Day 8: Support Networks

Day 8 - Support Networks

MYTH: Parents will not find community support in bringing up their child with Down syndrome.

TRUTH: Almost every community in the United States has parents support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. These organizations provide programs such as: new parent support and education, family meetings, sibling and grandparent support, recreational activities, lending libraries, helplines, regional conferences, partnerships with Down syndrome clinics, training for medical professionals and educators, advocacy, and buddy walks. To find a support group in your area, visit this ndss.org page.

Today was our local organization's Step Up for Down Syndrome walk. All together, over $130,000 was raised! In addition for raising funds for our location organization, which does so much for the families with children with Down syndrome, this event is a great way to network with other families who are raising a child with Down syndrome.

I got to meet another family who adopted from Armenia! Their son came home a few months after Octavia came home and was in the same orphanage (small world). It's so wonderful to meet other families who are raising a loved one with Down syndrome, especially ones who have been adopted. Adopted children come with their own special needs in addition to their medical diagnoses. Raising a child with Down syndrome is different for all families but for many who have adopted a child with Down syndrome out of choice, the path tends to feel different from the path of those families whose biological child has Down syndrome.

Octavia and Sam meet.

Hugs!

Day 7: People First Language

Day 7 - People First Language

"That Down syndrome boy."
"That girl has Down syndrome."

Which one is correct? The second one, "That girl has Down syndrome." Always put the person before the syndrome. People "have" Down syndrome, they do not "suffer from" it. Those with disabilities are not defined by their disabilities, which is why their disability should not come first.

This is Octavia. Octavia is smart, funny, loving, sweet, and kind. Octavia has Down syndrome. Octavia is not Down syndrome.

Also, the term "intellectual disability" has replaced "mental retardation" as the appropriate term. Many advocates for those with special needs condemn the use of the word "retard" or "retarded" in any derogatory context. Using either of this words, in any context, is hurtful and suggests that people with disabilities are not competent.

Day 6: Down Syndrome and Families

Day 6 - How will having a child with Down syndrome affect my family?

According to a study published by Dr. Brian Skotko in 2011 (found here):

• 99% of parents/guardians said they loved their child with Down syndrome
• 79% felt their outlook on life was more positive because of their child
• 5% felt embarrassed by their child
• 4% regretted having their child

Of siblings age 12 and older:

• 94% expressed feelings of pride about their sibling
• 7% felt embarrassed by their sibling
• 4% would "trade their sibling in" for another
• 88% said they felt they were better people because of their sibling with Down syndrome

Of siblings age 9-11:

• 97% said they loved their sibling
• 90% felt their friends are comfortable around their sibling

People with Down syndrome:

• 99% said they were happy with their lives
• 97% liked who they are
• 96% liked how they look
• 86% indicated they could make friends easily
• 4% expressed sadness about their life

The parents surveyed reported learning a variety of life lessons, the top five being personal self-growth, patience, acceptance/respect, love, joy.

What, exactly, does this show? It shows that raising a person with Down syndrome is a largely positive experience and people with Down syndrome are happy with their lives. Love them, value them. Your life will change immensely (for the better) because of your child.

Days 3, 4, 5: Why Do I Advocate, Down Syndrome Occurrence, and Life Expectancy

Day 3 - Why am I an advocate for those with Down syndrome?

On Monday, I didn't have a chance to write a post on my blog but I did write a Facebook post related to this video from BBC Two. I was going to wait to answer the harder questions but the video came across my Facebook page and I felt compelled to write about it.

This video is why I advocate for individuals with Down syndrome. Places like Iceland already have a 100% termination rate for individuals with Down syndrome. Other countries in Europe are on track for the same.

For what? Why? What is really so bad about Down syndrome? Sure, getting a prenatal diagnosis about how your child will be "different" (aren't we all?) might be scary but these are people! They may not grow up to be a doctor or a lawyer but EVERYONE has a role to fill in society. I'm never going to be a doctor or lawyer, should my life be terminated? Where do we draw the line? How do we determine whose life has value?

