by Jeanine Johnson

In my blogs, I often write about Easterseals, the students and the miracles I see on a daily basis. Recently I have been thinking about the life coping skills we can learn from Easterseals’ students.  My daughter Autumn, who is currently one of Easterseals nurses, started out as a therapy aid.   She had the opportunity to work closely with the students and I believe it gave her direction in what career she would ultimately choose.  She left Easterseals and obtained her nursing certification.  She knew she would lean toward working with young children.  The opportunity opened and she returned to Easterseals.  Autumn has in the past year and a half been hit with some life-changing health issues.  First, she learned she has non-diabetic hypoglycemia, then was diagnosed with Elher’s Danlos Syndrome and lastly Mass Cell Activation Syndrome) (MCAS).  With each diagnosis, I watched her pivot and adjust to a new normal. 

I try my best to check in to see how she is coping because, while she seems to be adjusting well, I’m sure there are days when it’s overwhelming.  She went from not having any medical equipment to having to wear MAFOs and in order for her not to lose her ability to walk independently, she is required to use a wheelchair for any extensive trips.  Elher’s Danlos Syndrome is a condition where your connective tissue is too stretchy and cannot support your body properly.  I am relieved that Autumn’s diagnosis does not affect her heart.  She was wise enough to join some forums with people who have the same conditions and has been able to get great practical advice from people who are living and functioning with various issues.   

We made a video call to our favorite Easterseals graduate Mung.  (You know he’d make an appearance in my blog somewhere. )  He was confused as to why Autumn used to be able to walk and can’t now.  Autumn explained to him that she can still walk.  She told him that it’s like his muscles are very tight (he has CP) and hers are too loose).  She told him she must wear the mafos for short distances and use the wheelchair for longer outings.  Autumn, Mung and I met up at the Franklin Institute for the Harry Potter Exhibit.  It was Autumn’s first trip taking her wheelchair in an Uber.  (She got enough good advice to pick one that would be easily portable when needed).  Our reunion was as fun as ever. 

We could have never guessed that Autumn’s time at Easterseals would prepare her for what has been a life-altering period.  She said about the students here “They always give us perspective” and in her silly voice said “Ain’t nothing that bad!”  Attitude is everything! I’m grateful for Easterseals and the students and proud of and motivated by my daughter! 

I guess she gets some perks, in the picture below she is in the wheelchair-accessible section at the Elmwood Park Zoo and she’s close enough to “Kiss the Giraffe!” 

By Jeanine Johnson

Easterseals has a way of building lasting impressions and lifelong friendships both among employees and employees and the families we serve. If any of you have read my blogs in the past like here, here, here, here, and here, I periodically give updates on one of my favorite graduates of Easterseals. Since it has been a while, I thought I’d fill you in on what Mung has been up to. 

Covid has put a damper on my semi-annual outings with Mung, but we have managed to stay connected. Thank God for modern technology. It was vital in helping to not feel isolated. His mom texts, sends pictures and short videos of him. I send him gifts now and again to let him know I haven’t forgotten him. It’s hard to believe that he is 10 years old already. While I really enjoyed getting the texts, I was missing the live interaction with Mung so we set up a video call with him, me and my daughter Autumn (school nurse and big fan of his). It was so great to hear his voice and see his face in real time. I am so happy to report that he is still the vibrant, outgoing character he has always been.

He immediately asked how Easterseals has been since he left. He truly misses this place. When asked how he was doing in school, he fell a little silent. So I asked if he is still talking too much in class. (He is quite the talker) He leaned his head to the side, looked at us and exclaimed “I’m really popular at my school”. Autumn and I burst into laughter (as seen in the screenshot his mother took). Autumn responded, “we know Mr. Mayor”. We talked about school, what’s going on in our lives and the prospect of getting together. I won’t lie, I always worry about our children after they leave the nurturing environment of Easterseals. It is quite a special place. It brings me much joy to see he is doing well.

With restrictions lifting and vaccines completed, I am hopeful we will be meeting for an outing sometime when the weather warms. It’s one of the things I look forward to this summer. I am so grateful that his family continues to share him with me. Stayed tuned for more updates!

by Jeanine Johnson

The work experience is so much more rewarding when you choose to become engaged and part of the work community.  One way I have done this besides getting to know the kids and forming awesome bonds, is by beautifying the office.  When I first started working at Easterseals, I asked if it was ok to decorate. It was around the winter holidays, and I wrapped my door like a big gift.  It seemed to bring joy to those around me and things took off from there.

I started decorated my door periodically.  Usually, season related or to mark the start of the school year.  Trying to spread positivity.  These acts afforded me the opportunity to get to know my co-workers.  Where one might not have necessarily had a reason to stop by and chat, the door and bulletin boards now opened up conversations.  I didn’t expect it to take off as much as it did.  People anticipate the door change and often ask me what I am doing next.  That adds a little pressure, but it’s all good. I keep it a secret every time.  Mostly because I am never sure.  I have to scour Pinterest for ideas.  I have expanded to decorating some of my coworkers’ doors.  One casually mentioned that his door had never been decorated so of course I had to remedy that.

