November is National Family Caregivers Month!
This month is National Family Caregivers Month. Led by Caregiver Action Network (CAN), National Family Caregivers Month serves as an opportunity to draw attention to caregiving issues and the need for increased support for family caregivers.
As disability advocates, DSHN understands that caregiving is an exhausting (but rewarding!!) job. Many of our newsletter recipients are caregivers or work closely with caregivers and understand how real and pressing caregiver burnout is. Part of being a caregiver is anticipating and responding to someone else’s needs. This often results in neglecting your own.
This month, in the spirit of National Family Caregivers Month, DSHN encourages caregivers to take some time to practice self-care. As we outlined in September’s newsletter, self-care can look different for everyone. In case you are struggling to determine what works for you, here are some tips for taking care of yourself this month.
1. Don’t be afraid to find support. You cannot be “on the job” 100% of the time. You need time to rest and relax. If you do not already have a support system in place - someone who can give you a day of rest every once in a while - consider looking for local resources that provide respite care. Additionally, websites like Care.com allow you to find sitters who are experienced in dealing with children with disabilities.
Remember that while you may think “no one knows him/her/them like I do,” you probably didn’t always know the most effective way to care for them. It is a learning process and if someone else is willing and able to learn (and you are comfortable with them and confident in their abilities), it is okay to give them time to get to know your child and learn how to care for them.
2. Take time for yourself. This really goes along with tip #1, but even if you don’t have someone to help share in your caregiving duties, you can still find time to do the things you like to do. Perhaps your child has physical therapy or tutoring. Or maybe they are taking a nap or you’ve already put them to bed for the night. During this time, it might be tempting to start prepping for tomorrow: washing dishes, packing lunches, cleaning, doing laundry. Of course these are all important chores, but they don’t need to take up every moment of your personal time. Maybe you dedicate one night a week to watching your favorite show or reading a new book or even just scrolling through Facebook. Or maybe, you take 30 minutes each night to do something you love. Whatever your method, be sure to give yourself time to just be you.
3. Practice stress-reduction. Life is stressful, but it becomes a lot more stressful when you are taking responsibility for yourself and someone else. Stress can make us irritable, tired, and even physically ill. To better take care of our loved ones, it is important to take care of ourselves by learning to manage our stress. There are a few different ways to practice stress reduction. The first step is recognizing the signs of excessive stress in yourself. Are you sleeping less? Eating less? Eating more? Have you been quick to snap at your child or partner? It is important to take time for yourself before you become entirely overwhelmed. Take a moment to yourself. Go on a walk, watch an episode of your favorite show, or read a chapter of a book.
While knowing your warning signs can be helpful in preventing overwhelming feelings of stress, practices like meditation and yoga can help to moderate overall stress levels. If yoga and meditation are not for you, there are other stress-reduction practices you can incorporate into your weekly routine. Start a journal where you can be brutally honest about how you are feeling. When you are done writing for the day, rip out the pages and throw them away.
Caregiving is not an easy job, but it does not have to take over your physical and mental health. Remember to take care of yourself, too.
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Spotlight on The Arc of Harrisonburg & Rockingham and The Arc of Augusta
This Arc is a national organization with state, regional, and local chapters across the United States. They work to support and advocate alongside individuals with developmental disabilities (DD) for inclusion and participation in their communities. The Arc firmly believes in self-advocacy and works to actively support people with intellectual and developmental disabilities in actively advocating for themselves.
Since this month is National Family Caregivers Month, DSHN would like to highlight The Arc of Augusta and The Arc of Harrisonburg & Rockingham and the work they do to help support children with developmental disabilities and their caregivers.
The Arc of Augusta is located in Waynesboro, Virginia. Started in 1960, The Arc of Augusta is dedicated to supporting and advocating for all children and adults with intellectual and/or developmental disabilities in the Staunton, Waynesboro, and Augusta County areas.
The Arc of Augusta recently received a grant from the J & E Berkley foundation for partial funding to design and implement a DD Youth Socialization Program to engage the DD and autistic youth population in the area and help form connections and friendships outside of school and family.
Additionally, the Arc of Augusta is working to establish funding for a Sibling Advocacy Program that helps to support the siblings of DD individuals in their future roles as guardians and/or caregivers for their disabled siblings.
The Arc of Harrisonburg & Rockingham is located in Harrisonburg, Virginia. Started in 1962, The Arc of Harrisonburg & Rockingham actively works to cultivate an inclusive community throughout Harrisonburg City and Rockingham County. They offer a number of community- and home-based services for individuals with DD.
