have turned into real words and she is doing a better job of listening. She doesn't always do what you ask her to but what else can you expect from a newly 3-year-old? 😉  
 

A few days after surgery.

Speaking of being newly 3, Octavia celebrated her 3rd birthday just a few days before her surgery! We didn't do anything super special, just stayed in, ate pizza, opened presents, and had cake and ice cream.

In September, my mom went on her first trip to visit "Lana". Things went well, you can read more here. I am currently hosting an online auction to help raise funds. There are a lot of awesome items up for bid, here's the link to the auction: https://www.facebook.com/binauction/?ref=bookmarks

A few pictures of items that would make perfect Christmas presents. Top row: Crocheted blanket, LulaRoe Christmas Leggings. Bottom row: Jiayou card game (pictures made by orphans), handmade crocheted ladybug coin purse.

 

I also designed some shirts on Bonfire. All shirts are 3/4 length baseball tees. "Merry Christmas" is available with green or red sleeves, "Let It Snow" is available in blue sleeves, and the "Peace on Earth" shirts have navy sleeves. These shirts are available for 5 more days and need 5 more shirts of each style to print!

Long Overdue Update

Life has been flying by but I'm loving every minute of it. I will update on Octavia but first, I want to share some exciting news! I'm happy to say that because of me, my mom, and my advocacy, my mom is in the process of adopting a 15-year-old girl with Down syndrome! She has submitted her dossier and is anxiously awaiting travel dates for her first trip. You can follow her journey at http://lifealteringeffects.blogspot.com/. 

June marked 18 months since Octavia came home! It meant our fourth post placement was due, here some highlights I mentioned on our post adoption report:

Since last July, Octavia has participated in weekly early intervention through Early On services offered by our local school district. Since she is now 2 1/2, she is able to enroll in the school district's special education preschool program and her first day is next week! Octavia is incredibly social and I am hoping that she loves school as much as I did when I was a child.

A picture of us from the local Down syndrome association's 3/21 party.

Since Octavia's tear duct surgery in October, the issue got worse in her left eye and she had surgery to correct the issue again in May. During this surgery, they placed a stent into the tear duct to help it drain properly. The stent has since been removed and the surgery seems to have been successful. We will follow up with her ophthalmologist in January to check in and make sure everything still looks good.

After her stent was put in. No more tears!

In February, we took a trip to the cardiologist and he said that everything looks good. He did not perform an EKG but will perform one at her next appointment. In 2 years! She does not have to go back for TWO years! So exciting!

When it comes to speech, she's continually learning more words and sounds. She has 40+ words in her vocabulary but is selective as to when she wants to use some. A few words that she uses on a regular basis include hug, bye, hi, more, and done. She also knows the signs for "more" and "done" and will use them appropriately. Even though most of her words are one syllable, she does say "Where is it?", "Who is it?" and "What is it?" on a regular basis.

She loves to read.

We are currently working on potty training (slowly but surely), fine motor skills, language development, and self care.

Easter!

Octavia eats well. Her favorite foods are chicken, pasta/potatoes, and cheese. She also likes ice cream! She does well with trying new foods and isn't a very picky eater.

Her first ice cream cone!

Then I Met You

Before I committed to adopting a child, the words “Down syndrome” were scary. I had no idea what the diagnosis would entail other than what I’d seen and read online. I didn’t know exactly what the community support system would be like. I didn’t understand what all of the (potential) therapies meant.

Before I committed to adopting you, the words “Atrial Septal Defect” were scary. I didn’t think I wanted to adopt a child who had a heart defect and might need surgery. The words heart defect sounded incredibly intimidating. I didn’t know what doctor’s appointments would be like. I didn’t know whether or not you would need surgery. Then, I met you.

I couldn’t stop thinking about your face. How incredibly sad you looked in your referral picture. Even though the diagnoses of Down syndrome and Atrial Septal Defect were scary, I didn't let that stop me from loving you. You are so much more than a medical diagnosis. You are my intelligent, charismatic, determined and imaginative girl who's brightened my world. I am incredibly blessed to call you my daughter.