Before you decide to terminate your child's life because he or she MAY have Down syndrome, I challenge you to meet someone with the disorder and learn what their life is really like. I promise, it really isn't as scary as some medical professionals make it out to be.

There are special challenges in raising a child with Down syndrome, I will not deny that, but there are always going to be challenges in life, regardless of what you do. Along with the challenges, Octavia brings me immense joy every.single.day. She always knows how to make me smile.


Day 4 - How frequently does Down syndrome occur?

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the US is born with Down syndrome, which equates to about 6,000 births per year. There are currently about 400,000 people with Down syndrome living in the United States.


Day 5 - What is the life expectancy for a person with Down syndrome?

In 1960, the life expectancy for a person with Down syndrome was 10 years. In 1983, it was 25 years. Today, it's 60 years. 60 years. It's amazing what modern technology has done not only for people with Down syndrome but people as a whole!

Day 2: Common Traits of Down Syndrome

Day 2 - What are the common traits of Down syndrome?

Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all. Typical characteristics include:

• A flattened face, especially the bridge of the nose
• Almond-shaped eyes that slant up
• Small stature, ears, hands, and feet
• A single line across the palm of the hand (Simian crease/Palmar Crease)
• Low muscle tone (hypotonia)
• Cognitive delays, usually mild to moderate

Children with Down syndrome are at a higher risk for congenital heart disease. The incidence of CHD in the general population is .8 percent but in children with Down syndrome, it's 40-60 percent.

Some heart defects can be left alone with careful monitoring while other require surgery to correct the problem. The most common defects in children with Down syndrome are Atrioventricular Septal Defects (AVSD) -- most common, Ventricular Septal Defects (VSD), Atrial Septal Defects, Patent Ductus Arteriosus, and Tetralogy of Fallot. Octavia was diagnosed with an Atrial Septal Defect (ASD) that is being monitored by her cardiologist.

Hypotonia causes most children with Down syndrome to take longer to learn to walk, talk, and eat the same foods other children their age eat.

Down Syndrome Awareness Month

October is Down syndrome acceptance/awareness month. In honor of this month, I am going to try and do daily posts with facts, myths dispelled, and stories featuring people with Down syndrome.

Day 1 - What is Down syndrome?

Normally, a person has 46 chromosomes. In a person with Down syndrome, they have 47 chromosomes, the extra chromosome comes from a third copy of the 21st chromosome, thus the name trisomy 21 (aka Down syndrome).

There are three types of Down syndrome: trisomy 21 (nondisjunction), mosaicism, and translocation.

Trisomy 21 is the most common type of DS. Prior to or at conception, a pair of 21st chromosomes in either the sperm of the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. 

Translocation is the second most common type of DS, occurring in about 4% of people with DS. With translocation, the number of chromosomes in the cells remains 46, but an additional full or partial copy of chromosome 21 attaches to another chromosome, usually chromosome 14. The presence of the extra full or partial chromosome 21 causes the characteristics of Down syndrome.

Mosaic Down syndrome is the most rare, occurring in only about 1% of people with DS. Mosaicism is diagnosed when there is a mixture of two types of cells, some containing the usual 46 chromosomes and some containing 47. Those cells with 47 chromosomes contain an extra chromosome 21.

Here's my little cutie with t21 chilling on a firetruck!

Nine.

I promise, I really don't intend to go so long between updates! I do have a few things to share:

1) On October 8th, we will have a team walking in the local Step Up for Down Syndrome walk to raise money for the local Down syndrome association. Our goal is to raise $1,000, please consider donating to "Octavia's Arsenal" to sponsor us! The link can be found here.

2) A few months ago, I became a rep for The Gourmet Cupboard. The reason I joined TGC (aside from the fact that I love their products!) is to help families in the process of adopting. TGC has a fundraising opportunity and I would like to extend this opportunity to as many families in the process of adopting as possible! I am also willing to do fundraisers for school clubs, churches, or anyone else in need of a fundraiser. For fundraisers, you earn $1.50 for each individual mix sold and 50% on fundraising packages. There is potential to earn a LOT of money from these fundraisers!

