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.

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