To kick off the Easterseals’ virtual, free Quarterly Town Hall Series on Thursday, January 28, 2021 on Zoom, our special guest speaker Jennifer Lynn Robinson, Esq., CEO of Purposeful Networking, will help us explore how the small practice of gratitude can have big impact on your life and well-being. This engaging conversation with Ms. Robinson will provide action-items and takeaways that you can use in your daily life.
We spoke briefly with Jennifer about gratitude.
Easterseals: So, why do you think gratitude is important?
Jennifer: “Gratitude leads to greater happiness. It also helps with health benefits, building stronger relationships and dealing with adversity.”
Easterseals: Given the events of the last year, why is gratitude even more important right now?
Jennifer: “We are almost a year into this. Obviously we are dealing with large issues such as COVID and a racial reckoning in our country. But there are also the smaller but no less important things. We are mourning seeing friends & family, missing reunions, weddings, vacations–and even just the everyday normalcy of making small talk and seeing the people we interact with smile instead of behind a mask. Gratitude is even more important right now to combat those dips in our emotional and mental well-being. Additionally, by focusing on the positive we tend not to spiral and reach high anxiety levels about those things we cannot control.”
Easterseals: What is something small we can do right now to bring more gratitude into our day?
Jennifer: “Start a gratitude jar for the rest of 2021. Each day write down something you are grateful for or a highlight of your day. On New Year’s Eve read all of them! Some days it may be hard to find a silver lining but find something small. I remember one year at Thanksgiving we were going around the table asking everyone what they were thankful for and my youngest nephew said he was thankful for the color yellow. I still remember it years later.”
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!
This week I am attending a virtual conference from my makeshift (and yet somehow more and more permanent) office in my dining room.
It is an annual conference for fundraising professionals hosted by Blackbaud, the platform Easterseals uses to manage donor data.
Initially, I wasn’t super excited to be glued to my computer for Zoom Keynotes and Zoom breakout sessions and Zoom networking (what even is that?). That PLUS my regular Zoom meetings seemed like maybe too much zooming.
Then, the people at Blackbaud scored Amy Poehler as a keynote speaker.
(If you don’t know Amy Poehler’s alter-ego Leslie Knope from the long-running TV show Parks & Rec, you *must* go right now and binge-watch it on Netflix. It is a definite pandemic pick-me-up.)
#BBCON, you had me at Amy Poehler.
Leslie Knope is known for her commemorative scrapbooks and detailed event binders, her dedication to her job, and her enthusiastic encouragement of absolutely everyone to be their very best. She is the ultimate development professional: nothing gets her down, she can always find a way to work around a “no,” and she has never-ending energy.
(I kind of love Leslie Knope.)
But it was the actress, not the character giving the keynote, so I wasn’t sure what to expect.
Turns out, Amy Poehler is her own brand of Leslie Knope, having recently started “Amy’s Smart Girls,” a nonprofit “dedicated to helping young people cultivate their authentic selves.”
She was amazing.
She talked about the physicality of doing her voice work as the character “Joy” in Disney Pixar’s Inside Out. She talked about the world right now, about finding happiness in uncertainty, and about philanthropy.
Two things she said stuck out to me.
First, she said “Do work you are proud of with your talented friends.”
CHECK. I am proud of the work we do at Easterseals. It’s SO hard right now because of COVID pivots and uncertainty, but I know that what we are doing makes a difference in the lives of the kids and families we serve. And boy do we have some amazing talent. From our teachers and assistants to our PT/OT/Speech and Music therapists to our Assistive Tech Department and even accounting, we have staff that work here because they love it, and it shows.
Then, when talking about philanthropic giving, she said “Giving is self-care.”
It feels good to do good.
Leslie Knope couldn’t have said it better herself.
As we approach the season of giving, I don’t want our donors to “give till it hurts.”
I want to help our donors learn more about what we do, about how we serve people with disabilities, and how we continue to serve families through COVID. I want donors to get Leslie Knope-level excited about our mission. I want them to understand why their gifts are so critical (especially now), and to see the absolute joy on a child’s face when they achieve a goal… a goal made real in part because of our donors’ gifts.
I want our donors to give until it feels good.
I’d even be willing to make a scrapbook to commemorate the occasion.
This summer marked my 5th year as an ESY (Extended School Year) teacher for Lower Merion School District through Easterseals of Southeastern PA. I have worked with students in the program from grades K to 12, and while I mostly work with students in their own homes, in past years I have meet with kids at local camps, equestrian farms, libraries, churches, and even cafes. All work is provided by the child’s special education teacher and I track data for each goal highlighted in the child’s IEP. I LOVE this program and the all of the students I have worked with throughout the years. I normally have a new group of kids each summer, but I have met with some students multiple years in a row. Every family I have met has been warm, inviting, and grateful for my summer help.
Because of the COVID-19 pandemic, this summer was the first time I completed my tutoring sessions online. At first I worried that I would have trouble connecting with each student in a virtual format, but each child’s personality was still able to shine through. I had one student who bonded with me over our shared love of guinea pigs. At the final session, she showed me her pigs, and I held up all three of mine. I had another student who was very into technology. Each session he had a different virtual background waiting for me to see. I learned a lot of new Zoom features by working with this child!
