Dr. Golda Milo-Manson discusses common sleep issues and solutions in cerebral palsy.
In Episode 2 of Coffee Talk, Nathalie and Jen discuss their experiences with sleep as it has impacted their sons and their lives.
Early diagnosis begins with a medical history and involves using neuroimaging, standardized neurological, and standardized motor assessments that indicate congruent abnormal findings indicative of cerebral palsy. Clinicians should understand the importance of prompt referral to diagnostic-specific early intervention to optimize infant motor and cognitive plasticity, prevent secondary complications, and enhance caregiver well-being.
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.
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.
My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same.
The typical cognitive assessments that are used for children require them to be able to use their hands to point to pictures or hold puzzle pieces.
"Cerebral palsy is primarily a motor impairment so it's really important to look at what the child’s motor function is. Are they developing on the trajectory of a child who has cerebral palsy or are they developing as we would expect a baby to develop? "
Sleep is important to all of us, but it's especially important for infants. When infants go to sleep, they start to create neural networks about what they've been learning during the day. It's estimated that as many as one in five children with disabilities have a sleep disorder, and that's higher than the rate of typically-developing children. Finding sleep interventions for these children is incredibly important so they can lay down their brain networks and continue to learn during their early childhood years.
Receiving early diagnoses or high‐risk for CP classification is a parent priority. Alignment between parents and providers exists for International Classification of Function domains of body functions/structures and activity, but less for those of environment, personal, and participation.
My name is Nathalie Maitre, I work at Nationwide Children's Hospital. I'm a physician and a researcher
Owen is our third baby and after a healthy pregnancy and making it to 38 weeks, I thought we would coast into life with three kids and adapt to the beautiful chaos that is life outnumbered by little ones. Somewhere in between, I ended up watching as my newborn baby was packed up into a life-flight helicopter and whisked away before I even got a chance to hold him. I would do whatever it took to get to Owen at Nationwide Children’s Hospital, I would will him from hundreds of miles away to hang on, to fight long enough for me to get there – and then we could do “whatever it took” together.
Children with cerebral palsy experience brain damage around birth or before birth. So the language of the brain in other words, the way they will move, will be different from typical movements. So by looking at their movements, we will understand that there is something that is wrong in the brain.
Diagnosing cerebral palsy (CP) at an early age is important for the long-term outcome of children and their families.
Early diagnosis of cerebral palsy (CP) is critical in obtaining evidence-based interventions when plasticity is greatest.
Early diagnosis begins with a medical history and involves using neuroimaging, standardized neurological, and standardized motor assessments that indicate congruent abnormal findings indicative of cerebral palsy. Clinicians should understand the importance of prompt referral to diagnostic-specific early intervention to optimize infant motor and cognitive plasticity, prevent secondary complications, and enhance caregiver well-being.
As a physician and researcher, I skeptically looked forward to learning more about mindfulness practice, because there is evidence it helps with stress management, self-regulation, focus, productivity and happiness. As a mom, I felt that weird mix of guilt that I was going to focus on “not-my-children” for a whole day, excited anticipation and anxiety that maybe I would be a complete failure at this. It turns out all the mental baggage I took into the workshop was the exact opposite of what mindfulness tries to achieve. The daily practice has since changed my life.
What we learned from our defensive lifestyle is that it’s normal to feel this way. It is a lot of information to process all at once and it’s an emotional rollercoaster immediately following a CP diagnosis. We realized that our diagnosis wasn’t what defined our child. She is an amazing little girl who is full of personality, she isn’t a fragile flower that needs to be sheltered, and by realizing this we were able to go on the offensive, and attack the challenges head on.
PTSD can be common in parents after a child with Cerebral Palsy has left the NICU. One of the hardest days of my life as a NICU parent was not what I would have expected it to be. It was the day I went home without my baby, after spending every waking moment since my emergency C-section by his incubator. I never knew I had a dream about what it would be like to have a baby until that dream was taken away.