You have been my daughter for one whole year (plus a few days) and I am thankful for every single one of those days.

It can be incredibly scary to think about caring for a child who has "special needs" but if you give it a chance, it will be okay. Octavia isn't any different than any other 2-year-old. Yes, it may take her longer to learn some things, but she is still a capable and strong little girl. Our children are so much more than a medical diagnosis. If you're expecting a child with Down syndrome or considering adopting, please know that it will be okay.

Just before Gotcha Day!

Recent!

Happy Birthday! + Updates

This determined, delightful, and spirited little girl turned two on Thursday! She's turning into such a confident and sensitive girl, she amazes me every day. She's walking, talking more and more, and enjoys being read to.

We invited a few family members over yesterday for a small birthday party.

At the beginning of October, Octavia had a probe of her tear ducts and was supposed to have tubes put in but her tear ducts were too small for the tubes. The probe itself is supposed to be 75% effective, compared to the probe and tubes was supposed to be 85% effective. She still has some tearing but the doctor said that it's likely how she will be since her tear ducts are small. If it gets worse, we're supposed to go back to the ophthalmologist. In the picture below, you can see a little bit of tearing in her right eye.

The weather ended up being nice for the Step Up for Down Syndrome walk that we participated in last month. Here are two pictures that were taken by the local Down syndrome association.

Octavia loves to play in the leaves outside! 

For Halloween, Octavia dressed as a bumblebee. She was the cutest bumblebee you will ever see! We went trick-or-treating and she LOVED walking around the neighborhood and knocking on people's doors. She loves to knock on doors and windows, even if we're at home!

Since the weather has been usually nice this fall, we went to the zoo last weekend. The animals that were still out were loving the cooler weather and we got some good views of the bear and tigers. Octavia seemed to enjoy the zoo quite a bit!

I think that's all of the Octavia spam for today! She's growing and thriving! 

I was going through my emails on Friday and realized that 11/11 was the one year anniversary of when the agency wanted me to give them my preferred travel dates and her new name. It's crazy to think that one year ago, she wasn't yet my legal daughter. It feels like she's spent her entire life in my care.

Day 23: Special Pediatrician?

Down Syndrome Awareness Month: Day 23

Does my child with Down syndrome need a special pediatrician?

For routine care, a child with Down syndrome does not need to be seen by any sort of specialist, a regular doctor is just fine! The most important thing is to fine a doctor you are comfortable with and who is willing to learn with you.

Day 22: Always Happy?

Down Syndrome Awareness Month - Day 22

Aren't people with Down syndrome always happy?

This is a common myth about Down syndrome. People with Down syndrome experience a full range of emotions just like anyone else. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Octavia can be happy, sad, grumpy, upset, angry, and anything in between. She is just like any typically developing child in that she has a range of emotions and different things can upset her. When she's not feeling well, she can let you know.

Playing in the leaves makes her happy!

Day 21: Book Recommendations

Down Syndrome Awareness Month - Day 21

What are some good books to read about raising a child with Down syndrome?

Here are a few recommended books on Down syndrome for parents:

• Babies with Down Syndrome: A New Parents' Guide by Susan J. Skallerup
• The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood by Jennifer Jacob
• Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome by Jennifer Graf Groneberg
• Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier by Natalie Hale

Recommended books for children:

• What's Inside You Is Inside Me, Too: My Chromosomes Make Me Unique by Deslie Webb Quinby
• We'll Paint the Octopus Red by Stephanie Stuve-Bodeen
• 47 Strings. Tessa's Special Code by Becky Carey and Bonnie Leick
• My Friend Isabelle by Eliza Woloson

Day 20: Number of Orphans with Down Syndrome Internationally

Down Syndrome Awareness Month - Day 20

Internationally, how many children with Down syndrome are in orphanages?

