This week I decided to do an experiment with our Elf on the Shelf. Our son recently turned 10 but surprisingly (and gratefully on my part, I will add!) still believes in the magic of the Elf. I won’t lie and say that the pandemic has been easy for us at home; our son is an only child and is participating in virtual learning, so his interaction with other kids his age is very limited.
Like most families, we have good days and bad days with all of us at home together all day, every day. Because I have such an interest in social emotional learning and adding that to my practice as an OT, I decided to experiment with the Elf as a partner in crime regarding helping my son’s outlook. When he wakes in the morning, he will typically search for the Elf in the house. Along with a surprise location of the Elf, I started leaving positive notes “written” by the Elf. The notes always praise something good that he did the day before. For example, Friday he cleaned his schoolwork area without being asked to, so on Saturday he woke up to a note that read, “You cleaned your school area without being asked! That is being a good helper! Your Elf.” Another note read, “Awesome job reading yesterday!” Now, I know I did not invent this idea of a positive note-leaving Elf; I’m sure many other parents have thought about this as well! Sometimes it is hard for us to think of the good things we are doing, but it certainly feels good when it is pointed out to us.
Activities like this help us to keep focused on the positive things we are doing. And, how nice to start the day with a compliment! So, what is the verdict on the experiment? I can report, although it has only been a week, that my son starts the day with a big smile and has been doing some things around the house without me asking him. I would say, so far, so good!
Easterseals Physical Therapist, Melody Katz has been providing home-based physical therapy to Violet, a baby girl who has Down syndrome. The family is very loving and nurturing and Melody has enjoyed working with Violet. Her father wrote an article about Violet for Down Syndrome Awareness month that was published by the Courier Times and he allowed us to share.
Coming up Violet this October for Down Syndrome Awareness
By John Anastasi
There are 31 days in October. Last year, Down syndrome crossed my mind during none of them. That was me in 2019. Before Violet.
Recognizing October as Down Syndrome Awareness Month may be one of the least significant things my daughter has taught me in the five months since I held her for the first time in the maternity unit of Capital Health Hopewell in Pennington NJ.
We knew before we arrived at the hospital on that Tuesday morning in May that our Violet had trisomy 21, an extra copy of the 21st chromosome. That additional piece of genetic material causes the characteristics associated with Down syndrome.
A prenatal screening had revealed the trisomy 21 way back in November. My wife Emily and I grappled with the news that Violet would likely be the one baby of 700 born in the United States with Down syndrome.
It was hard. As all would-be parents probably do when they learn they’re expecting, Emily and I dreamed about what kind of life our child would have. We did the same thing before her older brother Luke was born in 2017. Receiving the diagnosis prompted a painful course correction.
The day we found out, we left work early. We did research, we prayed, we struggled. We built the ultimate “fake-it-until-you-make-it” narrative we’d employ when we told our families and friends the news: Don’t say you’re sorry. Don’t feel bad for us. We’re excited. Our baby is perfect. She is exactly what God intended and we’re going to work hard to be parents who are worthy of her. Yes, she may have related health problems and cognitive delays but her possibilities are still limitless.
Some days we meant what we said 100%. Other days, we faked it.
Emily threw herself into the research. She found specialists, joined Facebook groups for support, bought books, watched videos, tracked down people she knew with children that have Down syndrome and set up Zoom calls with them. Emily also ran point on Violet’s early intervention efforts.
No stone would be left unturned if there was a chance that beneath that stone was something that’d give our baby a better shot or help Emily be the mom her daughter needed.
We met our sweet Violet and fell head over heels for her. She was healthy. She also cleared a number of hurdles that’d worried us from the beginning. She has an atrial septal defect (a hole in the wall separating the two upper chambers of the heart) but it’s small and the specialists say it needs only to be monitored at bi-annual checks. If it does get larger, Violet’s a good candidate for a less-invasive surgery that can be done in a catheterization laboratory.
A friend told me “anytime the doctor sees it and says ‘come back in six months’ that’s a win.” I’m going with that.
As befitting her extra chromosome, Violet is extra everything — affectionate, happy and curious with a smile that can light up the darkest corners of our minds and hearts. She also exhibits a scrappy, stubborn side that comes out during her physical therapy sessions. But it’s her sweetness we keep coming back to. It’s as immeasurable as it is unconditional.
Violet is challenging us every day to follow her example by living joyfully, loving completely and trusting absolutely.
Even in our first five months as the parents of a child with special needs, we’ve been touched by so many people, many of them here in Bucks County, who’ve welcomed us into this community.
Specifically, we’ll mention the fine work of everyone at Bucks County Early Intervention, Jack’s Basket, a nonprofit that provides congratulatory gifts, support and resources to the families of children with Down syndrome, and Nothing Down, which works with the medical community to promote compassionate notification of Down syndrome diagnoses, plus up-to-date education and resources. And we highly recommend the Bucks County Down Syndrome Interest Group and the Down Syndrome Diagnosis Network for parents looking to get connected.
We’d also like to thank those in the Commonwealth for speaking out in support of Pennsylvanians with Down syndrome earlier this month.
They include Pennsylvania First Lady Frances Wolf, who spoke of the need to “honor the contributions of individuals living the Down syndrome to our communities…” and human services Secretary Teresa Miller, who encouraged Pennsylvanians to play an active role in celebrating and uplifting the stories and experiences of our family, friends and neighbors with Down Syndrome so they can live an everyday life with inclusion and opportunities that they are entitled to and deserve.”
Today, we celebrate Violet’s story in the hopes that, by telling it, we can do something small to help secure an inclusive future world for Violet and all of her brothers and sisters with Down syndrome.
We can’t wait to see what Violet does next, what she’ll be like when she’s older, how she’ll stare down prejudices and push back on those who try to tell her what she can’t do. It’s going to be amazing.
It is officially holiday season, which although for many is a joyous time, it can also be a time of sadness and increased stress for others. This year brings more of a challenge to celebrating the holidays while living with the COVID-19 pandemic. Even though we have been living with the pandemic since March, and the related closures and recommendations for social distancing, it can be upsetting and unsettling to not be able to celebrate holidays the way we normally would. And this can be harder to understand for our children. Spending time with our immediate families on some mindfulness activities can help alleviate the stress we are feeling. Doing a stroll around the internet, I found a variety of activities and resources that may satisfy this need to take some breathes, acknowledge how we all are feeling, and find the gratitude in what we do have in this time of pandemic. One of my favorite mindfulness activities this time of year is taking an after-dark walk in the neighborhood to enjoy the lights and decorations that people have put up. Bundle up, make some hot cocoa and grab flashlights for this activity with your family. Wishing all a safe, healthy and peaceful holiday season!