My Child Without Limits: June Newsletter

My Child Without Limits_June Newsletter

Helpful Tips for Raising Healthy Families

With the rising increase in obesity in the United States, it is no wonder mothers are becoming more concerned about raising healthy children. Today’s economy tends to overindulge in fast food restaurants, participating in unhealthy eating habits, and lacking the motivation to stay physically active through daily exercise which eventually leads to future generations of kids who follow in the steps of these harmful lifestyles.

Luckily, there are helpful tips your children and family can benefit from in order to maintain a healthy and active lifestyle. Establishing healthy eating habits at home can be a major contribution in your child’s life by assisting them to prefer healthier options outside of the home as well. Another tip is to make sure your child eats a healthy breakfast every morning and maintains a consistent sleeping schedule. Breakfast in the morning is essential, a child’s brain processes in particular, because it boosts school performance by increasing attentiveness in the classroom. Similarly, getting enough sleep is vital for your child to excel in their academics and to work at their peak performance throughout classes or exams.
When it comes to staying physically active parents should be the number one role model for their children. This tip is valuable because your children will learn the importance of participating in exercise and sports if they watch their parents enjoying it and making it a part of their lifestyle. It is important to try and teach all these useful habits to your children at an early age so they can incorporate them into their daily routines.

To learn more tips about maintain healthy lifestyles for you family check out the full article 10 Tips for Raising Healthy Families

Pediatrics Report Encourages More Motor Skills Screening

According to an American Academy of Pediatrics clinical report Pediatricians should screen children for delays in motor development at 9, 18, 30 and 48 months. The report outlined motor development skills that children should have at each specified age. Diagnosing and treating those problems early on may ultimately improve kids’ outlook and help families gain additional support. To read the entire article click here.

Paving the Way to Kindergarten for Young Children with Disabilities

Entering kindergarten can be a joyful but also an anxious time, particularly for parents of children with disabilities. While some common concerns are shared with all parents, parents of children with disabilities may have unique concerns or questions about what their child’s kindergarten experience will be like and how services are delivered.
 

Amanda Fenlon, EdD, an assistant professor of special education in the Curriculum and Instruction Department at State University of New York, Oswego, has written an article for Reading Rockets to address approaches to this time in you and your child’s life. She suggests using demonstrated best practices for transitioning children with disabilities to elementary school including using a collaborative team approach to involve families, setting transition goals and focusing on the needs and strengths of individual children. Utilizing these will hopefully help make a smoother transition.  
Click here to read the full article.

Reading Rockets is a national multimedia literacy initiative offering information and resources on how young kids learn to read, why so many struggle, and how caring adults can help.

Life’s a Journey With CP and Me: National Siblings Day

katyfd-225x300Hi All,

I hope you are all enjoying your week so far, in commemoration of National Sibling Day (earlier this week) I am going to talk about having siblings and what that means to me and CP. I have an identical twin sister, Sara, an older brother, Matt, and a younger sister, Daisy. None of whom have CP—but all of whom fully understand what growing up with CP has been like, just from an outer perspective!

I truly believe that my upbringing as a child has allowed me to be who I am today. With the help of my sibling, my confidence went unshaken, and my fear of judgment drifted away. With the help of my siblings, I was happy and my dream of normalcy came true. However, as children, none of us really knew what CP was. We were too busy playing at our neighborhood park or teaching each other how to ride a bike so we could all keep up with the other kids. I didn’t learn how to ride a bike almost three years later than my twin! But at the time, we all just accepted the fact that “Katy just takes longer to do things with her legs.” It was never something I mentally let slow me down, because my siblings never treated me any differently. As far as I remember they knew that I was slower and less coordinated, but it was just a fact and nothing beyond that at the time. I am so grateful for that, in hindsight. Even up into high school, my siblings and I always did things together and my CP was never an issue that separated me, from them. Whether it was playing soccer or just hanging out and riding our bikes to the beach—I did everything just the same, but at a different pace and that was easily understood by all. I am lucky that my family and I are so close that we have been able to grow up with this special bond, and I think that my CP has made us closer, in a way. Sara and my brother, Matt always looked out for me; they were my “protectors” at school and when we were running around being kids. 

