SHCN Family Partnership hosts an annual Parent & Caregiver Retreat as an occasion to make time for yourself. The Retreat also provides parents and caregivers the opportunity to network and receive education on information and resources to support caring for youth and children with special health care needs. The event is designed for Missouri parents, legal guardians, and caregivers of children and youth, ages birth to 21, who have been identified as having a complex medical condition(s) and/or who are deaf/hard of hearing. This year's Retreat, “It’s a Jungle Out There,” will be held on September 13-14 at Margaritaville Lake Resort, in Osage Beach. SHCN Family Partners and Tri-County Health Department will introduce registered attendees to the concept of a medical home and share a care notebook they have been collaborating on for youth and children.
If you have questions about the retreat, contact your SHCN Family Partner by email or phone.
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As a parent/caregiver, your time and attention are focused on the needs of others. It is important to plan time for yourself. You may feel like you are imposing or being selfish when asking someone else for support to make time for you, but it is okay to ask. Family, friends, and others you know, want to make sure that you are supported and enjoy the opportunity to help.
Putting your trust in someone to take care of a loved one can be very difficult and unsettling for both you and the person you care for. As stressful as it might be to plan time away, it is beneficial to your loved one, your family, and you. The benefits of short breaks can include time spent with other family members, time to take care of the caregiver's health needs, and the opportunity for the person receiving the care to increase their level of independence and learn how to interact with others to ensure their needs are met.
You ask yourself, how do I start the planning process to ensure the break or time away is going to be beneficial to me, while ensuring the health and safety of my loved one? One way to start the planning process is by using Charting the Life Course Exploring Respite Portfolio. Several tools can be utilized within the portfolio. It makes sense to use the tool that will best answer your question and help plan for short breaks that ensure your loved one receives the right care and support while you are away.
Below are examples of how one family used the Integrated Support Star, One Page Profile, and Life Trajectory to build in time for a break, define the right caregiver, and how they would use the break. The Integrated Support Star can be used to help explore needs and ideas to plan and problem-solve how to make time for yourself and the loved one you care for. The tools will help guide your conversation, document ideas, and organize how you are planning for a break. Click the thumbnail image below to view these tools full-size.
Or click here to view these examples of plans that have been completed:
 Charting the LifeCourse Nexus housed at the at the University of Missouri–Kansas City Institute for Human Development, in collaboration with the ARCH National Respite Network and Resource Center, developed Charting the LifeCourse Respite materials. The materials include a Respite guide book, portfolio and other tools meant to help family caregivers caring for anyone of any age or disability and those who support them create a plan to access respite services within and outside the formal services system.
Born on Valentine's Day, Arya brought unconditional love into our lives," says Sunanda, the mother of Arya and the co-founder of the Arya Foundation. The Arya Foundation is a non-profit organization dedicated to supporting children with special needs in the Greater Saint Louis Region. The Arya Foundation was established in honor of Arya, who brought joy to many despite facing multiple disabilities. Arya's infectious smile touched the hearts of all who knew her, and her journey inspired support for other kids like her.
Arya’s family (mom Sunanda, dad Dhananjay, and brother AJ) realized the firsthand experience of raising a child with special needs. Dhananjay recalls, “Our community embraced Arya and the whole family, which helped us navigate through challenging times with Arya. It is one of the most cherished times of our lives.”
In memory of Arya's legacy, The Arya Foundation operates solely through the dedication of volunteers. The Arya Foundation strives to make a positive impact in the community through various initiatives, including providing adaptive equipment to families of children with special needs. Additionally, they host a Holiday Toy Program and organize the Disability Awareness Convention, a free community event that promotes understanding and support for individuals with disabilities.
The Arya Foundation's volunteers are working hard to meet the organization's vision of "Turning challenges into opportunities." Sunanda, Dhananjay, and AJ, along with the dedicated volunteers, strive to create a community where children with special needs are embraced and supported. The foundation's goal is to provide resources, guidance, and a sense of belonging to families facing similar challenges. Together, they are weaving a tapestry of love, acceptance, and hope for a brighter future for all children, inspired by Arya's unwavering spirit and the love that binds them together.
If you would like to share your story, email FamilyPartnership@health.mo.gov.
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Choosing How to Communicate | Language and Communication
Read full article at: https://www.ndcs.org.uk/information-and-support/language-and-communication/choosing-an-approach/
Choosing a communication approach for your child can feel like a big decision. Remember, the choices you make now don’t have to be permanent. As your baby grows and reaches their first milestones, the professionals who work with your child can help you to monitor their progress and decide whether to try a different approach.
Here are some questions to ask yourself as well as things to consider when talking to professionals…
- What level of deafness does my child have?
- Is my child’s level of deafness likely to change in the future?
- Does my child have any additional needs which might make certain communication methods more suitable?
- What support will my family and I need to learn to communicate with my child in our chosen approach?
- What new skills will we have to learn as a family and how can we best commit to that?
- Will professional support for my choice be provided locally or will I need to travel?
- Will I need to pay for lessons in my chosen communication approach or is funding available to support my choice?
- How might my choice affect my child’s future, in terms of social and educational experiences and opportunities?...
Changing your approach
As your child develops and you learn more about their natural strengths and style of learning, you might want to try a different method of communication. That doesn’t mean your first choice was wrong. After all, you made your decision based on what seemed right at the time.
If you feel that your child is coping socially and educationally, but not thriving, then consider whether your first choice is still the best one. Monitor your child’s development against typical expectations, and also look at how their communication allows them to enjoy their friendships and social experiences…
Click the image on the right to learn how to welcome health care workers into your home.
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Resources for Caregivers:
Respite Tools:
Resources for Medical Home:
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