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MAMABILITY

A blog about LIFE with Down syndrome!

Down Syndrome

Confessions of a Rockin mom #30: Fears related to Down syndrome & holidays

October 31, 2016

Everett's halloween costumesThis is my final confession of the series (and Down syndrome Awareness Month -2016) and for obvious reasons, it will address Halloween! For Everett’s very first Halloween we dressed him up as a baby skeleton and I bought Vic & I matching skeleton tees (the tees have become a Halloween tradition for us!). We took Everett to a trick or treat event that year and I wore him in a Baby Bjorn while we watched all the bigger kids knocking on doors, saying “trick or treat,” and filling their bags with candy. I remember wondering — Will Everett ever be able to participate in Halloween events like these typically developing kids? I guess I was afraid he wouldn’t experience holidays like everyone else, simply because he has Down syndrome. Boy did I have a lot to learn during those early days.

Fast-forward to Halloween 2016, and Everett is trick-or-treating like a boss. Following the crowd, holding his own bag (most of the time ?), and loading it with goodies! This pic collage is one of our family & Everett celebrating Halloween over the years. To me, this picture looks just like any other family growing and celebrating from year to year. Yes, Everett has DS and sometimes that’s the focus of our day as it comes with ups & downs (pun intended this time!). But 99.9% of the time, he’s just a kid to me and we’re just a “normal” family trying to survive the early years of raising two young boys. Hopefully my confessions throughout this month have taught you the same — our families are way more alike than different. There are some concerning things about DS, but for the most part, there isn’t much to be afraid of. Parenting in general, however, can be very scary at times. With or without an extra chromosome. Happy Halloween everyone…and Happy Down syndrome Awareness Month! [Read more…] about Confessions of a Rockin mom #30: Fears related to Down syndrome & holidays

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Confessions of a Rockin mom #29: Fears related to preterm labor & Down syndrome

October 30, 2016

Everett and Liam birth photosEverett was born nearly five weeks early. Vic & I were both convinced it was false labor and we were shocked when the doctor on duty told us we were having a baby the night of May 26th, 2013. Everett was born that morning of the 27th, and shortly thereafter diagnosed with Down syndrome. It was Memorial Day. My regular OB was off for the holiday, but called in to the hospital that morning to check on me. She told me if I could hang on a little longer, she’d drive up to the hospital and deliver my baby on her day off. I did, and she did. This meant so much to me. She confided later that she suspected there might be some sort of issue because I was in early labor, and wanted to be there for me. In her experience (mostly anecdotal evidence), a lot of babies with genetic conditions are born early.

This information intrigued me, so I dug up a lot of research on premature labor and Down syndrome later on. And I’ll have to confess…from what I’ve read and gathered, the jury is still out on this one. A lot of babies with DS are born early. But a lot go full term too. Regardless, I was very fearful I might go into early labor with Liam (as was my OB), so I had to take progesterone shots for 20 weeks to stave off labor with him. And it worked. I went full term with Liam and had to get induced. I was certain this time around we’d leave the hospital without a diagnosis, but I was wrong. Turns out, when you go full term and have a big baby (8 lbs 14 oz), your baby gets labeled LGA. Large for gestational age ?.  Vic weighed nearly 10 lbs when he was born.  I blame him for this. [Read more…] about Confessions of a Rockin mom #29: Fears related to preterm labor & Down syndrome

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Confessions of a Rockin mom #28: Fears related to having more children

October 29, 2016

Everett and LiamWe were overjoyed when we found out that I was expecting a sibling for Everett. And when we learned Liam was a little boy, we couldn’t believe how blessed we were. Two little boys…brothers! For 9 months we waited patiently and happily for little Liam’s arrival. But I’ll have to confess…the night before I was induced with Liam, I broke down a little bit.

After 9 months, it dawned on me that it wouldn’t be just the three of us anymore. How would I manage a newborn and all of Everett’s therapies and school activities? How was I going to balance work and family with two little ones with different developmental needs? Would a new baby take away from Everett’s quality of life? Will I love this baby as much as Everett? What had we done?!?! This fear makes me lol now, and was totally unwarranted (and probably hormonal). Even though these sweet brothers have their ups and downs (no pun intended!), they complete each other and our sweet little family. This photo is one that marks the beginning of a beautiful friendship. Here’s to brothers :).   [Read more…] about Confessions of a Rockin mom #28: Fears related to having more children

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Confessions of a Rockin mom #27: Fear of Down syndrome markers

October 28, 2016

Everett as a babyBecause Everett was diagnosed with Down syndrome right after he was born, we had to order a karyotype blood test to confirm his diagnosis. In the meantime, all we had to go on in gauging whether he had DS or not, were some physical characteristics. I remember a lot of people (especially healthcare providers) constantly scrutinizing his palms, feet, eyes, ears and overall stature. And I’ll have to confess….this worried me a great deal. I feared early on that the rest of the world would scrutinize the traits he has that are a part of DS. Would they only see his upturned eyes? The gap between his big toe and his first toe? The fact that he’s a little on the short side? Will people notice how cute he is, or just these physical markers?

