Category Archives: Blog

Camp Smiles – Your Area

By: Anita Howell

Camp Smiles turns 3 this year!!! We are now Camp Smiles – Grand Strand and operate as our own stand alone nonprofit. We have a proven system, community support, and an amazing team of people. Camp Smiles Grand Strand is set to be around for years to come. Now it is time to turn our attention towards helping you start Camp Smiles – Your Area.

If I were standing beside you as you contemplate taking the leap, I would grab your hand and jump with you. Before we jumped, I would tell you that some people won’t see your vision and that’s ok. You will also find people who expand your vision to new heights beyond your wildest imagination.

Group picture with the King, our kids and Camp Smiles staff.

The first year will stretch your faith the most but we hope to make your start easier by sharing our tips, camper/counselor applications, schedules, letters, etc.

Your Leap, Step #1:

Ryan meeting the King from Medieval Times!

Recruit a team – as you brainstorm for those who might join your team, remember parents, teachers, local universities/technical colleges, charter schools, churches, etc. Also, think about reaching out to a special needs camp in the next county to see if they have guidance on local funding and assistance.

Camp Smiles Grand Strand is successful because we have an amazing team that includes parents, a CPA, special education teachers, and college students. Each member takes their part and runs with it. Of course, fundraising is everyone’s responsibility but each uses their gifts and talents in different ways even when it comes to fundraising.

Music Therapist, Sarah, singing about Morgan’s favorite animal, her dog.

Step #2:

Seek community partners like therapy clinics, local higher education programs, the local school district, businesses, etc. Those partnerships have meant support in a variety of ways. With those partnerships we have gained loaner equipment, financial support, community awareness, services, meal donations, supply donations, and free activities for our children. Additionally, those partnerships look impressive to the grantors and donors.

Step #3:

Meet with the team to brainstorm and develop your mission. Ours is to serve children who have no access to other camps in the area. Who do you want to reach? What age group? What needs can you cover? Where will you find those you seek to serve? Who are your potential partners? What connections do each of you have?

Jacob meeting one of the therapy dogs during a visit from Therapy Dogs International.

Step #4:

Consider seeking a reputable local nonprofit as a partner. The support of this partnership will significantly reduce the workload during the busy first year. We partnered with Coastal Carolina University and they received donations, processed payroll, and processed vendor payments. This also delayed the work of completing the necessary paperwork to establish Camp Smiles Grand Strand as a nonprofit.

If you choose to partner with another nonprofit, seek someone with a good reputation to protect the funds. This will also give more credibility when submitting grant requests and holding fundraisers. We relied heavily on the reputation of the university during the first year. Now I’m stunned at how many people know about Camp Smiles. I’ve even had people I didn’t know come up to me and Ryan to make sure that I knew about Camp Smiles.

Kennedy enjoying art time.

Step #5:

Start fundraising early, at least 9 months to a year out. Potential funding sources for special needs children include Knights of Columbus, your state’s Department of Disabilities and Special Needs, and foundations in your area. Go online and search, “grant your county” and “foundation your county” to see what is available. Also, many local restaurants will have community nights were a portion of the proceeds will go to a designated nonprofit. Thankfully, we have been able to avoid the need for tuition but it is an option we consider each year.

These steps will get you well on your way. Many of the points above would also apply to other programs that you envision. Whatever your vision, seek out support in the community. I think they will surprise you. Let us know if you have questions, hurdles, reservations, and successes.

Olivia enjoying the pool during our Camp Smiles Birthday Party.

Praying for great successes!

Anita

Writer’s Profile
Anita and Wes have been married since 1988 and have three children, CP Warrior Ryan, RN Emily, and Emily’s husband Caleb, aka Mr. Bethea. You can reach her at AnitaHowell2014@gmail.com or on her website, AnitaHowell.MyOilSite.com.

Are These Crazy Little Oils Really Effective?

Essential Oils Show Seizure Improvement for One Boy with CPBy: Anita Howell

As a hard core skeptic and Mom to a child with special needs, I’m often torn between responsibly managing finances and leaving no stone unturned in helping our son, Ryan. Even with so much chatter about essential oils, I was still skeptical. However, a sweet friend gave us an essential oils starter kit and it didn’t take long for the skepticism to melt away.

We have been using essential oils on our son since September 2014 and I have gone from skeptic to passionate advocate. We apply essential oils topically several times a day, diffuse lavender in his room at night, and let him inhale oils as needed.

Since starting, he sleeps better, he is happier, and he lets me rub his back and hold his hand. Love, love, love holding his hand! We still get the irritated look from him at times but it is far less often. Though he only has a few words and can’t give us specific feedback, his response is undeniable.

While he was stressing on a field trip, I pulled out a bottle of Brain Power and he immediately began to scan visually looking for the bottle and then stopped to inhale once he found it. After inhaling for about a minute, he grinned and let out a sigh. I turned around to see his teacher stunned and wanting to know what was in the bottle. We are forever thankful for Young Living!

If you are considering using essential oils, and I hope you are, here some tips that I’ve found helpful along the way:

1) Just as I am not a doctor and not qualified to diagnose, treat, cure, or prevent any disease, you must remember that neither are those whom you may find in social media groups. Do your own research and address your concerns with your child’s doctor.