At minimum, my door and the bulletin board outside my office will be decorated.  Though, to be honest, no undecorated bulletin board or door is safe from my handy work.  If the feeling hits, it’s getting decorated!

by Sue Lowenstein, MSPT, Physical Therapist 

Well, “The Cardboard Fairy” has done it again! She helped give another child at Easterseals a set of wings by putting her engineering skills and ingenuity to use!  This time, the Cardboard Fairy tackled the issue of a walker that needed some additional support.  

Let me back up a little for those of you that have not read our previous blogs (here, here and here) about the  “Cardboard Fairy.” Her real name is Dorothy Hess. Dorothy is a retired market researcher who volunteers for Easterseals in a very unique way. She uses heavy duty cardboard (sometimes referred to as “tri-wall”), along with various straps, glue, PVC pipe, clips, and whatever other materials might be necessary to create custom-made adaptive equipment.  

Now, let me introduce you to my student, Kayla. She is a sweet and social 4 year old girl who wears purple glasses and has a head full of curls and a smile that can light up a room. Kayla has been attending our approved private pre-school program in Levittown since September of 2020. When Kayla first started preschool, she needed a full wrap-around chest support, along with the sturdiness and width of a gait trainer, to walk. However, as time passed, she approached the point where she was outgrowing this gait trainer. While a larger sized gait trainer could have been ordered for Kayla, it would have been significantly larger and cumbersome. These gait trainers do not fold, which would make it very difficult for her parents to transport it from place to place.  

As her physical therapist, I was eager to help Kayla transition to a more traditional style and smaller walker (and one that is foldable!). However, Kayla was still reliant on the full back support that the gait trainer provided her. Many attempts to have Kayla walk in a traditional reverse walker without a back support were unsuccessful. Even though Kayla was strong and balanced enough to walk with this type of walker, she craved the back support that the Rifton gait trainer afforded her. But there were no reverse walkers available on the market that  came with larger back supports like the one that Kayla needed. 

So I tried my best to create a custom back support. I used pool noodles (PT’s and OT’s love these things), along with some extra cardboard, tape, and cable ties to try to create a custom back support that would be mounted a traditional reverse walker. However, it did not take long for the cardboard to bend and the tape to fall, resulting in an epic fail. 

I decided that this was a job for the Cardboard Fairy! With permission from Kayla’s family, and adhering to Easterseals’  COVID protocols, we were able to bring Dorothy in to sneak a peek at Kayla and my sad attempt at building a back support. Dorothy took some measurements, and left our school with the walker in her hand.  Just a few short days later, what to my wondering eyes appears on my phone but a video of a lightweight but sturdy back support designed to fit perfectly onto the reverse walker.  It is made out of the tri-wall I mentioned above.  It snaps easily into place onto the walker, and there are two additional straps to help it remain stable and in place for Kayla when walking. It can also easily be removed to allow the walker to be folded and transported by her caregivers. And to top it all off, Dorothy painted it purple to match the color of the walker and Kayla’s glasses!!! 

Kayla’s parents and Dorothy and I are thrilled to report that Kayla took to this back support and the walker very quickly, and she is now WALKING INDEPENDENTLY all around her home and in the hallways of her preschool. The Cardboard Fairy did it again…she gave another child a set of wings (this time in the form of a purple back support) so she could take off!!! Well done, Dorothy. Kayla…you keep on walking, girl!!!!  

by Adrienne Aiken

I became a part of the Easterseals family in 1999. In 2000, I wanted to find a way to celebrate the Bucks County Division staff and let them know that they are appreciated. I reached out to our families that we service in the community and in our Approved Private School, to see if they would be willing to write a letter to say “thank you” as part of Staff Appreciation Week. We provided a colorful piece of stationary to families and they responded by sharing their love an appreciation on paper. The letters were hung in the hallway for staff to read and the response was better than I could have imagined. There were smiles, tears of joy and laughter in the hallway as staff read through the letters.  Some parents shared with me that this project was the first time they wrote anything about their child’s special needs and that it was cathartic for them. Since then, I have continued the tradition and kept every letter given to us.

The pandemic has been quite a challenge for all of us and I struggled with how I could provide some sunshine to staff this summer. I decided to pull out the binder with all of the testimonials from our Easterseals’ families that were collected since 2000, and hang as many up in the hallway as I could. The hallway is currently labeled as “The Hall of Thanks,” for the rest of the summer.

 Hopefully seeing the old pictures of the little faces, artwork and hand prints that families added to the letters, will bring smiles to all everyone that reads them.