In Central and Eastern European countries (excluding Russia), there are more than 1.5 MILLION children who have been placed in "public care". Since we know that statistically, Down syndrome occurs in roughly 1 in every 700 pregnancies, it is estimated that over 2,100 of these children have Down syndrome. Yes, some families try to keep their child born with Down syndrome but that is the rare exception, rather than the rule. Some of these 2,100 children do not survive because of serious medical complications, some because of a lack of medical attention, lack of food, or a lack of love.

In Russia, there are over 700,000 children waiting for families, meaning there are at least 1,000 children with Down syndrome waiting for families.

In Asia (China, Hong Kong, Korea, and India), there are at least 3.5 million orphans, which equates to about 5,000 children with Down syndrome living in orphanages.

In total, that's an estimated 8,100 children with Down syndrome who live in orphanages!

Day 19: Down Syndrome and Adoption

Down Syndrome Awareness Month - Day 19

Why are there so many children with Down syndrome waiting to be adopted outside the United States?

The simple answer is that there are so many children waiting because these countries don't do prenatal screening so the parents do not know ahead of time that their child will be born with Down syndrome. Since they don't know about it ahead of time, they cannot abort their child.

The more in depth answer is that in many of these countries, children with special needs are seen as a stain on the family line and if they're not given up for adoption, it can be virtually impossible for the other children in the family to get married and have families of their own.

In addition to this, there is also the fact that many of these countries don't have the medical technology that we have readily available and even if they wanted to keep their child, they'd have a hard time finding and affording medical care or occupational therapy.

No matter how much parents might want to keep their child, they sometimes do so for the simple fact that the child will have a better chance to live if they're adopted internationally.

Outside St. Hripsime Church

Day 19: RODS

Down Syndrome Awareness Month - Day 19

RODS - Racing for Orphans with Down Syndrome

Did you know that there is an organization with the mission of nurturing a positive image of Down syndrome and to promote for the adoption of orphans with Down syndrome? They do this by raising adoption grant funds (one child at a time) and participating in organized, athletic races, and awareness events. This organization is called RODS, Racing for Orphans with Down Syndrome. Their goal is to raise $15,000 for each child they fund raise for.

To date, they've raised funds for: 15 children who are now home, 5 children who are in the process of being adopted, and 2 children who are still waiting for their forever families. This means their current child is #23!

One of the families in the process of adopting a girl from Octavia's country found their daughter while she was a RODS child! Sponsor Hadley has more of their story!

The current RODS orphan is Asher and he sure is a sweetie! Here's Asher's Reece's Rainbow page.

Day 18: What's My Favorite Thing?

Down Syndrome Awareness Month - Day 18

What's my favorite thing about Octavia?

My favorite thing about Octavia is her personality. She always finds a way to be funny and light up my day. A few pictures that show off her personality:

When did books become a food group?!

Yes, that's my child! ;)

Sitting in a bin of clothes because why not?!

She's cool!

Octavia is not defined by Down syndrome. She is so much more. If you're expecting a child with Down syndrome, please know that your child's value is so much more than you could possibly imagine!

Day 17: Self Advocacy

Down Syndrome Awareness Month - Day 17

Self Advocacy

Many people with Down syndrome can advocate for themselves. Sofia is one of those people. She was adopted from Ukraine as an infant, is a model/spokesperson with the Changing the Face of Beauty campaign, and modeled for Target! You can read more about Sofia here.

Day 16: Is Down syndrome hereditary?

Down Syndrome Awareness Month - Day 16

Is Down syndrome hereditary?

The only type of Down syndrome that's hereditary (passed through genes from parent to child) is translocation Down syndrome. Of all cases of Translocation Down syndrome, approximately one third (equal to 1% of all cases of Down syndrome) are hereditary.

Unrelated picture but I'm really missing Armenia right now so I'm throwing a picture of Etchmiadzin Cathedral.

