Making the impossible a reality for our kids

Friday Night Fever (FNF) is a program that was started over a decade ago by two of our employees – Sheryl Manier and Michelle Lee. Their premise was simple; they had adolescents and young adults who were doing well in therapy who had no real social circle outside of their immediate families. Today, the group consists of young people between the ages of 13 to 21 years, interested in supportive recreational or social activities.

The concept was that they would host one group activity each month and invite these kids to attend. The program was so successful that it expanded to Toms River, where Laurel Leithauser took the charge.

We now have two big programs in Mountainside and Toms River. The program is led fearlessly by Kaylee McGuire (Rec Ther, Mtn), Carolyn Romond (Rec Ther, TR 94 Stevens), and Bobbi Jo Pansier (Rec Ther, TR 94 Stevens). The program is staffed with volunteers – many of which are staff at Children’s Specialized Hospital who give their time for these kids. Groups are kept at a smaller scale, to provide a more typical feel when the events are held in a more public setting, with approximately 30 people in a group.

The activities that the team arranges for each month are varied from a prom – which incorporates volunteer expertise from the event planners association – to holiday shopping with the Elizabeth Police Department, visits to  New York, yoga and all sorts of fun things typical teens like to do together.

The teenagers and young adults who participate in FNF have a variety of or sometimes multiple special needs, such as cerebral palsy, seizure disorders, autism spectrum disorders, intellectual challenges, and traumatic brain injuries. Most importantly, in FNF they help the kids accomplish what they thought they couldn’t do.

Would you believe me if I told you that one of the trips the FNF group took recently was a camping trip where each attendee zipped down a zip line?

Well believe it. Here is how Kaylee remembered the event:

The overnight camping & zip lining trip exemplified everything that Friday Night Fever & Children’s Specialized Hospital is about—helping our members break through limitations that the world places on them & help them recognize their abilities. There is something truly magical about being so close to nature. It was a bonding experience for the teens as well as the staff that volunteered. It was quite an accomplishment for our group—one that I use now to remind myself of what we can do, and to inspire our team to push the limits for future events & programs.  

 

It is a huge amount of work to plan each excursion, but what it has done for our kids – is truly amazing! Both the volunteers and the kids who attend have developed lasting friendships and learned how to play. There have been teenage romances and even a few broken hearts.

It has been truly amazing to watch the program grow and to see how these kids have learned to love and care for each other. Annually, FNF conducts a graduation ceremony recognizing program participants for accomplishments. Past participants have moved on to greater things, including college. It is because of the support of a program like FNF, that these members have built such strength.

My favorite memory is the Shore Dreams event, where the boating organization donated their time and boats to take our kids out on the ocean.

This was one of the first events I attended, and one of the kids in a wheelchair had never been in a boat before. She was so excited; she screamed (happy screams) the whole time. The unmitigated joy on her face is something I will never forget. 

If you’re interested in volunteering for an upcoming Friday Night Fever event, please contact Kaylee McGuire at kmcguire@childrens-specialized.org.

Do you have a favorite memory – either through Friday Night Fever or Children’s Specialized in general – that makes you smile when you think back on it? Please share below! 

If a tree falls in the woods…

Often during our Senior Leadership meetings, we discuss how best to educate people about the great work we are doing. I have used the age-old analogy that if the tree falls in the forest and no one hears it, does it matter that it fell?

If we are doing all this hard work, and we are not yet known nationally, does it matter? Of course the short answer is, of course it does. The work we are doing benefits the children we are fortunate enough to care for and that means the world – regardless of who knows it.

Dr. Yvette Janvier (Medical, Toms River) and Dr. Jill Harris (Autism, Fanwood) recently confirmed that their article, “Screening for ASD in Underserved Communities: Early Childcare Providers as Reporters,” will be published in the national journal Autism. The article examines the identification of Autism in children who live in the inner cities. This work was so very important because of the impact on the children who are under diagnosed. but also because the national recognition makes people start to ask, “Who is this Children’s Specialized Hospital?”

I can’t tell you how many times I have been told, “I had no idea that you served that many kids or had that many physicians!”

We recently found out that Dr. Manuel Jimenez (Developmental Behavioral Pediatrics) was selected by the Pediatric Society to present at the Plenary Session on his work on Adverse Childhood Experiences, Literacy, and Kindergarten Problems this April.

I was so excited to share his great work with you all. This is the kind of stuff we need to shout from the rooftops!

This work was started while he was a resident at the Rutgers Robert Wood Johnson Medical School. At this time, he created a program at Elijah’s Promise – the Soup Kitchen in New Brunswick – to begin focusing on children who were served there.

He helped to provide books to these children and encouraged their families to read to them. He continued his work as a fellow at The Children’s Hospital of Philadelphia, and returned to RWJ as the first Chancellor Scholar for the Rutgers Robert Wood Johnson Medical School, where we share his time.