I struggled to figure out how to teach over Zoom, using the scanned paper and pencil tasks that had been left by the students’ teachers. I ended up using the “Snipping Tool” to “cut” the daily tasks we would be completing together. I then pasted each activity into a Google Slides presentation. I made a new set of Google Slides for each session, and started each presentation with the objectives for the day. I locked each task so that it could not be moved, and then added text boxes on top of the task so that the student could type the answer. We also used the line feature for matching activities and the scribble tool for multiple choice questions. Students were able to work in Google Slides with me during the session, which made our time much more fun and interactive. When it was time to send materials back to the teachers in August, I was able to include a document of Slide links, instead of scanned pictures or individual materials. What I thought was going to be a more difficult summer of adjusting to teaching online, actually ended up being much calmer and organized than I could have planned. I am excited to return to my regular position of teaching second grade, where my district will be fully virtual until at least October 2.
This was my first summer taking part in the Easterseals program for ESY, working with high school students in writing. After several years as a professional writing tutor for a couple of universities in the area, I took the chance to broaden my experience by working with students at a different grade level. Online tutoring, as a result of the pandemic, is a mixed bag: on the one hand, I’ve done totally virtual tutoring in the past, so the transition was smooth for me. I point that out because, conversely, students were still adjusting to the shift from in person learning to using computers from home, logging on to school and tutoring. The readiness of distractions, coupled with the separation from a dedicated learning space, made for difficulty early on. As the first couple of weeks went by, students started to adjust to this new situation. We established routines and had clearly defined expectations for each session we met for.
This year, everyone needed to adjust to these new circumstances: teachers, parents, and students. ESY was no exception, as families were forced to cancel vacations, children had to stay inside away from friends, and both present and future were uncertain (and remain so). While ESY may not have been most students’ first choice on how to spend this new summer vacation, I believe it did help to bring some sense of normalcy to their lives. No matter what else may have been going on, there was at least the knowledge that “I’m going to be doing writing work later this week.” While keeping skills sharp during summer break, ESY gave the chance for routine, which is important for anyone during times like these. I feel great knowing that working with Easterseals helped provide not only learning, but structure for these students.
Our Takeaways to Remember for Online Learning:
1) Keep an open mind: While virtual teaching is different from the in-person learning we are used to, it has many positives. Students can interact with coursework in new ways and show off their computer skills. There is still time to bond with each student, so look for their interests and help foster connections with those.
2) Keep to a routine: Students thrive from routine and structure. If possible, use the same link for each session and meet at the same time each day. Structure your activities in the same format such as: warm-up, mini lesson, practice, fun review game. Students will know what to expect and will feel more confident participating.
3) Be organized: In an online format activities and lessons need to be easily accessible and ready to go to maximize time-on-task with students. Consider placing your lesson into a format like Google Slides or Google Docs that students can complete with you. If students are not completing tasks on the screen, these formats can still be used for organization when you share your screen. Use easy to use fonts and do not overload each slide with excessive pictures or colors. Keep student interest by alternating text with videos, games, and other activities.
4) Set expectations: Telling the students the objectives of the lesson upfront will help them stay on task as the lesson moves forward. When working with students with IEPs, tell them which goal you are working towards and why. Students are often much more motivated to complete tasks if they know what they are working towards. Some students are also competitive and want to beat their own scores when they notice a pattern in assessments and have a set goal. Celebrate their victories when they move closer to their goals or surpass them. Consider graphing their progress each week to add an extra element (and some math!) to the process.
5) Be flexible: Everyone is adjusting to new territory this year and many students are going through more than we know. Try to be patient and encouraging with students by allowing them to keep their videos turned off, allowing time for snacks, and factoring in some movement breaks. Sometimes allowing for something this simple can keep the student working hard throughout the session.
Matt Parsons is a professional writing tutor and adjunct professor at two local universities. Melanie Solano works as a second grade teacher and the LMS Curriculum Coordinator for Springfield School District in Delaware County. They both love teaching and helping students meet their goals.
I don’t think anyone would disagree that the past five months have been a whirlwind. Our lives were turned upside down and sideways. Was I anticipating that the Covid pandemic was going to last this long? No I wasn’t. As the days went by I found myself drifting away from family and friends. Regular interaction with co-workers was mostly halted due to the appropriate decisions to have the staff work from home. Those of you who know me, know that I am a pretty upbeat and positive soul. I felt like I was starting to lose some of my shine. Not having any of the normalcy I was used to, that I’ve taken for granted, was starting to wear on me. Can’t do something as simple as have breakfast at the Diner before I go food shopping. Oh, and let’s not talk about the whole process of food shopping. I miss the kids. I so miss the kids. They are the best part of my work day.
