This 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! Continue reading Confessions of a Rockin mom #30: Fears related to Down syndrome & holidays

Because 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. Continue reading Confessions of a Rockin mom #27: Fear of Down syndrome markers

When 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.

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