A little bit about TGC: The Gourmet Cupboard makes cooking simple. Their gourmet mixes are handmade using only the finest gourmet ingredients at just the right proportions. Each mix includes all the dry ingredients, all you need are the sour cream, water, cream cheese, meat, etc. All products are individually made at the time of your order and most contain no MSG or preservatives.

The product line includes soups, meals, side dishes, sweet and savory dips, teas, coffees, muffins & breads, desserts, diabetic friendly & sugar free, cookies, seasonings, salads & dressings, and SO much more!

Besides making cooking easier on you, TGC mixes make great gifts!

The fundraiser I have going on right now is for a family in the process of adopting "Laura", a little girl I had the pleasure of meeting while I was adopting Octavia. The link for their fundraiser can be found here.

3) You probably want to know how the little one is doing, right? I saved the best for last! Octavia is thriving and learning new things every day! She started Early On in July and has had a handful of visits with her therapist. She will be working with her therapist once a week now that school is in session. What is Early On? Early On serves infants and toddlers from birth to 36 months with developmental delay or conditions that could lead to such delay. It has been well established that early intervention is an effective way to prevent or reduce problems for children at a later age.

Octavia's accomplishments:
- Walking, she's walking approximately 50% of the time
- Self feeding, she can feed herself with a spoon
- First haircut
- Stacks blocks, the blocks she has are similar to these Squeeze Blocks
- Drink out of a straw, Munchkin 7oz Weighted Straw Sippy Cup is the first straw sippy she's been able to use.
- First camping trip
- Words, Octavia says at least 10 words, including bye, hi, dog, bubbles, thank you, sit, out, ball, mom, oh, and uh oh
- Gestures, she can wave, give kisses, clap, and raise her arms when you say "so big!"

Last week, Octavia had an appointment with an eye doctor, who referred us to a specialist. The first ophthalmologist she saw suspects that Octavia has blocked tear ducts and the specialist we see on next week should give us more definitive answers. I initially scheduled the eye appointment because I was concerned she was getting strabismus in one eye. However, that is not the case. Children with DS sometimes have small folds of skin at the inner corners of their eyes, called Epicanthal folds.

And now... OCTAVIA SPAM!!!!! I adore this girl so much! She brightens my day, every day and can always make me laugh!

Tay and the baby in the mirror.

Dressed up as a bag of popcorn for Trick-or-Treating at the campground. The hat lasted .001 seconds.

Nighttime at the campground.

At the Children's Museum, Octavia had a lot of fun!

Goofy girl!

Hanging out at the Shipshewana Flea Market.

Octavia and her best friend, our pup Zenobia.

Playing at Early On.

BUBBLES!

Five Months Home

I never intend on going a month (or more!) between blog posts but life has been passing by crazy fast. Octavia is 18 months old and has been home for almost 6 months! Now that the weather is warm, we have been spending more time outside. We like going to the park to play. The first few times Octavia was put in the infant swing, she didn’t last more than a minute but after going a few times with daycare and seeing another child her age love the swing, she began to like it. Now, she loves it and will throw a fit if I take her out of the swing! I recently bought a Lillebaby carrier to use when we go on walks and stuff. She loves to be in it and it’s so comfy for me! I only wish I had it when I was on my pickup trip, we might have gone on more walks since it’s so much cozier than the one I had with me then.

Octavia is as sweet as a honey bee, she loves to give me hugs and snuggle, and she thinks it’s the funniest thing ever when she can get me to laugh. She enjoys dancing to music and banging her blocks together. Oh, and she loves water! She gets so excited when I run bath water for her. She pulls herself up, walks along the couch and walks while pushing objects across the floor. Last week, Octavia had a follow-up appointment at the neurologist. Her blood work wasn’t back yet but he did check on her development. She is now 21.1 lbs. and 28.5”. In her first appointment home (on 12/22), she was 16.3 lbs. and 27.5”. Using the new Down syndrome growth charts, this puts her at the 50th percentile for weight and 18th percentile for length. At 13 months, she was in the 18th percentile for weight and the 38th percentile for length.