Here are my thoughts on this fear now — Maybe people only see these markers, but who cares. I genuinely think it’s these traits (his beautiful almond-shaped eyes, chubby feet, and husky little body) that make him precious. Down syndrome or not, in my humble motherly opinion…I think he’s downright perfect. [Read more…] about Confessions of a Rockin mom #27: Fear of Down syndrome markers

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Confessions of a Rockin mom #26: Fear of “slower” milestones

October 27, 2016

Fact — “Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.” (NDSS.org). Let’s focus on the second part of this statement for a second, specifically the term “development.” Hopefully by now I’ve demonstrated to many of you that people with Down syndrome can do anything they put their minds to, just like people who don’t have Down syndrome.

But sometimes it takes our kiddos a little longer to achieve certain developmental milestones that many of us take for granted. For example, I took my first steps when I was around 10 months old. Everett took his first steps when he was closer to 20 months old. A lot of his “delayed” milestones are due to hypotonia which is a characteristic of DS where kiddos have floppier muscles. It affects everything from walking to swallowing and eventually forming words and speaking. I remember in the early days a lot of people would ask me things like “Is he walking yet?” or “Is he eating finger foods yet?” While I think these questions are just part of the deal when you become a parent, it was always a reminder to me that my kid was probably behind the others. I feared and loathed these questions.

Thus, I’m addressing a warranted fear with this post. But here is the good news if you’re a new parent of a child with DS and you’re reading this entry: 1) After about a year, people stop asking these questions. I found this to be the case with both of my kids. It’s very liberating. 2) Your child will eventually do whatever the next milestone is that everyone is asking about, and then you will wish your child would SLOW down! I couldn’t wait for Everett to walk. And now he runs away from me . Here is a cute video of him at his second birthday party…still a little rusty on the walking!

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Confessions of a Rockin mom #25: Fears related to growing up

October 26, 2016

austinWhen I was about 7 1/2 months pregnant with Everett, Vic & I went out to dinner one night at one of our favorite local restaurants, an Italian joint. I distinctly remember that night. I remember what I wore, I remember what I ordered, and I remember where I sat. I remember these (what would seem like mundane) events, because that evening a young man with Down syndrome chose our table for us, seated us, handed us our menus, and began telling us what his favorite menu items were (including HIS banana pudding recipe in the dessert section). This young man was very professional, well-spoken, and it was obvious he was the most popular guy at the restaurant. Everyone, literally everyone, knew his name. Vic & I talked on the way home about what a neat experience it was, seeing this young man in action. Days later, Everett was born and diagnosed. A lot of people began telling me everything Everett wouldn’t be able to do. He’ll never go to college they said, work, or learn how to snow ski, etc. And every time someone would say things like this, I would think to myself, “but what about that guy at the Italian restaurant?” It’s so funny to me now that I used to think of Austin Underwood as “that guy at the Italian restaurant.” He is a good family friend of ours now, as well as his amazing mom Jan. If you’ve never met Austin (which would surprise me, pretty sure everyone in our area knows him), then you should. He’ll tell you all about his new business venture, his old college days, and how he loves to go snow skiing every year ?.

On a side note, if you’d like to learn more about Austin’s business venture (Austin’s Underdawgs) and donate to the cause, here is the link! It’s a great way to support a business that is giving back to the differently-abled community!!! https://www.pieshell.com/projects/austins-underdawgs [Read more…] about Confessions of a Rockin mom #25: Fears related to growing up

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Confessions of a Rockin mom #24: Fears related to inclusion (or lack thereof)

