When Dreams Come True – Occupational Therapy Assistant Alumni Story of Successes

Abi Swidergal found her dream job combining love for horses with her degree as an Occupational Therapy Assistant (OTA). Abi Sidereal was all about horses when she was a kid.

I grew up riding and taking lessons and then eventually found up owning four horses, showing their magical creatures. They provided me with a sense of strength and belonging.

She was so hooked on her love for these animals, that she decided to make them her focus in college.

Equine operations and horse management — that’s all I really wanted to do. So it was the perfect fit for me at South Suburban.

Although Abi was well-educated in her field upon graduation, she felt like something was missing, so she looked into becoming an occupational therapy assistant to enhance people’s life skills through therapy techniques. She chose to return to her alma mater to complete this goal.

I decided on South Suburban because of the quality of the Occupational Therapy Assistant program there. I craved knowledge and was ready to work hard to prove myself and create a truly impressive occupational therapy assistant resume for my further career growth and development as a specialist.

Abi thought she might find a more meaningful career combining this healthcare profession with her love for horses. She was right.

I work here at Partners for Progress Therapeutic Riding Center — through Pediatrics in Motion. I’m a certified occupational therapy assistant, and we use horses as our tool to provide our therapy. I see changes in my clients very quickly. They are bonded with the animals, there’s a connection. That can’t really be explained.

occupational therapy assistant resume

One of Abby’s clients is 15 years old Charlie Sims. He has been involved with Partners for Progress since he was three. Charlie is a very vibrant young man who at the age of three and a half showed signs of developmental delay. We had him diagnosed and sort enough it came back autism — and I heard about this program. So we started him on horses, because he was so engrossed with animals. It seemed to really open him up. Charlie also gets bodywork to help with the alignment, but the horse is going to help teach his brain about moving evenly. And the changes in his posture are amazing when he sits on a horse. Every single year. That Charlie and my daughter Mary who also rides here have been in this program. They have progressed in a positive way, because they are surrounded by people who work so hard and animals who work so hard, and they’ve adopted that into their lives.

Charlie’s parents not only credit him with the success he’s earned through hard work but employees like Abi whose dedication to her craft helped their son excel with everyday life skills through the therapy she provides.

Charlie sweeps, he cleans, he helps wash the horses — it has transcended into the home life. I’ve explained to him: Charlie, you know, you can’t just ride a horse and then walk out the door. You need to help. That horse and you need to help the people. That help you — and so that’s the same thing at home.

Charlie has a phenomenal family. It makes me feel humbled. That these families allow me to work with their children.

If it wasn’t for people like Abi and these incredible horses, you would never be able to see what accomplishment some of these incredible kids can make in the world. She has a beautiful gift of being able to help with the sensory issues but also the physical issues and that’s a very hard thing to do. Her horse experience, I think has been, you know, a blessing for this place. Because she understands the horse and the way it moves. So she’s able to tap into that experience and use it in her therapy, and as a parent, I love seeing that.

My degree from South Suburban in Occupational Therapy Assistant got me to where I am.  I couldn’t do my job without that degree, licensure and forehanded help I got from professional resume writers near me. And having my equine operations to back it up and work in this setting is a perfect match. If. You want to help people and you want to make a difference in people’s lives it’s a great field to be in.

Posted in Uncategorized | Leave a comment

Caregivers as Cooks or Caterers?

In Pew Research survey results, 39% of us (US adults) are caregivers. Yet, as I participated in MedX, I didn’t encounter too many of us. There was one great ePatient Scholar, Erin Keeley Moore (Blog) advocating for her son. It’s not to say that others that I didn’t speak to weren’t also caregivers, but their voice is continuing to be unheard in discussions like MedX.

Do I believe that MedX is a great conference? Yes! I had amazing conversation and interactions – I learned a tremendous amount – I think other participants resonated with my topic – “Being Alexis’ voice” (obviously there was a longer title: Engaged, equipped, enabled, and empowered by LOVE

But we have to endeavor to get more voices into the national conversation. As I was waking up after the conference this morning, it dawned on a me a useful analogy for caregiving.

