Welcome to That Mom With CP-a space created to celebrate and support mothers with cerebral palsy through shared stories, adaptive parenting tips, and honest conversations about self-care and disability.
For as long as I can remember, I dreamed of being a mama and for equally as long, I just couldn’t comprehend the dream coming true, for me. Yet, I had NO frame of reference or role models for mamas with CP.
Discover how living with cerebral palsy has made me a more patient, adaptable, and intentional mom—and why disability can be a strength, not a setback.
This research studied falls in ambulatory children and adults with CP specifically asking how often they’ve fallen, fall-related injuries experienced, circumstances around the fall, the level of fear or concern about future falls, and the extent to which they do or don’t avoid certain activities due to their concern about falling. This study sets a strong foundation for future fall research, quantifying the breadth and depth of the problem across a large spectrum of age and walking ability.
Dr. Tom Novacheck, of Gillette Children's, describes the characteristics of the 4 types of unilateral, otherwise known as hemiplegic gait, and how the use of clinical instrumented gait analysis can help with treatment decision making.
Dr. Tom Novacheck, Gillette Children's, describes what to look for in each of the 4 different gait patterns seen for those with bilateral cerebral palsy and considerations for each type.
Medicaid Waivers, Katie Beckett or TEFRA are all forms of benefits that an "waive" medicaid financial restrictions for parents of children who have a developmental disability acquired prior to the age of three. Kidswaivers.org has provided a comprehensive, interactive website of all available medicaid waiver programs by State across the US.
Living with CP taught Dr. Kathleen Friel much about educating others about her disability and now about her life threatening diagnosis of Metastatic Breast Cancer.
In this 2022 episode of "Let's Talk CP" host Jen Lyman talks with neurosurgeon, Dr. Debbie Song, and physiatrist, Dr. Marcie Ward about their role in the care of Cerebral Palsy at Gillette Children's.
In this new 2022 episode of "Let's Talk CP" host Cynthia Frisina talks with Dr. Tom Novacheck and Dr. Andrew Georgiadis from Gillette Children's about gait, gait analysis, and what makes Gillette Children's such a special place.
The purpose of this study is to explore the breast cancer screening experiences of women with CP with the aim of identifying factors that could improve screening rates for women with disabilities.
Breast cancer is a major cause of mortality in women. Screening has been known to improve early detection for early treatment. Women with disabilities face many physical and attitudinal barriers to mammogram screenings. This webinar has been created to address the educational needs of technologists and to give women with cp and disabilities visual accurate information about the procedure.
Many people do not know the difference between SSI and SSDI. It can be very confusing for a family or individual to understand what is available, and whether they will qualify. Very often, the recipients and their families do not even know which benefits they are receiving. But it is important to understand some basic information about government benefits. This post will focus on the two most common government benefits and give you a brief overview of how they work.
Setting up a Third Party-Special Needs trust as part of estate planning is essential if the individual with a disability is or may be eligible for means-tested government benefits. A properly set up Third Party Trust ensures that the funds left to the individual, whether through gift or inheritance, are not considered countable assets when applying for means tested benefits
In 2014 the Achieving a Better Life Experience Act was passed. The ABLE account is a tax-advantaged savings account for individuals with disabilities. The individual with the disability is the account owner and anyone can contribute to the account – the account beneficiary, family, friends, even a Special Needs Trust.
A special needs trust is a written legal agreement that enables an individual with a disability to qualify or remain qualified for means tested government benefits, such as medicaid, SSI or even medicaid waivers.
What do you do when you want to help your child but your local providers don't have the resources? You travel for treatment. In this personal story, Sophia's family describes their experiences traveling to Gillette Children's for treatment, including both neurosurgical and orthopedic surgeries.