October 25, 2016

everettpuzzleWhen I was a kid in elementary school, all of my differently-abled peers attended a separate class that was titled “self-contained.” Since I attended the general education classes, I never interacted with any of these children. These interactions (or lack thereof) were the first memories of differently-abled persons that I drew on when making sense of Everett’s diagnosis. And I’ll have to confess…this scared the ever living crap out of me. The thought of my child being swept away from his typical peers and isolated from his school community was heart-wrenching. Absolutely heart-wrenching. I learned quickly thereafter that the days of “self-contained” classrooms are a thing of the past and that “inclusion” is now a feature at many schools. Inclusion occurs when kiddos with different abilities learn alongside their typical peers in a general education classroom. There is “full inclusion” and there are variations of inclusion where differently-abled children are pulled out of a gen ed classroom for speech therapy (just one example). I have no idea what kind of inclusion we will want for Everett, but for now, I know we will push for what we think he needs. I’m definitely still a student in this area and parents of older children are serving as my teachers. Meanwhile, the good people at Kinderfrogs are preparing Everett for the next step…mainstream kindergarten at a public school. I am so grateful for our friends at Kinderfrogs. Everett is getting geared up for the “real world” while enrolled there. And so am I. This photo is one of Everett working hard in the pre-K class.

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Confessions of a Rockin mom #23: Fears about where my child will live someday

October 24, 2016

Everett runningWe live in a modest home. Between Vic, me, the boys and our two large dogs, space is tight in our 2 bed/1.5 bath 1925 bungalow. But we love our home. Our boys are growing, however, and we know there will come a point when we have to spread our wings and fly. Vic & I both dread this day. And I’ll have to confess…we’ll probably never sell this house even when we outgrow it. An early fear for a lot of parents of kiddos with DS revolves around the big question of — Where will my child live as an adult? While I think this question could apply to any person, questions about how our children will thrive as adults surface early for parents in the DS community. And most of us don’t have answers to those questions yet, just like many of you who have typically developing youngsters don’t have answers to those questions yet (Do you know where your kiddos will live 20 years from now?). I think this is a warranted fear for any parent, but I guess there are more question marks for our kids. For the time being, I can assure you that Everett will be welcomed in this home for as long as it remains in our names. It’s small, easy to keep up, close to a grocery store, and very close to public transportation. And I’ll have to confess something else…it’s got a great backyard. Perfect for adding a guest house/garage, for say, a certain retired and overprotective mama ?. [Read more…] about Confessions of a Rockin mom #23: Fears about where my child will live someday

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Confessions of a Rockin mom #22: Fear of behavior issues

October 23, 2016

leashed_kidsWhen Everett was about 6 months old we took him to have his picture made with Santa at a local mall. When we got settled into the long line of families waiting for their obligatory Santa photos, we realized the parents in front of us had a daughter with Down syndrome. Her name was Meagan and she was about 5-years-old. Meagan was an adorable little girl but I noticed her mom was having a hard time wrangling her because Meagan liked to run away. She darted all over that mall with her mother trailing her from store to store. And I’ll have to confess…this concerned me. While I was glad to see that Meagan was so physically active, I envisioned a future for myself that would involve me wrangling Everett. A lot. This fear was definitely warranted. Like Meagan, Everett has a mind of his own. And when he gets it in his mind to go somewhere…he runs for it. I chase him down and practically hogtie him every morning when it’s time to get dressed. And you should see the scene he makes when it’s time to leave a playground. This trend becomes really concerning when parking lots are involved, so I came up with a temporary solution. As you can see in this photo, however, the “runaway” fear isn’t necessarily Down syndrome specific ?. 

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Confessions of a Rockin Mom #21: Fear of early genetic testing

October 22, 2016

In this confession I’m going to address prenatal testing with one caveat — this post is NOT, I repeat NOT, meant to stir up personal and political opinions related to pro-life/pro-choice issues. If anyone comments as such, your remarks will be deleted. Here goes.

Everett's Ultrasound PictureWhen I was around 20 weeks pregnant with Everett we received this ultrasound photo and we were told we’d be having a baby boy. Around this time, we also received the news that the prenatal testing we had opted to do, came back “negative” for Trisomy 21. We decided to do this early testing because we wanted to be prepared should our child have a genetic anomaly. We were never given this opportunity, which to this day, I have mixed feelings about. And I’ll have to confess…after Everett was born and diagnosed, I was very, very angry about the inaccurate results we received. So I began doing research on these tests. Lots and lots of research. And here is what I found: 1). 70 – 90% of expecting parents choose to terminate their pregnancies when receiving a diagnosis of Down syndrome for their unborn child. 2). Although these prenatal tests are marketed for their precision, they are actually not that great at accurately detecting genetic anomalies. [Read more…] about Confessions of a Rockin Mom #21: Fear of early genetic testing

Filed Under: Confessions of a Rockin Mom, Down Syndrome, Down Syndrome Awareness Month, Faith Forward

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Cara and her boys Liam and Everett

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