Dr. Therrien told us he would be there for our family and he referred us to Children’s Specialized Hospital.
Pat O’Hanlon is the Manager of our Family Faculty team at Children’s Specialized Hospital. In 1990, Pat and her husband, Ken, adopted their son Kenny. At six months old, Kenny was diagnosed with Cerebral Palsy and referred to CSH where he received outpatient therapies until he was discharged to adult services in 2011.
Pat and Ken continue to serve as Kenny’s primary caregivers at home. In observance of National Caregivers Day, Pat, Ken and Kenny chatted with us about their journey.
CSH: Pat, can you provide some background on Kenny’s diagnosis and how you came to Children’s Specialized Hospital?
Pat O’Hanlon: When Ken and I got married we wanted to start a family right away. After trying for years with no success, we decided to pursue adoption. That’s when we learned about a baby boy in a NICU in Texas who was born premature at 28 weeks. Both Ken and I said, that little boy is going to be our son, Kenny!
We got all our paperwork done as quickly as we could and then went to Texas to meet our son. It was the best day of our lives! After a rocky start, Kenny did a little better every day and after three months in the NICU, we brought Kenny home to NJ.
We started to settle in to our new life as a family of three, with Kenny hitting milestones as he continued growing and getting stronger. When Kenny was four months old, he started to smile. I remember his first smile like it was yesterday. It was beautiful!
At six months he was a happy baby but we noticed he couldn’t sit up, hold his bottle or a rattle, and he still had very bad reflux making eating challenging. He would position his legs straight, not a frog position, and his arms were always bent at the elbows. Our pediatrician at the time sent us to a pediatric orthopedic doctor, Dr. Therrien, who happened to also work at the orthopedic clinic at Children’s Specialized Hospital. It was Dr. Therrien who over time shared with us that Kenny had cerebral palsy and he was a spastic quadriplegic. Dr. Therrien told us he would be there for our family and he referred us to Children’s Specialized Hospital.
At CSH, Kenny received physiatry, primary care, neurology, psychology, neuropsychology, bracing, and rehab tech services, along with physical therapy, occupational therapy, speech and feeding therapy. We became a Children’s Specialized Hospital family. Thank goodness we did! Everyone from the very beginning in 1990 until the day Kenny was discharged to adult services in 2011 only focused on Kenny’s strengths, which are numerous. Super social and engaging, compassionate, with a great sense of humor, Kenny loves living his life. At CSH the vision is that all children will reach their full potential. That differs from child to child. In Kenny’s case, he went to infinity and beyond! We couldn’t be prouder and we know the best is yet to come!
CSH: What does it mean to you to be a caregiver?
Pat: When I was a little girl I never thought, when I grow up I want to be a caregiver. When Kenny was first diagnosed we had so many appointments and were super busy every day. As Kenny grew and became a toddler, I began to understand that I would be taking care of him in every way for the rest of my life. He couldn’t sit, crawl, or walk. He couldn’t hold anything in his hands. He couldn’t feed himself. He didn’t talk. In the beginning I was overwhelmed and scared a lot of the time.
Kenny was always happy. He loved when I read to him or sang to him. He loved going to ShopRite or Kohl’s and he loved Game Stop (still does!). Little by little I realized I was so blessed to have such an amazing son! He learned to use a language board at 3 years old and had his first augmentative system at 5 years old. He said the pledge of allegiance at his preschool graduation using his device.
In my heart I believe God brought Kenny to Ken and me. There is no way I would have ever found Kenny in Texas. I can’t imagine being anything other than Kenny’s mom and caregiver. If I feel tired or if caring for Kenny’s needs seem a little hard I just think to myself how patient Kenny is letting me whine a bit, or “huff and puff” as I’m doing his care. Kenny always says, “Thanks mom”.
It’s a very special privilege to be a caregiver. It puts everything in perspective. I’m so grateful!
CSH: Pat, how did you come to join the Family Faculty team?
Pat: In December of 2005 I got a call from one of our Patient Care Coordinators who shared that the hospital was beginning to hire families that bring their children for services at CSH as staff to sit side by side with them as the care for their patients and families. This sounded wonderful to me so I said yes, I would love to! I started with just 2 hours a week and shared our family’s experiences at the hospital and shared from a family’s perspective what it is like to receive services. Very quickly two hours changed to 8 hours, and 8 hours changed to 16 hours. Today, I’m a full time employee committed to patient and family centered care; to helping and supporting all our patients and families, and all of our dedicated staff. With our team, I round on our inpatient units, participate in various committees and task forces to bring the family voice to the table, review materials that go out to families, partner with staff to create valuable resources, along with many other opportunities to assist, support, mentor, and help our families and staff.
CSH: Pat, you mentioned you were Kenny’s primary caregiver for quite some time and now Ken has stepped in to the role. What was it like transitioning out of being the primary, daily caregiver?