In an interview with a UCI college student, Irene Sanchez, Sara remembers: “When I think about growing up with my sister Katy, I think back to us always being together and riding our bikes to school or finding each other when we were apart because I always felt the need to be with her and to make sure she was ok.”

I always felt that, and still do. Whenever we cross a street Sara still makes sure I am beside her, just like she did when we were little on the school bus every morning! I remember one time, my brother Matt saved me from falling off the side of a moving escalator! Whenever we went on family hikes he always stayed behind me in case he had to grab my arm, as I often stumbled around on the loose gravel. I always felt that Daisy is patient with my CP and she understands how it effects me, both physically and emotionally. It is that kind of understanding and protection that I have been blessed with, and the fact that I never had to ask for it makes me all the more thankful for my amazing siblings. To this day, Sara, Matt, Daisy, and I remain the best of friends and we will always be loyal to one another as we continue to grow up and create our separate lives. Needless to say we all love each other very much and are all a part of one another in so many ways.  That is what my siblings mean to me and my CP as I have grown from a small child into the person I am today!

Katy siblings

Resouces for Parents & Family

Happy Friday to all our UCP-OC blog enthusiasts!

This post stems from a conversation with a parent, who although is a part of our Parent Email Network was not aware of a number of very valuable resources for a parent with special needs. Below we will cover 3 resources,

  1. Brave Kids (A new resource that is especially for siblings, parents and the child with disabilities.)
  2. MyChildWithoutLimits.org (A website that focuses on early intervention for children ages 0-5.)
  3. CP Research News (A weekly newsletter highlighting new CP research)

Do you have a resource that other parents should be aware of? Share it by leaving a comment on this post or on our Facebook page! If you would like to join our Parent Email Network you can email Kathleen McFarlin at kmcfarlin@ucp-oc.org.
If you would like to receive the UCP-OC newsletter you can sign up on our website or email Elizabeth Wylie at ewylie@ucp-oc.org

1. Brave Kids: www.bravekids.org

Brave Kids, a new initiative of United Cerebral Palsy (UCP), serves children with disabilities and chronic/life-threatening illnesses by providing a support community, information and resources on numerous medical conditions like genetic diseases, autism, cancer, cerebral palsy, etc.

At the heart of the new Brave Kids website and community is a belief that people with disabilities and chronic/life-threatening illnesses should be able to live a life without limits. This site contains two primary components:

  1. An authoritative directory of information of interest to parents of children, ages 6-17,  with disabilities and/or chronic/life-threatening illness; including a special “Kids Zone” section written for children and young adults, ages 6-17;
  2. A social networking community that links parents and caregivers to others raising children with disabilities and/or a chronic/life-threatening illness.

You are also welcome to sign up for a monthly Brave Kids newsletter, at www.bravekids.org

2. My Child Without Limits: www.mychildwithoutlimits.org
This second website we have featured both on our blog and in our Spring/Summer ’12 Newsletter. It has been created by UCP to be an authoritative early intervention resource for families of young children ages 0-5 with developmental delays or disabilities, and professionals looking for a single, trusted, aggregate source of information that relates to their needs and interests. All medical information is reviewed by the My Child Without Limits Medical Advisory Board, a panel composed of doctors in the fields of developmental disability and delay.

Designed to be introduced as a web site, MyChildWithoutLimits.org will offer information in three basic areas:

  • Understand – this section will explain how children develop as they grow and provides parents with easy to understand milestones that they can use to help track their child’s development. This section also provides information about disabilities such as autism, cerebral palsy, Down syndrome, muscular dystrophy, and Rett syndrome.
  • Plan – this section offers guidance on where to go for early intervention services, treatments and therapies, assistive technologies, and working with experts;
  • Act– this section explores issues surrounding disability awareness, advocacy, and lifespan planning.

There is a community section where parents can communicate with each other, ask questions of professionals and service providers, and receive support through the critical period of initial diagnosis. 

The site includes a national Resource Locator where visitors can find local service providers, community organizations and government agencies. All this is intended to inform and support parents/caregivers at a time when too much information can be overwhelming and too little can be frustrating. 

Mychildwithoutlimits.org also has a newsletter that you can sign up for at www.mychildwithoutlimits.org. Also on this site, you can sign up to receive a Welcome Pack, which contains a sippy cup, bib, stuffed animals, and information from the site’s sponsors.

