Saturdays were special as a kid growing up in Port Washington, New York. Saturdays meant Burger King outings with my grandparents, a great big slice of trade-marked Hershey’s chocolate pie for me and piping hot oatmeal for them. And we can’t forget about the Kids Meal toys. But on this particular Saturday, everything was different - at the tender age of five, I started to notice that certain aspects of my life were just off.
I don’t know if this is just me, but my time in quarantine has made me have weird flashbacks to my childhood. As a kid growing up with CP, especially with a speech impediment and mobility limitations, my lifeline to making and keeping friends was through AIM (AOL Instant Messenger, for those of you who are too young to remember) and one of the first video chatting platforms, ooVoo. Fast forward 15 years, many of us are in a similar situation. To slow the spread of COVID-19, most of life has moved online, including friendships.
This fact sheet has been created for women with cerebral palsy to provide answers to some common questions about CP, disability, and gynecological care.
If you have any disability, then you probably have pondered on this question once, or ten times, before: should I self-disclose my disability on the job application form? Unlike going into the job interview, where your visible disability cannot be concealed, the power lies ultimately in you to check that box on the form.
When I was considering going on birth control a few years ago, I wanted to find out how, if at all, my cerebral palsy would cause certain side effects. However, to my dismay, there weren’t any resources available that addressed the complexities a woman with cerebral palsy might encounter when going on any form of birth control.
There is insufficient research on adults living with cerebral palsy, (as referenced in my previous blog post on cerebral palsy and adulthood). Although there is a paucity of studies examining mental health in this population, medical researchers have speculated that the rate of depression is three to four times higher in people with disabilities such as CP than it is in the general population.
Individuals with Cerebral Palsy and other disabilities have diverse sexual identities as well. Learning from each other's experiences can lead to honest conversations and acceptance.
Family planning is an important aspect of many individual's lives, yet those with Cerebral Palsy have often been left out of the conversation.
As a parent, when it comes to different types of interventions for infants with cerebral palsy, how do you know what you have, what you don't, and what you could get?
Let me tell you about multimodal communication. We, as typical communicators, all use many different strategies. We use speech, gestures, facial expressions, technology, and no-tech solutions. As communicators, we all size up the situation based upon our communication partners, the context, the environment and then we choose to use the most effective communication strategy.
When first meeting a parent who's had a child newly diagnosed with cerebral palsy, I really want to try and help them understand their baby. It can be difficult for parents to take it in all at once and many leave that first interview quite overwhelmed, but you're going to meet some really important and helpful people.
I'm going to be talking about AAC and reading and some different things that you might not think about when you are doing those types of activities. When you're supporting reading for a nonverbal child, whether they use a high-tech system or a light-tech system, like a paperboard, you want to make sure that they have plenty of the opportunities to contribute to the experience. You want to be able to comment. You want to be able to talk about the people, the places, the things, and maybe the feelings that they have.
Every educator needs to make a decision about technology they need to put in place. They're not sure if they should put Option A in place or Option B in place. This can be particularly difficult in the world of disabilities because there might not always be a perfect answer. Teachers can look to this solution, using the least dangerous assumption to make good decisions about what technology might be best.
Everybody tells stories, and that includes people who use communication systems. To ensure success and the ability to participate we need to make it as easy as possible. So that we can tell stories whenever we want, wherever we want, to whomever we want, and in a really easy way, so we can be successful.
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.
When you're looking at setting goals for kids with complex communication needs, don't forget about setting goals that are about them interacting in the classroom. It's not just about punching buttons. It's not just about saying vocabulary words. It's about talking with people and showing who you are. Some specific goals that you can look at are in four areas. Educational goals, social goals, inclusion goals, and goals and independence.
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.
It has been scientifically proven that enriched environment can help children with CP gain new skills in their movement but also their thinking and communication skills.
After we got the diagnosis we met with Dr. Maitre the next day and she gave us a roadmap.