Caregiving can be like being a short order cook or like being a caterer. It depends on which type of cook you are as to whether you can take time to be part of the national conversation.

Both types of cooks may serve 500 people in a 2 week period. A short order cook is making meals for 30-40 people each day with no set menu and no clear control over the interactions with people from many walks of life.

A caterer may be preparing a meal for 500 people, but with a set menu, time to anticipate and prepare for the event where it’s usually known the kind of people who will be at the event.

(Keep in mind, I’m not a cook or a caterer in real life – but this analogy seemed to work from what I’ve seen)

At this moment in Alexis’ care, we are in the catering scenario – which means we can plan our hospital time – plan our doctor appointments, plan our additions of new doctors, plan our surgeries).

It didn’t start like that, during the first year of life, we were short order cooks – dealing with multiple unexpected in-patient hospital stays, new diagnoses, new urgent appointments, new doctors added at the list moment. And even during her short 7 years, we’ve been thrown back into periods of ‘short order cook’ (either by Alexis or her sister).

I’ll estimate that people who choose short order cook or caterer, have qualities that make them suited for one or the other – which may help them decide.

As caregivers, we don’t decide. And I would argue that we aren’t equipped for handling the role as short-order cook or caterer. So we must endeavor in the future, to appreciate the challenges of the caregiver role. There are too many of us to overlook, and as the population ages, it will be every so much more important.

In future conferences, we must consider how to be flexible for the voice of the caregiver to be present. It’s really not possible to have caregiver voice without extreme amount of planning flexibility – caregivers are already juggling: caregiving, jobs, pressures on fellow caregivers (if they exist) and emotional stress.

Using technology, like University of Minnesota Amplatz Children’s Hospital created for their pediatric rooms – allows caregivers to participate remotely and we should be open to having their participation in a virtual presence in conferences – so we see beyond the voices that are in ‘catering-caregiver’ mode – giving us all an opportunity to learn from ‘short-order-cook’-caregiver mode.
About these ads

Posted in What if Healthcare | Leave a comment

A is for Alexis

Repost of Boston Children’s Hospital Thriving Blog Article (now misplaced in the internet) – from 2012

In college I had three majors, and eventually went on to earn a PhD and MBA. But my biggest life lessons came from my MOM degree. When I was pregnant I found out I was having twins. Baby A and Baby B were growing fine until week 29, when suddenly I didn’t feel well and went to the hospital. At that point, the doctors told me that they couldn’t find Baby B’s heartbeat.

I was rushed to Boston for further testing, where it was determined that Baby A was alive, but Baby B had died.

Two months later Baby A, now named Alexis, was born. She weighed just 4 lbs. We were given a few moments to meet her before she was whisked away to the neonatal intensive care unit (NICU) for monitoring. We then had a chance to say goodbye to Baby B, who we named Kaitlyn. The hospital provided us with lovely print of Kaitlyn’s footprints that we still cherish today.

We were given time to process our grief, but soon a doctor visited our room with devastating news. “Alexis is going to die within her first month of life,” she said. “You should call your family and friends to meet her; she doesn’t have long.” Then she left.

It was a surreal experience to say the least, but two and a half months later Alexis was still in the NICU. She had a long list of medical problems, but the list was overshadowed by her will to live. She was too sick to do much, but she clearly recognized my touch and responded to her dad’s calming songs. Over time her condition improved and we eventually graduated to home care.

As Alexis grew I became increasingly amazed by how far she had come. But despite all she had accomplished so many people continued to define her by her “wrongness”. After all, at just 1 year old, she was dealing with:

Repost of Boston Children’s Hospital Thriving Blog Article (now misplaced in the internet) – from 2012

In college I had three majors, and eventually went on to earn a PhD and MBA. But my biggest life lessons came from my MOM degree. When I was pregnant I found out I was having twins. Baby A and Baby B were growing fine until week 29, when suddenly I didn’t feel well and went to the hospital. At that point, the doctors told me that they couldn’t find Baby B’s heartbeat.