I realized I needed to connect. I needed to bring some of the sunshine and joy back into my life. I needed some Mung therapy. Just in case you have never read any of my blogs, Mung is a student that graduated from Easterseals a couple of years ago. I bonded with him and his family while he was a student here and we have kept in touch. Usually meeting up a couple times a year for an outing. So grateful to his family for sharing him with me. For his summer break I had planned to meet up with him, take the ferry from Penn’s Landing, go to the Camden Aquarium and feed him to the sharks. Ok, I wasn’t going to feed him to the sharks. Unfortunately, circumstances squashed my plans. I thought about it. If I’m feeling disconnected, how must it feel for the kids. It was time for me to get selfish. Time to bring a little unexpected sunshine into his life. Selfish because this would probably bring me more joy than he would get out of it. I have a little inexpensive pick-me-up I use on occasion. It is a Cookie Card. Its $6.00, shipping included. You get to send one cookie in a decorated box with your message on the label. I got so excited at the prospect of bringing joy that it helped bring that spark back. I couldn’t wait for it to be delivered.
I didn’t have to wait long before I got a text with a picture and two videos of him thanking me aka “Wonder Woman” and Autumn (my daughter) aka “Bat Man”. He said that he loves and misses us. It was so nice to hear. I realize that you can start to lose yourself if you become too disconnected from the world and each other. We have to get used to a “new normal” and have to rebalance how that makes us feel, find the positives and take joy in the little things. It’s been real trying, but we’ll be stronger because of it.
In this series, Suzanne Gladstone, MS OTR/L, provides a more helpful ways to get out of your chair! In the first video she explains how to make a homemade card using simple abstract art with markers, crayons and paper.
The second video goes over how skills presented in the previous series will be incorporated into this fun art activity.
In this video series, Suzanne Gladstone, MS/OTRL shares some fun ways to get kids out of their chairs. This series shares the benefits of different play positions. These sessions address structured drawing, bilateral coordination and finger isolation.
Booker T. Washington, American author, orator, educator, and advisor to many presidents once said, “You measure the size of the accomplishment by the obstacles you have to overcome to reach your goals.”
So, that being said…let me tell you about a little boy I know named Miles. He is a 6 year old that is currently a student of mine at Easterseals of Southeastern PA, Bucks County Division. I have had the pleasure of watching him fight to overcome obstacles for the past 9 months, but he has been fighting an uphill battle for all 72 months of his young life.
OBSTACLE #1: Born 8 weeks early.
OBSTACLE #2: Shared birthday with his twin brother so he was already small for his gestational size.
OBSTACLE #3: Has a mutation on his COL2A1 gene that causes several types of skeletal dysplasia, and his is closest to what is called hypochondrogenesis.
OBSTACLES #4,5,6,7 and 8: Has spinal instability, ongoing joint issues, hearing loss, significant vision issues, and a floppy airway.
OBSTACLE#9: Intubated at birth
OBSTACLE#10: Received a tracheostomy at 3 months of age
OBSTACLE#11: Transferred to the ICU at Nemours DuPont (an hour away from home!)
So… why am I sharing all of this with you? Well, this is just the beginning of Miles’s story. He may have encountered countless obstacles… but he continues face each one head on and works to overcome them.
So…let’s look at all that Miles has ACCOMPLISHED so far in his 6 years of life.
ACCOMPLISHMENT #1: Became strong enough to be supported by a home ventilator and home nursing support to go home, just 6 days shy of his and twin brother George’s 1st birthday!
ACCOMPLISHMENT #2: Learned to taste foods by mouth (even though he needed a g-tube for nutrition) during the first year of his life
ACCOMPLISHMENT #3: Used his hands to gesture and request for food like yogurt and applesauce during his first year of life
ACCOMPLISHMENT #4: Re-learned how to accept some food orally again after cleft palate split at 18 months of age.
ACCOMPLISHMENT #5: Started sprinting (practicing time off the ventilator) when he was around 3 years old. Now he is at the point where he can spend nearly all of his waking hours without the ventilator.
ACCOMPLISHMENT #6: Sat upright in a highly supportive activity chair at 2.5 years old (despite his large head and short arms and trunk)
ACCOMPLISHMENT #7: Sat upright on the floor without any back support while playing with toys and watching the classroom smart board or TV at home at 5 years old
ACCOMPLISHMENT #8: Transitions from lying down into sitting up all by himself at almost 6 years old
And…just in the time that it has taken me to put this blog together…Miles has accomplished yet another 2 more feats!!! He can now pull himself up into a supported standing position at his walker all by himself (that’s #9), and has gotten strong enough to crawl over to a large couch cushion and pull all of his body weight up onto it (that’s #10).
Every accomplishment that Miles has achieved is testimony to his resilience, his amazing family and his team of health care and educational professionals. Together, we continue to imagine what he CAN do, not what he CANNOT do.
When people ask me what I do for a living, I tell them that I am a pediatric PT that works with children with complex physical and medical needs. Frequently, I am asked, “ Doesn’t your work make you sad?” But to the contrary, I find it wondrous to work with children like Miles who are able to overcome obstacles and accomplish so much more than some people may have ever thought would be possible.
Miles, thank you for being such a fighter. We at Easterseals are behind you 100%, and we will continue to watch you hurdle through more obstacles and accomplish so much more accomplish in your future!