Standing!

She’s also cut three new teeth in the last week alone. All three of her new teeth are in the front and on top. She has eleven teeth now and she loves to use them (to eat). She doesn’t like it when I feed her anymore, she’d much rather take the food and feed herself. When she first came home, she was using bottles, even after she transitioned to solid food. She soon transitioned to the transitional sippy cups and now uses regular sippy cups full time.

Eating one of her favorite foods -- graham crackers!

Favorites
Meals: chicken and potatoes or pasta, spaghetti
Vegetables: peas
Fruit: bananas, applesauce
Snacks: Yogurt, graham crackers
Toy: VTech Connect And Sing Animal Train
Book: "Mr. Brown Can Moo, Can You" by Dr. Seuss

She loves to read!

For Mother’s Day, I got a pretty plant delivered to my work. For my first Mother’s Day, Octavia and I spent the day with my mom.

Mother's Day 2016: Not the best picture but she's a wiggle worm!

The whole adoption thing still seems so surreal. I feel as though Octavia has always been mine, always been a part of me, and to think she hasn’t even been legally mine for 6 months is crazy. In my heart, she’s been mine since before she was born. It was heartbreaking to receive the news about Zola last March but in all honesty, it couldn’t have worked out better. Zola has been home with her family for 8 months, is loved, and is thriving.

Three Months Home!

Time passes by so quickly. We have been home for three months now and Octavia has been adjusting well. She's 16 months now and really starting to "talk". Even though her "words" are not clearly understood, she definitely gets her point across!

In January, we saw the pediatric orthopedist about possible hip dysplasia. I'm happy to report that she doesn't have it. We'll be going back in two years for a check up.

We had her cardio appointment in early February and the cardiologist believes that her heart defect is small to moderate but since she hasn't had any issues, I just have to keep an eye on things and we'll be going back in another year.

Earlier this month, we saw the neurologist and he ordered a diagnostic test for Down syndrome. Both the doctor and I thought it would be beneficial in the future to have an official diagnosis. We'll be stopping in to the lab this week to get the test done. Her follow up isn't until April or May so we will have the official results then.

There is a family adopting from the same orphanage Octavia was in. They're a few months away from their pick up trip but are currently working on raising funds for 120 pairs of brand new shoes so the children there can each have their very own shoes. For a $20 donation, you're not only helping to provide an orphan with brand new shoes, you'll have a chance to win a brand new I-Pad Mini. You can read more at Marcy's Blog.

Today

Happy baby!

Two months!

Octavia has been out of the orphanage for almost 10 weeks now and we've been home for 7 weeks (we got home 12/18).

Our trip home was uneventful. We flew from Octavia's country to Vienna, from Vienna to Newark, NJ, and then Newark home. The entire trip took just under 23 hours and Octavia did extremely well throughout the entire thing. For the long trip from Vienna to Newark, we had the entire middle section of seats to our self, which was nice because Octavia was a lap baby and we got to spread out a little more than we would have otherwise.

The first leg of our trip home!

Part of the welcome home crew! Octavia and I were really tired by this point! Recognize the sweatshirt & t-shirt in the front row and the pink shirt on the right? I sold those!

Since we got home, Octavia got to celebrate her first real Christmas.

Christmas Day

She is pulling herself up on people and furniture and loves to stand when I'm holding her hands. Being held and holding my hands to stand up are two of her favorite activities. Until we got home, she was only drinking formula and eating baby cereal. She's now eating solids and loves it, she especially likes to self feed. Three of her favorite foods are bananas, peas, and yogurt. She also loves to drink apple juice.

Left: The first picture I ever saw, she was 4 months old.
Right: A few days ago, at 14 months.

I've been back to work for three weeks now and Octavia loves her daycare. She gets to play with other children her age and the daycare woman's two girls (5 & 3) love to dote on Octavia. We're still working on getting our morning routine down but we're almost there!