3. CP Research News
A free weekly bulletin of the latest published research in cerebral palsy, compiled and distributed by Cerebral Palsy Alliance. To subscribe to this free weekly bulletin, please complete the online form at www.cpresearch.org/subscribe/researchnews.

World CP Challenge

 

We would like to invite you to participate in the World CP Challenge – an event centered around physical fitness, encouraging personal well-being and teamwork, while supporting the local community.

www.worldcpchallenge.org/ucpoc

In teams of four, participants track their daily step count by wearing a pedometer, and record their results on the interactive Challenge website. The aim for each team is to reach the summit by the end of the four weeks. There are three different levels to choose from, depending on the fitness level of the team (and how ambitious they are).

The World CP Challenge is not just about walking your way to better health – participants can run, cycle, swim or even play lawn bowls to reach their daily step target. There are more than 40 activities you can convert to steps including activities suitable for people with a disability.

Play this short video below for more details on the campaign.

 

HOW IT WORKS

Registrations are open so please visit http://www.us.worldcpchallenge.org/ucpoc to sign up or simply respond to this email.

The World CP Challenge runs from 4 September to 2 October 2012. Registrations close 17 August 2012.

The cost is $25 per adult or $10 per child. Each participant will receive 2 pedometers, a fundraising booklet and gain access to the interactive website once registered. 

Please pass on this information to anyone you think may be interested including friends in large and small organizations, schools and community groups.

 

BENEFITS

    Improve your health and wellbeing

    Increase motivation

►    Be more productive

    Encourage teamwork

    Support the local community

You will be making a huge difference to the lives of children at United Cerebral Palsy of Orange County!

If you are interested or have questions please contact: Elizabeth Wylie, ewylie@ucp-oc.org 949.333.6412

 

Life’s a Journey With CP and Me

Hi Everyone at UCP-OC!

I hope this post finds you well, and that you are enjoying the beautiful month of May. I cannot believe the time has come for me to move back home for the summer! Finals are over, and my dorm room is all packed up and the walls are bare! It’s nice to realize how much I made this place my little home away from home. I am looking forward to coming back in the fall to take on a new year! This year has taught me so many things about myself, about my education and about the world around me. I can’t wait to explore this aspect of my life even more over the next three years! It feels like only last month that I started blogging on here about my new college experiences with CP and such. We are almost half way into 2012, wow!

I haven’t posted in awhile because I am just at the tail-end of my recovery from surgery, actually. About five weeks ago, I found out that a stress fracture in my non-CP foot was actually a broken bone that I had been walking and running on for about three weeks prior. So now I have a 3 inch metal pin in my foot, super weird! It was definitely a rough experience—I was dependent on my family and friends to help me get around since I couldn’t drive, or walk without crutches. You can imagine how weird it is to have to rely on my CP side to give me the balance and coordination to keep off of my injured “good” foot. I had to get used to something so unfamiliar to me in such a short amount of time, so I think my body was in shock from the recovery process and the amount of energy my CP side had to exert as well. All in all, I learned so much from this though. I learned that it is important to listen to your body’s signs, and I learned that it is okay to ask for help. I grew to love my school even more because I truly felt constant support and love from my classmates and even professors, and that has shown me how special Soka is as a college.

But even more than all of that, I think the biggest thing I could have taken away from the past few weeks is how lucky I am to have the ability to walk. I never complain much, but sometimes it is easy to get caught up in how “inconvenient” it is to have CP. Having my walking ability be so hindered by my surgery for a little over a month has really allowed me to reflect on my circumstances in comparison to those who have CP more severely. I went to San Francisco a few weekends ago, and while those hills nearly made my legs fall off, I still felt very happy that I could get around the city alongside my family. I admire the courage it takes to let go of your pride and vanity a little when you need to depend on others to get through the day. I am happy to say that I am back on my feet, with a boot on to secure my foot from becoming more injured, but I am surprised by how well my recovery went. I am very conscious of my body’s ability now more than ever, and plan to take on these next few weeks with great ease so I can work my way up to running again in time for the half marathon early next year.