I was rushed to Boston for further testing, where it was determined that Baby A was alive, but Baby B had died.

Two months later Baby A, now named Alexis, was born. She weighed just 4 lbs. We were given a few moments to meet her before she was whisked away to the neonatal intensive care unit (NICU) for monitoring. We then had a chance to say goodbye to Baby B, who we named Kaitlyn. The hospital provided us with lovely print of Kaitlyn’s footprints that we still cherish today.

We were given time to process our grief, but soon a doctor visited our room with devastating news. “Alexis is going to die within her first month of life,” she said. “You should call your family and friends to meet her; she doesn’t have long.” Then she left.

It was a surreal experience to say the least, but two and a half months later Alexis was still in the NICU. She had a long list of medical problems, but the list was overshadowed by her will to live. She was too sick to do much, but she clearly recognized my touch and responded to her dad’s calming songs. Over time her condition improved and we eventually graduated to home care.

As Alexis grew I became increasingly amazed by how far she had come. But despite all she had accomplished so many people continued to define her by her “wrongness”. After all, at just 1 year old, she was dealing with:

  • Developmental delay
  • Plagiocephaly (a flattened appearance in the head or face)
  • Choanal atresia (a blockage of the nasal airway)
  • Microphthalmia (an eye abnormality where the eyeball is undersized)
  • Congenital dacryostenosis (severely blocked tear duct)
  • Cleft palate (malformation of the roof of her mouth)
  • Risk of Aspiration (swallowing difficulties from cleft palate and blocked nostril)
  • Clasped hand deformity/camptodactyly (abnormally curved hand)
  • Upper limb hemihyperplasia (unequal growing of the limbs)
  • Peripheral pulmonary stenosis (a narrowing of the arteries)
  • Bilateral Stenotic ear canals (A narrowing of the ear canal)
  • Cervical spine vertebral body anatomy (fusions in her cervical spine)
  • Hydronephrosis (a backup of urine that causes the kidney to swell)

But no matter how daunting this list looks, her father and I see a different list when we look at our daughter:

  • Joy
  • Love of life
  • Happiness in her world
  • Exciting and social
  • Belly busting laughter

Life with a chronically ill child is not easy. Right now Alexis’ medical records are taller than she is, and the list is growing. But on the bright side, Alexis is growing too. In fact, that was my biggest problem with Alexis’s medical care for so long. I wish more doctors acknowledged the bright side.

As a parent of a sick child, I’m asking medical professionals to think about how their actions impact those they treat, outside of tests and prescriptions. To do that, here are a few things to things to keep in mind:

  • Always acknowledge, appreciate and respect the family.
  • Please understand why we are so anxious to know a diagnosis. We appreciate your desire to be thorough and “solve”
    our child’s problem, but that solution is often just the beginning for us. We’re anxious to know how our lives will change and to find ways to balance that change with parenting techniques that will make our children’s lives better.
  • We need to be partners in the care of our kids. You see them for a few hours every year; we keep them alive for the other 8,755 hours.
  • We know that part of being a team means getting bad news. However, you have the power to layer those conversations with as much hope and understanding as possible. Please do your best to exercise that power.

I know this list can be followed because I’ve experienced it firsthand. After years of treatment and following Alexis through one challenging diagnosis after another, one of Alexis’s doctors recently watched her walk out of her sixth annual checkup, hand-in-hand with her dad. The pediatrician was so moved by all Alexis has overcome she started to cry. She told me later that the tears started flowing because she was so proud of Alexis, so proud of us as parents and proud of herself and her staff for helping everyone get this far.