Day 15: Abortions Due to Down Syndrome

Down Syndrome Awareness Month - Day 15

How many babies with Down syndrome are aborted before they're born?

For years, we have heard that an estimated 90-95% of babies diagnosed with Down syndrome in-utero are aborted. Those numbers surfaced in 1999 in Europe, where countries track prenatal diagnoses of birth defects and subsequent abortion. The US doesn't collect that information, and estimates here have been all over the map.

The Jerome Lejeune Foundation released a new study that gives us more solid data. Researchers used  information and data from a dozen states that do track live births of babies with Down syndrome to devise a new estimate of how many babies with Down syndrome were likely aborted. Their model showed that such abortions have reduced the US population of people with Down syndrome by about 30 percent.

That doesn't mean 30 percent of babies with positive tests for Down syndrome were aborted. The number reflects a reduction in the population we'd expect to be living with Down syndrome, regardless of when it was diagnosed. The key is a related study in 2012, which used a mathematical model to estimate that 67% of babies diagnosed with Down syndrome in the US are aborted.

While 67% is certainly better than the 90-95% we're seeing in Europe, it's still too many.

More information can be found in the Jerome Lejeune Foundation's Summer 2015 Newsletter.

Day 14: What should medical professionals say?

Down Syndrome Awareness Month - Day 14

What advice should I give as a medical professional?

Parents who receive the news that their baby has Down syndrome often remember all of the details surrounding it, where they were, what time of day it was, etc.

Conversations should start with positive words, avoiding language that conveys pity or sorrow, and not involve unsolicited personal opinions. Accurate, up-to-date information should be communicated, and information offered for local support groups and community resources.

While you may be required to tell a parent all of their options, please do not continuously repeat that the mother has the option of aborting her baby.... presenting her with her options is one thing, talking about it more than that is borderline harassment. Don't tell them that their child will "suffer" from a "low quality of life".

Use facts and logic when you talk to them. Mention what I've said the previous 13 days. Yes, there are health complications commonly associated with Down syndrome. However, that certainly isn't the only thing about Down syndrome. Mention that with medical technology available today, the life expectancy for children with Down syndrome has increased from 10 years to 60 years. Children with Down syndrome are graduating high school, holding jobs, and can even live on their own. It's not all roses but it isn't professional to only point out the negatives associated with the diagnosis.

Again, I point out that a link to local support groups can be found in the day 8 post.

Octavia says that we're more alike than different!

Day 13: What do I say?

Down Syndrome Awareness Month - Day 13

What do I say to someone who will be giving birth to a baby with Down syndrome?

What would you say to a mother who is pregnant? You'd say, "Congratulations!" Right? This is the same thing you say to someone who is expecting a baby with Down syndrome.

If you want to go into further detail, tell them how Down syndrome is not a death sentence and their child will teach them the true meaning of life, love, and happiness. That child will bring them immense joy.

Tell them to not be afraid. While it can be scary to receive a diagnosis that makes your child "different", it'll all be okay and there are support networks for families raising children with Down syndrome (more on support networks can be found in the day 8 post).

What do I say to someone whose baby was diagnosed with Down syndrome?

Again, you congratulate them.

You can ask:
- How's the baby's health? Down syndrome does come with health issues but Down syndrome itself is not a health issue.
- How are you? Not everyone wants to talk about their feelings but putting the question out there is appreciated (especially if it's sincere).
- The baby has your [insert feature here]. People with Down syndrome look more like their family than they do each other.
- Can I hold him? Pay attention to him, hold him, love on him. Treat him like you would any other baby.

What should I never, ever say?

Statements that convey or infer pity:
"I'm sorry."
"What a shame."
"How sad."
"Poor thing."
"It could be worse."

Questions such as:
"How severely is he affected?"
"Didn't you have the tests?"

Statements that imply that people with disabilities are a huge burden:
"I couldn't do it."
"I couldn't handle it."
"You're such a saint."

Stereotypical statements that are not helpful and untrue:
"They're such happy and loving children."