What Dr. Jimenez found was that the average child who was coming to the clinic at Elijah’s Promise had only a few books, where the average child not living in poverty had hundreds of books. It is one of the most essential factors in preparing these children for kindergarten.

We are so very proud of all of the hard work that you all do each and every day, and all of your efforts to help us make more families aware of the great things that happen at all of our sites!

Early Bird vs Night Owl

In January, I shared a bit about my early morning routine. I’m up at 4:15 a.m., out of the house by 4:30 a.m., and off and running! But guess what, if you challenged me to stay up until midnight I wouldn't be able to do it!

Since we value teamwork here at Children’s Specialized Hospital, it got me thinking how an early bird and a night owl can learn from each other!

My best friend is a night person, as were her mother and father. I lived with her folks after college for a short period of time when I was interning on Capitol Hill. Just like now, I would be out of the house by 5 a.m. so I could meet my friends to run on the National Mall in Washington DC  (see, I’ve always been a little OCD in keeping myself fit).

I would get home at night to end my day and rest, but at 8 p.m. they would be just starting to cook dinner. Sometimes they wouldn’t eat until 9 p.m., I was already sound asleep by that time! After dinner, they’d all hang out and carry on until the wee hours of the night.

As an early bird, I couldn't even begin to understand. 

What I like about the morning is the quiet. Usually there is little to no traffic, no one looking for you or trying to take away some of your time (although I have done 4 a.m. conference calls, although they are rare).

The morning time is really your own time, whereas the rest of the day tends to be about working as a team with other people or with those who may need your help.

For me, the morning is all about keeping a schedule—early to bed, early to rise—and keeping a consistent pattern. Having a schedule doesn't lend itself to spontaneity (remember, I’m a creature of routine).

So my tip for those who want to be an early bird: make a plan and keep it. Get to bed early, and stay away from caffeine after 3 p.m. Turn your bedroom into a peaceful space— no TV, no games, etc.

If you want to become a night owl, well… I’ve got nothing!

What are your tips and tricks for the morning? Or if you are a night person - how do you get it all done when you are up so late? Seriously, I’m curious.

Amy Norton: Phenomenal baker and star of the autism and feeding teams.

I’m sure I’ve said it before, but one of my favorite blog posts is when we publicly recognize a member of our team.

Amy Norton (Intake Coordinator, Mountainside) is notorious for bringing in delectable treats for her colleagues. It’s one of her passions that she happily shares with the ones she cares about, and something that was self-taught!

“I was a stay at home mom for many years and baking was something I loved to do with my children. My most memorable moment is when I walked into an autism team meeting carrying some type of home-made treat and the team smiled, waiting to see what I brought in. Over the years, many traditions have involved these goodies and that makes me smile,” she said. 

In addition to being a phenomenal baker (according to the autism and feeding teams), Amy coordinates feeding services. In the autism department at Mountainside, she works in the Developmental Screening Program, and as coordinator of our community-based free early developmental screening program funded by Kohl’s where she organizes screenings in the community as well as training to day care and preschool providers.

It seems she is QUITE the multi-tasker!

Amy is a passionate advocate and works with a number of organizations related to low income and other underserved communities. Through her efforts, many of these groups now want to be trained to conduct quick developmental screenings, thus greatly expanding the reach of our clinics and helping to improve early access to care.

Amy is tireless and tenacious in forming community connections and helped get The Statewide Parent Advocacy Network of New Jersey (SPAN) representatives to attend each of the clinics. SPAN assists families who may need a little extra guidance with pursuing additional evaluations.

She designed training and incorporated it into this year’s Kohl’s Developmental Screening programs. She identified the need and coordinated case consultation meetings for the feeding team to help ensure peer collaboration and service excellence.

WOW Amy! You have proven to be such a valuable asset to Children’s Specialized Hospital, especially to the teams you are a part of. Thank you for everything you do.

Do you know someone that should be recognized on Access Amy for something they’ve done at Children’s Specialized Hospital? I’d love to hear! Share below in the comments or send an e-mail to Megan Muller at memuller@childrens-specialized.org.

Worrying solves nothing

I work very hard at not worrying about things I can’t control, and yet I still have more sleepless nights than not. After a night full of watching the clock, I received this e-mail from Nancy Panarese, the parent of one of our patients – Christian Panarese. It was the perfect reminder to me, that everyone  can be taught a lesson from sources where it is  least  expected

Hi Amy-

I hope all is well. Again I find myself e-mailing you about Christian. He is a sophomore, and yesterday his class read an article in the paper about worry and how people worry about everything from what clothes to wear for the day to Ebola and world war. When Christian was asked what he worries about he said, “Well, I only have half a brain so I am too busy living my life and enjoying my life to worry about other things that might or could happen. I take every day as it comes and I am happy every day.”