That afternoon we all saw Alexis not as a collection of wrongness, but as a bundle of hope. We knew that six years after her birth, “A” didn’t just stand for Alexis, it stood for Awesome.

Posted in Uncategorized | Leave a comment

Data Independence Day – July 4, 2015

Independence Day

9 years ago, I spent some time over the summer asking for medical records.

I wasn’t asking for my own, I was asking for my daughter’s medical record. You see, she had ‘graduated’ from the NICU but had spent time in 2 hospitals within 1 network – and we were already at our 3rd hospital.

Fortunately, I knew to ask. Unfortunately, it wasn’t easy. Thankfully 9 years have passed and I don’t remember all of the details – other than I know I had to show up in person at both hospitals. I think I had to pay at one, but I don’t think it was that painful (to the pocketbook). I scanned the pages and created a FYOL document – FYOL = First Year of Life. It’s 4MB and 122 pages.

The reason I’m fortunate is because having the data myself saved my daughter (we can argue if I saved her quality of life or just her life). But most doctors would agree recurrent high blood potassium isn’t an ideal situation. The Story:

So when Alexis was celebrating her 100th day in the hospital and her 1 year birthday at the same time, we were assigned a kidney specialist – but ultrasound didn’t show anything but yet we could leave the hospital for 3 weeks because Alexis had elevated potassium levels. And I thought, hey wait – I have notes from her NICU and ‘step down’ days that show her bloodwork having high potassium too. I had all of Alexis’ paperwork by then, plotted the data and spelled out in an email to the doctors on her team. Sadly they dismissed me. But I referred to Dr Google and had the answer, so I emailed the head of the kidney department and said “My daughter has pseudohypoaldosteronism type II. Who on your staff can see us and confirm the diagnosis and start treating Alexis?” He emailed back even though he was traveling and validated my observations and recommended a doctor on his team

slide6

Without being armed with the knowledge of my daughter’s details and being able to share it with her new hospital, we never would have begun easy treatment with extra sodium.

It’s never easy to diagnose pseudohypoaldosteronism type II, and even more impossible without trended data. And when those trends sit as dots in individual hospitals, it will never be a trend. So the diagnosis was done by a Mom – who did have access to all of the data.  But not without hard work to connect the dots. But then again, it’s my own daughter’s life on the line.

Posted in Uncategorized | Leave a comment

Happy Edison Awards!

I had the honor of representing Philips this week at the Edison Awards. The awards were handed out during the Annual Gala in San Francisco. In the category of Learning Support & Behavior Change, LightAide was awarded the Silver (second place). Here is the Fancy award.

edison awards

Philips HUE was also recognized with Silver Award in their category.

It’s a real honor to have my work recognized by such a distinguished panel of judges! I still really can’t express my excitement and amazement that ‘little me’ – Mom of Alexis could win a real Engineering Award!

People who know me, know “little me” isn’t really just about being Alexis’ mom – I do have a PhD in Mechanical Engineering, but I’ve always worked in Project Management, Supply Chain Management, Finance and Product Management – so to have LightAide honored along side so many magnificent products and services, it’s truly an honor.

But the real beauty is that Edison is recognizing the process we went through to develop LightAide – the close connection with Alexis, the close connection with additional testers, the innovative team at Philips to accept the challenge and to work tirelessly to create a meaningful inspiring device. LightAide wouldn’t be the product it is now without a lot of hard work. And the hardest worker, by far, is my fighter daughter Alexis who is inspiring so many people everywhere.

Posted in Stories of Hope | Leave a comment

Sharing what we’re learning…

In September 2013, I helped launch an innovative lighting product. Who knew? It’s a quiet launch focused on a niche market – kids with visual impairments.

It’s called LightAide, manufactured by Philips and sold to the market by Perkins. We had a tremendous “Lily LightAide Backpacking Program” with WonderBaby.org.