The Arc of Harrisonburg & Rockingham also provides Lifespan Guides which provide information for caregivers of children with developmental disabilities.
Together, the Arc of Harrisonburg & Rockingham and the Arc of Augusta are working with DSHN to create a Resource Hub to host sexual health resources for children with developmental disabilities and parents/caregivers of children with developmental disabilities.
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Resources throughout the newsletter are labeled as follows:
[t]=text [v]=video [a]=audio [l]=list [w]=website
[w] Taking Care of YOU
[w] 14 Life-Changing Tips for Managing Caregiver Burnout
[t] Stress: Family Caregivers of Children with Disabilities
[v] How to Manage Compassion Fatigue in Caregiving - TEDx Talk by Patricia Smith
[w] 16 Ideas for Recharging Your Caregiving Energy in 15 Minutes
[v] PEATC’s Back to School Planning Guide
[t] Training Manual for Caregivers of Children with Disabilities - This training guide was developed by UNICEF, the Ministry of Gender, Children and Social Protection in Ghana, and USAID. It can be used as a resource for teaching others to care for your child or other children with disabilities.
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Tip: Use YouTube's media player controls to make videos more accessible. Find out how at the links below:
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Youth Advisory Board Connection
Checklist for Caregivers: How to support people with disabilities in a relationship
This checklist has been developed by a Youth Advisor who uses a wheelchair for mobility and requires assistance with various activities of daily living. This is the checklist that she wishes she had to give to her caregivers when she was in a relationship. It would not be unusual for your client to be in a relationship, which makes it important to understand best practices and your client’s wishes before providing care.
As with any person, disabled or nondisabled, there are certain questions that people may feel as off-limits until they get to know you. There are also certain things that are outside of your need-to-know or responsibilities as a caregiver. Clients may request privacy, which needs to be respected. Below the general caregiver checklist, we also include a safety and privacy checklist for caregivers of those who used adult briefs for toileting, if that information is applicable to your own situation.
These are different ways that you can preserve your client's safety and dignity. Not following these steps could potentially cause harm to your client.
Practices for Caregivers in Supporting Privacy and Relationships in Clients:
- Remember that people with disabilities have just as much interest in romantic and sexual relationships as anyone else.
- Respect that your client's values are their own, and they may not share your own values. Ask for permission before sharing advice.
- Build trust before asking questions.
- Give your client space for privacy and intimacy when they are in a relationship.
- Remember not to make assumptions about
- Before entering your client's room, please knock on the door.
- Remember that people in interabled relationships are equal partners, and neither one is a burden to the other.
- Remember that ultimately, the client is the one who decides who assists them in the activities of daily living. Sometimes this could be a partner.
- Make sure that your caregiving responsibilities are completed whether or not a partner is present.
- your client's life. You only see what is going on in your client's relationship within your shift.
Practices for Caregiving of People who Wear Adult Briefs for Toileting:
- Commit to asking your client for consent before assisting.
- Maintain your client's privacy and find privacy before providing care (it helps if this is in a designated location).
- Always wash hands before and after providing assistance.
- Use gloves
- Always have needed equipment on hand like:
- Menstrual hygiene products
- Diapers/Adult Briefs
- Gloves
- Wipes
- Hand sanitizer
- Know the policies of the location where you are providing assistance.
- Follow your client's plan of care (if applicable)
 
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Follow You, Follow Me Short Film Premiere!
Tune in November 1 · 12:00pm EST for the premiere of the short film Follow You, Follow Me.
The Disability-inclusive Sexual Health Network and Heath Education Design Group are hosting a premiere of the short film Follow You, Follow Me!
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Follow You, Follow Me is a short film designed with and starring people with disabilities and produced through collaboration between the Disability-inclusive Sexual Health Network and Health Education Design Group at James Madison University. The film follows the storyline of the everyday adventures of an interabled queer couple to explore deep themes surrounding relationships, disability, and ableism. The starring couple, Taylor and Kim, navigate the joy, intimacy, and challenges of relationships while confronting the impacts of ableism and feelings that disabled people are not worthy romantic partners. Through practices of mutual support, learning, and care, Taylor and Kim leave the audience with an appreciation for the unique strengths and baggage that all people carry within romance, and the beauty of diversity in relationships.
Don't miss it! Tune in at www.sexedva.org/fyfm November 1 at 12:00pm EST!
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