As usual, the class and teacher were silent. I found this all out because the teacher e-mailed me the conversation that happened in class. Our children are so wise. They never stress about the little things. Thanks for listening to me brag again.

- Nancy Panarese

Powerful, right? Have you been taught lessons from a place you least expected it?

True friends leave paw prints on your heart

I recently read an opinion article published in The New York Times titled “My Mother’s Shadow.” As I was reading it, I cried.

If you have read any of my blog posts over the years or even seen me at a Children’s Specialized Hospital event, you know it’s not uncommon for me to get emotional about certain things. So I guess it’s not really a surprise that this article really tugged on my heart strings.

The article is about the relationships that are built between humans and their pets. It has long been reported as one of the most important relationships that people can have in their lifetime. The bond between human and animal is more than just owner and pet. There is a deep, emotional tie between people and their pets.

As a child, I always had either a dog or cat, usually both. I had a Siamese cat, Cracker, for my first 17 years of life. She was the meanest, but most beautiful cat you ever met. She would religiously sleep with me at night, which was coincidentally the only time she wasn’t scratching or biting me!

My parents, myself, and Cracker.

I loved that cat so much, and when she took her last breath, the heaviness in my heart was matched only by the devastation I felt emotionally. I have not owned another cat since.

I have had multiple dogs over the years. Bow Wow, Tangerine, Brandy, and my last dog Kahlua.

Bow Wow was a mutt who actually roamed around the neighborhood. Apparently each family in our neighborhood had a different name for him. The people across the street called him “Freddy,” for “Freddy the Freeloader.” We all set food out for Bow Wow and wherever he happened to be when the sun set was the porch he would stay on for the night.

Tangerine was a Golden Retriever and I adored her. She was terribly overweight but a wonderful soul. When Cracker (the Siamese cat) had kittens, she would put them between Tangerine’s front paws, and they would all stay within both of their reach. When she passed, I got an Irish setter, Brandy, who unfortunately died of a rare blood condition.

My parents, myself, and Brandy.

My last dog, Kahlua, was a chocolate Labrador Retriever. I had cared for Kahlua’s mother when I was in college and was so anxious to find a chocolate female of my own. When she had a litter, I was hopeful one would be a female and I could bring her home. Out of a litter of 11 puppies, there were 6 yellow and 5 chocolate labs, but only one female. She was destined to be mine.

Kahlua was a great dog. When you hear that dogs take on their owner’s personalities, it was definitely true for Ms. Kahlua. She was fiercely loyal and very high strung.

At the end of the night she would fall dead asleep, but instantly be up again raring to go a mile a minute. During my divorce, I am certain I would not have seen my way through had it not been for her constant companionship. Well, her and a good therapist!

When Kahlua’s back legs finally gave out – something common in Labradors, – I knew it was time. She was in terrible pain, and I couldn’t bear to watch her struggle anymore. That decision still goes down as one of the hardest things I ever did. Her ashes are buried at my parents’ house next to Bow Wow, Tangerine, and Brandy. 

Once she was gone, I could never bring myself to get another. The pain was just too hard.

I am not sure what that says about me – that for as much joy each pet has brought me I can’t see myself owning another. With my schedule now, I can rationalize that I am out sometimes six nights a week for work, and it honestly wouldn’t be fair to them to be home alone most of the time. I often wondered whether it says more that as much as I loved them, I wasn’t willing to risk that loss again.

I know we have a lot of animal lovers out there. I’d love it if you would share your pet story in the comments below. 

A season of childhood memories

Easter and Passover may bring different thoughts to mind, depending on your individual beliefs and life experiences. As a child growing up, Easter was the time of year we always traveled because my parents were teachers, we all would have time off for Spring break.

This time was not only a celebration of reawakening in the church, but for us it was a time when we would visit family or new places.

  

Mom loves gardens, so the trips always involved heading south. We wanted to be able to see the azaleas and other flowers, since they would bloom so much earlier in the warmer climates than they did in New Jersey.

These trips were always times of great joy for me; first because the weather was always warmer than back home, and second because we always stayed in a hotel. I loved hotels as a kid. There was a pool at each hotel, and I remember staying in the water until my skin would wrinkle and my fingers turn blue!

No matter where we traveled each year, Mom always had an Easter basket waiting for me in the morning – yellow PEEPS, spiced jelly beans, Reese's eggs, and a small gift.

In retrospect I have no idea how she hid everything from me the entire trip, and am astounded that she made it all so special every year.

When I was in college I would get an Easter care package, but by then it included practical items such as cans of tuna fish, peanut butter crackers those things you couldn't live without while living in the dorms.

Do you have holiday memories around Easter or Passover that remind you of your childhood? Anything that makes you smile when you think back, or traditions you have continued with your children?