We knew the impact we would have on kids. I had seen it myself in my own two children. I was a believer. What we’ve done in the past year is help to create even more believers – people who can see the cognitive capability of children interacting with LightAide.

“Olivia has never truly had a toy that she has been attracted to enough to remember to play with. When she came home from school the other day, the first thing that she did was run to the LightAide. Cognitively, this modality had such an impact on her that she remembered. Wow, I have no words. I possibly just witnessed a miracle!” –Anna, Olivia’s mom

“Aly loved the LightAide immediately! She was very drawn to the light and movement. The switches helped with her purposeful movement by utilizing cause and effect. Using the LightAide has been an eye opener for me. I have seen the LIGHT. Lights are the key to unlocking my daughter’s learning potential.” –Brittany, Aly’s mom

We believe that LightAide’s success needs more believers. We’ve applied for a panel at 2015 SXSWedu to share our story, “Revealing Cognitive Ability in Visually Impaired”. We’re confident we have prepped a fascinating talk with great presenters – we’re really excited! One small little catch, we need your vote before September 4.

sxsw
Posted in Stories of Hope | Leave a comment

LightAide Locations

Happy Holidays!

I wanted to give an update on LightAide, my ‘day-job’ at Philips. It’s rare that a person finds their way into a ‘passion’ role at the office – a role that uses my education, my experience as a parent and my ability to make new networks work. I luckily have been doing that officially for the past 1 year at Philips, through the launch of LightAide.

So we’ve been launched for a couple of months – with a new technology, in a new industry, doing something very new and different. Inspired by my daughter’s vision and hearing problems. [for a walk down Memory Lane: http://bit.ly/XU5ZG3

Here’s a picture of where we are “located” – please share! You can see more details on the linked Google Map.

LightAide

Where in the World is LightAide?

It’s been a truly marvelous product launch – with great support, energy and enthusiasm provided by Amber Bobnar and www.WonderBaby.org. WonderBaby.org just concluded a Lily LightAide Backpacking Event with Olivia from OH winning after 29,000 votes were cast. Learn more about the Families and their experiences with LightAide.

Overall, the families worked together (across the US) to raise enough money for each child to win a LightAide. The outpouring of support is amazing. I have opened up a fundraiser to help create a fund for additional LightAide units to be made available for families through the US.

Happy Holidays – and many thanks for the children, families, therapists and friends who have helped make LightAide Launch a great success!! It is so humbling to know that a “Mom-invention” is helping support wonderful children, like my Alexis.

Posted in Reaching to Others, Stories of Hope, Uncategorized | Leave a comment

CBS Eye on Education & LightAide Giveaway!

At the end of November, LightAide and Perkins were featured on the CBS Boston Eye on Education segment with Paula Ebben (@PaulaEbbenWBZ). Check out the wonderful video! Thanks Marguerite Bilms and Perkins team for working so hard on testing and distributing the LightAide!

If this little video gets you interested, then guess what? You can win one of your own!!! WonderBaby.org is sponsoring a Holiday Giveaway – and one of the items is a LightAide. So rush over to the website and enter before December 17th!

free lightaide

And for anyone who enters by December 17, you’ll get a 10% discount on the LightAide purchased before January 15. So go go!

Posted in Reaching to Others, Stories of Hope, Uncategorized | Leave a comment

Improving Healthcare from Patient and Family Perspective

As I boarded the plane as a first time attendee for the National Forum on Quality Improvement in Health Care, I was honored to have been selected as an attendee.

I look forward to a continued relationship with the Partnership for Patients’ (PfP) Patient and Family Engagement (PFE) Network as I learn more about the patient and family leaders paving the path ahead of me. As I wrote about in Te Toca A Ti, supporting oneself during hospital time is crucial and requires building lifelines and networks in advance and preparing for the ride of your life. The Department of Health and Human Services is committed to reducing hospital acquired conditions and hospital admissions. I encountered some patient and family members whose lives are severely altered – by loss of life or severe injury. I was inspired by their can-do attitude to help improve healthcare for others.