I hope all of you have a great start to the coming summer months, and maybe have a fun vacation planned with the ones you love. I know I am looking forward to this season!

Best Wishes, Katy

Mission Possible : Bike Camp 2011

  “I want to ride my bicycle

I want to ride my bike
I want to ride my bicycle
I want to ride it where I like”

 -Queen

Take a moment and imagine; an open bike path along the beach, wind in your hair, the sound of the waves breaking next to you and your family or friends riding alongside of you on your new bicycle. Riding a bike is a privilege that many of us take for granted. Most people have vivid memories of riding a bicycle throughout their childhood…and if everyone is like me, a few minor spills along the way!

 Last week, I was able to experience the true gift of being able to master the art of riding a bike at Bike Camp 2011. The camp is put on by Lose the Training Wheels instructors, Nikki & Corey,  and hosted by UCP-OC as well as the Down Syndrome Association of Orange County at the beautiful Soka University in Aliso Viejo. We want to thank Easton-Bell Sports, for generously donating bicycle helmets to each of the participants to keep them safe as the rode around on their bikes!

 The camp starts out in the gym where the children are given a bike adapted to teach children with special needs to ride a bike gradually. Each child has a volunteer stay with them through the week and work alongside of them, and by the end of the week the volunteers are running after the children so that they can keep up! Monday- Wednesday the campers ride around the gym getting used to the bikes and constant pedaling. Thursday the campers were able to go outside and try riding a bike with two wheels! The parking lot was the perfect setting for the campers to hit the asphalt and show off their skills. The parents were overwhelmed and emotional at seeing their child riding a bike on their own.

 Many of the parents of these children never thought they would see the day their child would ride a bike. Parents, like Selah’s mother, were told that their child would never walk or talk. This is a testament of what hard work, intervention, and coming alongside a child can do! If it were not for the determination of parents, volunteers and therapists, these children could be in a very different situation.

The children’s determination to ride the bike on their own was simply put; astounding. At UCP-OC we feel so privileged to be a part of these children’s lives and see these steps into Living a Life Without Limits.

Selah was a recipient of a bike from Edwards Lifesciences the week prior so she had been waiting to ride her new bike on her own! By Friday she was cruising around the parking lot on her new bike with her volunteer running behind her. Here is a video her mom made to document her success!

 

Won’t You Be My Neighbor?

Summer has officially arrived and things are changing here at UCP-OC! We have two new employees (one being me) and a desire to really get to know you! (our lovely families at UCP-OC)

So as we get to know you, its only fair you learn a little more about me! I wrote a little blurb a few months ago, but my name is Elizabeth and I was the intern here but now I am a full-time employee! I  graduated from Azusa Pacific University and I’m eager to learn about all of you. I love making pizzas from scratch (prosciutto and arugula is my personal favorite), I am a huge cupcake fan and love the fireworks at Disneyland! I am from good ol’ Huntington Beach, but big surprise I have an irrational fear of waves and therefore don’t surf. Last but not least, I LOVE taking pictures on my iPhone and sharing them. Here are just a couple pictures of the things I love (taken on my iPhone of course) :]

 

My hope is to give you information about things going on inside as well as outside UCP-OC, let you learn a little bit more about the families that come here through focusing on one child a month, as well as just creating conversations. I love the word community; a social group of any size whose members reside in a specific locality, share government, and often have a common cultural and historical heritage. I think we have the potential to create a great community through our passion for children with special needs. I really want this blog to be a place where information is given, but also where questions are answered!!

Here is how we create community!

  • Talk to us on Facebook! Give us ideas of what you want to hear from us, what you love at UCP-OC, something funny your child did that day or how we can serve you better! A good story makes my day so I would love to hear some!
  • Email me at ewylie@ucp-oc.org if you would like your child to be our child of the month! It could be a great way to give you family and friends the opportunity to learn what is going on in your child’s life.
  • Send us pictures of your child in action that we can share with everyone else!
  • Comment on a blog post! Maybe you have a personal experience or have tried something we are writing about. Let us know what you think!

Life is meant to be shared and that’s what I want to do! So nice to meet you and I can’t wait to hear from you! I think Mr. Rogers says it perfectly, “Won’t  you be my neighbor?”

Cheers,

Elizabeth