Pat: I hated turning Kenny’s care over to my husband! It was so hard for me to watch him do things his way and not mine. I think I was very jealous the first time Kenny called “Daddy” from his bed when he needed something in the middle of the night. That’s when I knew Daddy was the new primary care giver. I had to get over myself; I was now working fulltime, and my husband supported me working because he knew it was so important to me. Plus, Ken Sr. is an excellent caregiver, I hate to admit it, but better than me! Now, we both care for Kenny. It’s great!
CSH: Pat, what makes Ken such a wonderful caregiver to Kenny?
Pat: My husband is an amazing man; honest, loving and good. I think he is a better caregiver than I ever was. He’s so strong so he can still lift Kenny. He has put together a routine for them both, down to a science; getting him up out of bed, toileting, shaving, brushing his teeth, showering, dressing, grooming, feeding, and changing video games every day, all day. They both always look so happy and handsome. They have their private jokes, and when they both get that twinkle in their eyes I know I’m in trouble. Ken takes Kenny to visit friends and relatives, and together they brighten others days. Ken takes Kenny to his doctor appointments and partners with his doctor to help Kenny. All three of them have a great relationship thanks to Ken.
My husband also figured out how to be caring without being a push over. (I can never say no to Kenny!) Sometimes I overhear their conversations and Ken will explain why he can’t buy Kenny a new game and I hear Kenny saying, “I understand”. When it comes to things like that, Ken can be a little stern so Kenny bought him a t-shirt that says, “Don’t make me use my caregiver’s voice!” I’m so proud of both my guys. “K2” as they are known (Ken Sr. and Ken Jr.) They are two very special people who bring out the very best in each other. I’m so grateful to have them both in my life.
Another blessing for me was to step back and realize I’m not the only one who can take good care of Kenny. I needed to learn that because someday I won’t be here and others will have to take care of him. Now I know that can work.
CSH: Ken, what did you admire most about Pat when she was Kenny’s primary caregiver?
Ken O’Hanlon: I remember a time at a special education family council meeting when my wife was asked to talk about Kenny’s disability and special education needs. My wife began by talking all about Kenny’s amazing abilities. She never mentioned a deficit. Pat always focuses on Kenny’s strengths and what he can do, and that trickled down to Kenny giving him great self-esteem and confidence. That’s all her!
CSH: Kenny, what do you love about your mom and dad? What is it like having your parents as your primary caregivers?
Kenny O’Hanlon: I give my mom and dad an A+ as my caregivers!! They are getting old, but they are my best friends. I love my Mom and Dad so much. They take could care of me and love me so much! I love them so much too. They are nice. They tell me they love me every day. They are number 1 in my life. They have always been a blessing to me.
CSH: Pat, Ken, What would your advice be to other families who may be embarking on this journey?
Pat & Ken: It’s hard in the beginning. We as a family began to do better when we found our way to the Special Needs Primary Care Practice and CSH, and together with Kenny’s primary pediatrician, Dr. Aronsky, we built a great team for Kenny.
All of us together found great schools and programs for Kenny. Over the years Kenny played in a challenger sports league soccer, baseball, and basketball, spoke at fund raising events for CSH, participated in other volunteer opportunities, even traveled to France, Florida, and Atlantic City.
During the hard times, surgeries and hospitalizations, we were all in it together helping Kenny and each other get through. Our advice is to create your team and then be sure to let them in. You can’t do this alone. You shouldn’t want to. When you understand and believe that, everything gets better.
Pat: Second big lesson learned for me (I hope it doesn’t take you as long to learn as it did me), let your child be who they are. Let them be comfortable in their own skin and follow their own dreams. I think for a while I kept trying to make Kenny into someone he wasn’t. I would get him tutoring so he could do math problems better because I wanted him to go to college. When I just let Kenny be himself, everything began to fall into place. He attends an adult program that he loves. He has friends. He even lived in a supervised apartment for a while, and I know he will again.
CSH: Kenny, what are some of your favorite things?
Kenny: Playing video games, doing zoom meetings with my friends, shopping at the mall and Jay 2 Video Game Store in Clark, spending time with my parents, eating delicious food with them and helping them by bringing the dishes to the sink on my tray and carrying in groceries from the car on the back of my wheelchair, and movies. Top 5 favorites are Godfather 1&2, Sea Biscuit, Cinderella Man, Silence of the Lambs, and Titanic.
CSH: What was your favorite part of Children’s Specialized Hospital?
Kenny: All the people I met. Everything Friday Night Fever. PT with Thea Jack. Fun with Theresa from Rehab Tech. Being able to do my own registration in the lobby in Mountainside with help from Gabby. Dr. Diamond and our very funny, private conversations.
CSH: Pat and Ken, what is your greatest hope for Kenny?
Pat & Ken: We hope Kenny is always happy and healthy. We hope he is always loved and cared for. That he has something meaningful to do in his life, and that he has his family, friends, and incredible team surrounding him always. We hope Game Stop never goes out of business and that WWE continues.
CSH: Kenny, what is your greatest hope?
Kenny: To own a video game store. I hope to go to Disney World again. I hope the Giants have a great year and win someday.