I was amazed by speakers who shared perspectives for patients and doctors alike. Dr Leana Wen shared lessons from her book, When Doctors Don’t Listen, presenting a realistic view of the doctor-patient interaction with lessons for patients. She offered easy to apply advice and explain why it is important for patients to provide the best information. Dr Nancy Snyderman and Lindsey Nohr Beck shared the intertwined experiences and recollections from both a doctor and patient diagnosed with throat cancer twice. Dr Snyderman and Lindsey shared the medical and personal perspectives of building trust and honest caring relationship.

As I listened to the inspiring stories of partnership, I am reminded of the great partners we have developed over the past 7 years. In one instance, I received a hug from our pediatrician who was so pleased with our daughter’s progress. I am passionate to make sure that our daughter’s care is not an exception; but rather it is a norm that parents have tools to support themselves. I’ve shared and written about how to build a team to discuss with doctors, find a community for support and communicate frequently with our care team. Caring for Alexis, our daughter, is seeing into the future that consolidates silos to care for patients in their single body, cares for patients where they are – home, community, hospitals, communicates compassionately and creates a future for her health and well-being.

Posted in Preparation, Reaching to Others, Stories of Hope | Leave a comment

Te Toca A Ti – It’s Your Turn

People say it differently around the world: It’s Karma, Life’s a *itch, Murphy’s Law — but I’ll just sum it up in “Te Toca a Ti”TeTocaaTi

It’s your turn.

The issue is with health issues, you’re never planning for WHEN “it’s your turn”. For somethings in life, ‘unplanned’ items might be great – like a bonus at work, a winning lottery ticket, great report cards, and an awesome come-from-behind-win. But I’ve really never heard anyone say “It’s my turn to get lung cancer!” or “It’s my turn to get diabetes!” It just doesn’t happen – or at least not around people that I know.

So if health issues always crop up when unexpected, how do we function in the moment they arise?

  1. Build your lifelines in advance. Know of your friends who has your back – who can grab the kids from school? who can runs some errands? who can sit with you at the doctor’s office? who will deal with your mail? As adults, I trust you’ve encountered enough people to know who has your back!
  2. Build your networks in advance. I’m not saying know everyone in the world. As we learned from “6 Degrees of Separation from Kevin Bacon…” – it’s not many connections needed to get from a question or issue you have to someone who knows the answer. On Healthcare Twitter world, we’ve been known to say “You don’t know Jack” – “You have to meet Jack” (hint: google pancreatic jack). Then reach out to him, because you gotta know Jack! The point is, it’s a small world. Use Twitter to help you, as Regina Holliday and ePatient Dave and others did this weekend to help group-think healthcare solutions.
  3. Get ready for a ride. I never wished Alexis’ experience on anyone, because I knew it was a tough road. I can’t say my road was tougher than others, because in some ways – I believe it’s easier. I might have been mentality exhausted, but it was really Alexis’ body doing the fighting. I was also lucky that a lot of Alexis’ struggles were during NICU time when there is a lot of support — doctors, nurses, social workers, other parents, NICU graduates. And we could see the path ahead, we knew what success looked like – a NICU grad. Alexis’ experience and our transformation from that shapes who we are today, the decisions we make, the priorities we take – for me, the job I do. I don’t know how the ride will change you, but I can assure you – it will, will you let it?

I was interviewed in my college newspaper in 1996, saying: “I don’t want to make my life impossible, but I like a challenge.”

Since we all will encounter a healthcare challenge sometime, try to see the possible in the impossible!

Catherine

P.S. One of my ancient Spanish text books was either called Te Toca a Ti or had sections in it called “Te Toca a Ti” (hence the reference). It’s one of my favorite phrases that I like to say, and of course stop myself from saying because I’m not surrounded by Spanish-speaking people.)

Posted in Pain Points, Preparation, Reaching to Others | Leave a comment