When you’re the parent of a medically fragile child, it’s important for you to have as many resources as possible. This journey can feel lonely and isolating at times, but you are certainly not alone. Believe it or not, there are over six million special needs children in American public schools, making up 13 percent of the school population. Assuming the average family has two children, that means roughly 13 million parents have special needs children.
To help and support this demographic, there are a number of support resources available. Some groups are intended for emotional support while others are for pragmatic support. You can find groups in your local area as well as nationally and internationally. Thanks to the internet, it’s possible to connect with people from all over the world.
Whether or not you join a support group is up to you. What’s important is that you are aware of the support services available in your local area and how to access them. Below are some of the best support tools to have on hand.
Mommies of Miracles is the world’s largest virtual support group for mothers of children with medical complexities. Their mission is to eliminate the isolation that these mothers face on a daily basis. The community offers a wide range of support tools, including grief support, family matching, an extended network of resources and hope.
The Different Dream website launched in 2009 as a gathering space for the parents of children with special needs. Over the years, the website has expanded to include those caring for loved ones of all ages. The website has a Resources tab that features helpful toys and therapy items for kids with special needs as well as a regularly updated blog.
5 Minutes for Mom offers all types of tips and advice for moms and they don’t neglect moms of medically complex children. If you visit the Special Needs Archive (linked above), you can read articles on raising children with special needs. The articles tackle a number of medical conditions as well as tips and tricks for dealing with them on an everyday basis.
Complex Child is an excellent source of information for the parents of medically complex children. You can browse their website for updated, relevant articles or subscribe to their newsletter. Complex Child is available online and always free. They don’t even run advertisements so that readers can enjoy ad-free content.
If your child has a trach, you’ll find this website to be informative and uplifting. You will have to sign up to be a member so that you can access all of the portals, but this process is fast and free. With your membership, you’ll have access to the patient and family forum, and you’ll be able to post and share your own stories.
Parent to Parent USA empowers and supports parents nationwide. Visit the website to be matched to a Support Parent who can help you find relevant information and resources. This peer support system fosters mutual growth and resilience in families of special needs children, as well as offers them hope and inspiration.
Faith’s Lodge supports parents and families coping with a child that has a medically complex condition, as well as those grieving the loss of their child. Families reserve a weekend at the lodge and are able to connect with other families dealing with similar situations. During your stay, activities (yoga, mindfulness) and most meals are provided.
Faith’s Lodge also has a page of resources that you can look over.
For more than 30 years, the Pacer Center has helped parents enhance the quality of life for their children with special needs. There are a number of programs that you can participate in, including Fun Times and Transitioning to Life After High School. Be sure to check out the Resources & Workshops tab for livestream events and workshops.
Pediatric Respite Care
Pediatric home care makes it possible to keep your child at home, even with a complex or life-threatening condition. Your child will receive skilled nursing care from a qualified nurse, allowing them to be safe and happy in the home. Pediatric home health care also plays a critical role in helping families with medically complex children function as a unit.
When you choose a pediatric home health agency like Continuum Pediatric Nursing, your family will be matched to a skilled and compassionate nurse. Not only does your child receive specialized medical care, but also parents get respite time. Our agency is dedicated to helping families build healthy, strong lives.
If you’re not currently working with a pediatric home healthcare agency, be sure to talk to your doctor or contact Continuum Pediatric Nursing. There are many ways to pay for these services as well.
Books and E-books
If you enjoy reading, there are plenty of books on medically complex children. Here are a few of our favorite titles:
- Parenting Your Complex Child – by Peggy Lou Morgan
- Strength to Care: Reflections for Parents of Children with Complex Medical and Special Needs – by Kevin M. Troupe
- Half a Brain – by Jenni Basch
- Embracing this Special Life: Learning to Flourish as a Mother of a Child with Special Needs – by Jenn Soehnlin
- What Will Happen to My Special Needs Child When I Am Gone – by Susan Jules
Arrange for Pediatric Nursing Care Today
We hope that these resources will provide you with some direction as to where to find support, inspiration and hope. It may feel most comfortable to hide away, but we can assure you that utilizing these resources will help you accept your child’s condition and find ways to function as a family. The key is to go at your own pace and choose the support services that make sense for you. To learn more about the pediatric home health care services offered through Continuum Pediatric Nursing, please contact us today at (800) 828-5659.