Parents, grandparents, siblings, family members and friends are often thrust into the role of a caregiver when a child has been diagnosed with autism. In doing so, they often lose their identity as a parent, grandparent, sibling, etc. which can be difficult and most often exhausting. By understanding how to provide support to someone taking on the role of caregiver, we can also help them take some of their identity back whether it be as a parent, grandparent, sibling or friend. In this month’s blog, we talked to a parent who has also taken on the role of caregiver to discuss the difficulties of this role and strategies to help navigate being both parent and caregiver
What is the most important thing you’ve learned as a caregiver?
There are so many things I’ve learned over the years that are equally important, but I think the one I try to practice most often is honesty and open dialogue. They kind of go hand in hand in that being honest with myself about my child, his needs, his strengths, our family situation and then communicating all of those effectively will create a better environment and best possible future for us all. Pretending things are better than they are or being in denial about severity of delays or behaviors will only delay progress and getting the support needed. I am an open book and I guess I kind of have been most of my life, where I don’t shy away from talking about things, but putting my story out there and talking honestly about everything starts conversations and I found resources and people, even old friends that I’d lost touch with, who are on similar journeys. Don’t be afraid to talk and open up where you feel safe to do so. Doctors can’t help when they don’t have all the information and neither can therapists or friends. There are so many people you will find are empathetic and may hold information you do not.
What are coping skills strategies for caregivers?
Finding a way to remove yourself from the caregiving role if even for 15-30 min. Do something mindless to help you reset. This could be going to the grocery store, sitting in the bathroom or closet at home, going for a walk, read a chapter or two in a book, play a game on your phone. If you have friends who can meet for coffee or a drink or take a quick call from you to just listen, that does wonders. I have friends that have special needs kiddos and ones who do not, how I’m feeling will determine who I connect with at certain times. Try to find people that support you either through school, neighborhood, therapy centers or social media.
What are some examples of things people and organizations can do to support caregivers?
Promoting meet ups and connections of caregivers is a great way to support the caregiver community. Welcome parents and their kiddos to functions and get togethers. Creating a directory of parents who can mentor or be an ear when others are going through a tough time. When you are consumed with caregiving it can be very lonely and just knowing you are not the only person struggling can lift spirits. Therapists and teachers can listen to caregivers and be sure to explain things in detail so everyone is on the same page. Consistency is key.
What skill can often help a caregiver make the best out of a tough situation?
I find having patience and giving grace can help me muddle through the real tough times. Have patience with your child, therapists and your partner too. Your child may feed off of you and if you are fired up they will be too so try to bring it down a notch. Understand they are struggling internally and need you and the environment to help guide them and teach them skills they just don’t inherently have like most of us. Training in behavior intervention plans can also keep things consistent between services and home so your child understands the expectations everywhere and set them up for success.
In summary, finding ways to support a caregiver can often make a huge impact in their life. They are not only navigating the daily parenting tasks, they are also tackling IEP meetings, daily therapy sessions, multiple phone calls from the teacher, de-escalating behaviors and so on and so on. And, as caregivers it is important to also reach out for help and be honest because as this parent said, “ talking honestly about everything starts conversations and I found resources and people, even old friends that I’d lost touch with, who are on similar journeys.” At KEY, we offer resources for parents and caregivers to help navigate each individual journey to make sure everyone is successful, from parent education to sensory friendly outings to personalized ABA services that fit individual needs.