2) For individuals with Epilepsy, there are some smells that should be avoided because they can be overstimulating. This isn’t limited to essential oils but is certainly a consideration. According to Epilepsy.com, the following should be avoided if you have Epilepsy:

  • Eucalyptus (Eucalyptus Globulus)
  • Savin
  • Fennel
  • Tansy
  • Hyssop
  • Thuja
  • Pennyroyal
  • Turpentine
  • Rosemary
  • Wormwood
  • Sage
  • Camphor
  • Wormwood
  • Cajeput
  • Camphor

Note: Remember to review essential oil blends for single oils that may be included. I’ve found Eucalyptus to be the most common smell that I have to watch out for, since it can be found in items like scented Epsom salt. In addition to natural plant smells, be even more mindful of dangerous chemicals that are found in household cleaning supplies.

3) Essential oils are powerfully concentrated. Most oils should be diluted with carrier oils prior to using on children. Thankfully, this is more cost effective as well.

4) Citrus oils, when applied topically, can make you more sensitive to the sun; therefore, they should not be applied topically prior to being exposed to direct sunlight.

5) I’ve found it helpful to introduce one oil at a time and keep a journal on results. This helps identify oils that are proving to be helpful and determine those that may not be best for his body.

6) Select a company who avoids chemicals and submits their oils to third party testing for purity and potency. In our research, we found Young Living Essential Oils to have the greatest control.

We have found that these beautiful oils can support our muscular system, circulatory system, endocrine system, respiratory system, immune system, hormones, brain health, digestion, rest, and emotions.

To follow our journey and find out how to:

  • Affordably replace toxic cleaning supplies with all natural cleaners
  • Use essential oils
  • Make a spray that stops the mildew that ruins our kiddos’ clothes
  • Get more information
  • join our team

Go to anitahowell.myoilsite.com. We would absolutely love to have you! Even with the struggles we face, we can lead a beautiful life. And even with your crazy special needs schedule…we can fit in a convenient online class to meet your needs.

Patient-Centered Care: A Must Have for Our Kids

By Lee Vander Loop, Editor CP Family Network

When you read the words “Patient-Centered Care,” what comes to your mind? When I first encountered the phrase, I was confused. Shouldn’t all medicine be ‘patient-centered’ since it is about the patient, and if this is new, what was the approach before?

CP Research Study Seeks Parents & Caregivers from CP Community

These questions need answers. That’s why I was very excited about the nationwide study about patient-centered care. CPRN and CP NOW Foundation are embarking on a project funded by the Patient-Centered Outcomes Research Institute (PCORI) to help develop a community of people committed to the principles of patient-centered research for CP. Research CP is an educational series and agenda that will culminate in a one-and-a-half day workshop in Chicago that will bring together people from the CP community with clinician researchers to set a research agenda for cerebral palsy.

Best of all, they are asking parents and caregivers to participate and we’re honored to present this opportunity to our community. Registration for the first webinar is now live, so sign up today! A survey to collect top research questions and outcomes will be included in this project. The results of this survey will provide essential input for the workshop where participants will synthesize this input into a prioritized research agenda for CP. Completing this survey is an opportunity to have your voice heard in what’s important to you regarding the future of CP research.

Communication is Key with Doctors, Patients and Families

In 27 years of caring for my daughter with CP, I never heard the phrase “Patient-Centered Care” mentioned in conversations with a physician or clinicians. As I proceeded to research the topic, instances of doctor appointments with my daughter came to mind. As I reflected back on my 27 years of interactions with the medical community, I could easily identify appointments that reflected a ‘patient-centered’ approach and those that did not.

I was amused to discover that, although I was unaware at the time, many times I had forced the physician to have a ‘patient-centered’ approach in their interactions with me and decision-making issues regarding my daughter, through dialogue and communication. I had educated myself on my daughter’s multiple medical issues and easily communicated my concerns and questions to them.

Focus Turns Toward Patient-Centered Care in Medical Community

Before this initiative became a focus in the medical community, medicine was considered ‘physician-centered’ and doctors practiced a ‘community approach’ with little or no regard to a patient or parent’s individual needs or wishes.

The IOM (Institute of Medicine) defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.” Picker’s Eight Principles of Patient Centered Care defines the primary aspects of patient-centered care.

In the article ‘The Values and Value of Patient-Centered Care’, published in the Annuals of Family Medicine, the author describes Patient-centered care as a quality of personal, professional, and organizational relationships. I consider the most important word in that phrase to be ‘relationships’.

When meeting a new physician, there’s always an initial awkwardness and communication challenge. Since the foundation of ‘patient-centered care’ relies on communication and mutual respect between the child’s caregiver and physician, it’s imperative that these initial hurdles be overcome.

Parents Need to Embrace Vocal Role with Their Child’s Physicians

As parents and caregivers to special needs and often non-verbal children, we must be the voice for our children. We must establish a rapport with the physicians and clinicians who will aid us in the understanding; decision-making and resolving of the medical challenges so many children with CP face.

With the time constraints faced by physicians, it can be a challenge to develop the dialogue needed to establish the partnership that is the basis of a patient centered approach. Parents and caregivers can help this process by researching and obtaining as much information as possible about their child’s condition. Be prepared. Make a list of your questions and concerns. Don’t be afraid to ask questions! Physicians are not mind readers. It’s the parent’s role to educate the physician on their child’s individual needs. You are the most vital part of the team when making decisions regarding your child.

Throughout the years of caring for my daughter and interacting with the large array of doctors and nurses that helped me maintain her quality of life, my relationship with her primary care physician and specialists evolved. Our relationship had become not just one of partnership and solidarity, we had become family, and when it became evident that the end of my daughter’s life was near, they wept with me. They were my hero’s and will be for the rest of my days.

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