This is the first in a series highlighting “The Complete Caregiver,” whose mission is “to assist parent-caregivers of special needs and medically fragile kids by providing information, activities, resources and support to help them take care of themselves while being great caregivers to their children.”
Below is the first installment of my three-part interview with Lynn Rosser, founder of “The Complete Caregiver.”
POST ONE: GENERAL INTRO & RESOURCES AVAILABLE
1. Tell us a little more about The Complete Caregiver and who it is designed for. What was your goal in creating TCC?
Well, The Complete Caregiver has the mission of serving and assisting parents of medically fragile / special needs / differently-able kids. The main goal is to look at two major aspects, which are care for the child and care for the self, including relationships and family life, etc. It is a very big topic, and the site has a lot of content, and will continue to have content added to it as I am able. TCC is currently something that I do on my own in my spare time, as a service.
2. What inspired you to focus on caregivers?
My husband, Chris, and I are parent-caregivers of two awesome boys. My eldest son has severe autism, which was diagnosed officially at 2 1/2 years, though we knew something was wrong by 18 months. My other boy has HLHS, which is a major congenital heart defect. He had three open-heart surgeries and multiple cath-lab visits for angioplasties, etc. Because of our experience, I was so full of this heart-wrenching ache at the beginning of all of our challenges – it was like being lost in a dark woods with no knowledge of where we were or how to get help. Along the way I met so many amazing parents and their beautiful, resilient children, who were in the same dark woods we were, that I felt an inner call to DO something to share what knowledge I had gained, in the hope of helping someone else along, and give a little light to someone else’s path.
3. What obstacles do caregivers face and how does TCC address them? What resources does TCC provide?
The obstacles faced are really incredible, and they are unique to each family’s situation. It is very challenging to explain in some ways because having a child with a life-long disability and/or medical issue can affect your whole life and lifestyle. This means all of your relationships, what you are able to do in the world as far as your job, your community participation, your ability to travel, and then there are the simple every-day things, like grocery shopping, finding childcare, how much laundry and clean-up you need to do, how much personal care your child needs (i.e. toileting, bathing, getting dressed, assistance with eating, etc.), medical care they need (medicines, medical procedures, appointments, therapies, etc.) and if they need other kinds of assistance with communication, mobility, monitoring interactions with siblings, tutoring, etc.
Then there are school-age children who need an IEP (Individual Education Plan) to meet the law’s requirement that all children be provided with education, or they may need a 504 plan in place for the school to meet an issue with a medically fragile child, or one who has mobility issues so that they can have access to education. There are evaluations of various kinds, massive amounts of paperwork, and hoops to jump through to get services for your child.
There is frustration, stress and at various times there is grief.
The Caregiver’s Footsteps, which are step by step “how to’s” and ideas for caring for a special needs / medically fragile child. Because my topic is so broad, I have begun by addressing the topics that are most frequently needed, like organizing medicines and creating a 24 hour care schedule. I really am working behind the scenes to expand the topics under this heading!
The Caregiver’s Well is all about self-care for caregivers. From personal experience, it is easy to become exhausted. Self care and organization are the biggest things I need to do for myself, and my goal is to make it so others don’t have to reinvent the wheel, or can at least see what I’ve done as they decide how to handle their own journey. Topics include journaling, “Nurture Your Life” – Seven Steps to putting You back in your life, Relaxation for Caregivers, Nutrition & Exercise, Healthcare for Caregivers, Poetry, Visual Vacations (youtube collection of wonderful nature videos), Creating Resilience, and more.
There is a Resources section as well. I have some solid general resources that I’ve researched after weeding through what is available. There seems to be an infinite amount of information I could be providing, so rather than write a multitude of articles about topics that are fully covered on official government sites, in those cases I simply explain the basics and link to the rest (like education policies or MedlinePlus for understanding a diagnosis, etc.) I still have major goals regarding creating more content and resources in the future.
In the Resources section, there are free PDF forms you can download that may be helpful in organizing certain aspects of your child’s care, like a 24-Hour, seven day template to schedule care needs, a medicine chart, etc. Also, I have written The Complete Caregiver Journal Workbook, which serves as an organization tool, a personal journal, and a means to keep track of both your child’s care and your own health and well-being.
I have some good autism resources posted specifically as well – and there will be more to come on this, too!
4. Would you mind telling us how old your sons are now and how they are doing now?
My eldest son is 10, and he is in need of some intensive interventions if he is to have a shot at a more open group home as an adult. That’s the reality right now. We’d love to be able to take care of him forever ourselves, but that isn’t realistic with his degree of autism and behaviors, which include aggression and self-injury. He is struggling with so many sensory issues, communication issues (he is non-verbal), behavioral issues and learning difficulties, that only very, glacially slowly get better and sometimes regress. We do everything we can for him, and hope that a communication device, like the amazing new non-verbal communication apps that use picture choices for the iPad, might be of help to him if we can get him trained. He is very smart, but his challenges are so great that his light is hard to see at times. The good news is that we are working on getting him what he needs to help him, and have some hope that we can move forward. I have to say something here, and that is, it’s not about “fixing” him or trying to make him be “normal,” it’s about making sure he has a chance to lead a full and happy life when we are no longer able to care for him. We love him and accept him unconditionally! We work hard to give him the best of the options available to him, and that meet his needs.
My youngest, he is seven now, and doing amazingly well! We are so grateful that he is on the far-right-side of the ‘bell curve’ with his HLHS! We are very aware of how lucky we are to have that good news. We hope and pray his strong little self keeps up the good work!
Stay tuned for the rest of our series on The Complete Caregiver – “If You Are a Caregiver” and “If Someone You Love Is a Caregiver.”
All images used with permission from The Complete Caregiver
This post has also been shared at Natural Mothers Network Seasonal Celebration Sunday.