Day 12: Older Parents and Other Factors

Down Syndrome Awareness Month - Day 12

Aren't most children born with Down syndrome born to older parents?

This is false. Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the chances of having a child with Down syndrome increases with the age of the mother, especially after age 35.

A woman's chances of giving birth to a child with Down syndrome increase with age because older eggs have a greater risk of improper chromosome division.

The chances of conceiving a child with Down syndrome:

• Under age 25 - 1 in 1,400
• By age 35 - 1 in 350
• By age 40 - 1 in 100
• By age 45 - 1 in 30

As the average age of women becoming pregnant increases, Down syndrome is being diagnosed more frequently.

What are other factors?

- A woman who has one child with Down syndrome has about a 1 in 100 chance of having another child with Down syndrome.

- Both men and women can pass the genetic translocation for Down syndrome on to their children.

Day 11: Who Discovered Down Syndrome?

Down Syndrome Awareness Month - Day 11

Who discovered Down syndrome?

In 1866, British physician John Langdon Down first described Down syndrome as "Mongolism". Down published an essay in which he described a set of children with common features who were distinct from other children with mental disabilities. At the time, he was superintendent of an asylum for children with mental disabilities in Surrey, England. Down based his term, Mongolism, on the notion that these children looked like people from Mongolia, who were thought then to have an arrested development.

In the 1960's, this ethnic insult came under fire by Asian genetic researched and the term was dropped from scientific use. In the early 1970's that the term Down syndrome became accepted.

Petrus Johannes Waardenburg, a Dutch ophthalmologist and geneticist, and Dr. Adrien Bleyer were the first people known to have speculated that Down syndrome might be due to chromosomal abnormalities.

In 1959, Jerome Lejeune, a French pediatrician and geneticist, and Patricia Jacobs, a British geneticist, independently determined the cause of Down syndrome to be trisomy of the 21st chromosome. Cases of Down syndrome due to translocation and mosaicism were described over the next three years.

Day 10: Health Issues Associated with Down Syndrome

Down Syndrome Awareness Month - Day 10

What health issues are commonly associated with Down syndrome?

Here are ten health issues associated with Down syndrome:

• Heart defects - As mentioned in a previous post, about half of the children with Down syndrome are born with some type of heart defect. 
• Leukemia - Children with Down syndrome are many times more likely to develop either acute lymphocytic leukemia (ALL) or acute myeloid leukemia (AML) than other children are, with an overall risk of about 2-3%.
• Infectious diseases - Since there are abnormalities in the immune systems of people with Down syndrome, they're more at risk of infectious diseases, such as pneumonia.
• Dementia - People with Down syndrome have an increased risk of dementia - signs and symptoms may begin around age 50. Those who have dementia also have a higher rate of seizures. A person with Down syndrome also has an increased risk of developing Alzheimer's disease.
• Sleep apnea - Because of soft tissue and skeletal changes that lead to the obstruction of their airways, children and adults with Down syndrome are at a greater risk of obstructive sleep apnea.
• Obesity - Research suggests that both the thyroid and a lower metabolic rate contribute to people with Down syndrome being overweight. This means that they burn fewer calories overall and need to exercise more to burn off the same number of calories.
• Vision problem - More than 60% of children with Down syndrome have vision problems, including cataracts. The risk of cataract increases with age. Other eye problems include nearnearsightedness, "crossed" eyes (strabismus), and rapid, involuntary eye movements. 
• Hearing loss - About 70-75% of children with Down syndrome have some hearing loss.
• Hypothyroidism - The thyroid is a gland that makes hormones the body uses to regulate things such as temperature and energy. Hypothyroidism is when the thyroid produces little to no thyroid hormone.
• Hypotonia - Poor muscle tone and low strength contribute to the delays our children have in rolling over, sitting up, crawling, and walking. Despite these delays, children with Down syndrome can learn to participate in physical activities like other children.

Octavia and our dog, Zenobia