As many in the LGS community may know, Andee and Kannon Cooper are two close friends of mine who introduced me to LGS. Attending conferences with Andee (mother of Kannon who has LGS) and getting to know other parents and siblings of children with LGS, I have been blown away by you incredible people!
As we have entered this unprecedented time of COVID-19 in our world, I personally, have been pulling from the LGS community’s expertise. I am a Licensed Professional Counselor with a PhD in Human Sciences and yet it’s been the LGS families, who have truly been some of my greatest teachers. As I began to write this blog, I realized, you are the real experts. Allow me to explain the lessons you are teaching the rest of us.
Lesson one: EMBRACE THE UNKNOWN. Is there a more mysterious diagnosis than LGS? If so, I’m not familiar with it. As society now grapples with ever-changing messages from medical professionals regarding Covid-19, I cannot help but think of the ever-changing messages the LGS community receives regularly regarding effective treatments and causes of LGS. The anxiety currently permeating society is driven largely by the various, often contradictory, messages regarding the virus and the ability to treat it. A similar flavor of anxiety each family of a child with LGS has likely encountered when their child began experiencing seizures. What is this? Did I cause it? How can I protect my family from it?
We embrace these questions by finding meaning in them. Often we move from the known to the unknown and back again, and finding meaning from experiences can be incredibly healing. The LGS community does this very well when you share your loved ones' lives with the public. By telling your stories, you are inspiring others. Whether it is a post about the debilitating seizures, the confusion of the diagnosis, or a heartwarming story of your athletes running in the mountains, share your family’s stories when you’re ready and allow them to enhance the world.
Lesson two: THAT QUARANTINED LIFE. I have watched your families leave restaurants, grocery stores, friends’ and family’s houses, school functions, even public parks early due to behaviors and seizure activity. Church from the living room is nothing new to families of individuals with disabilities. While other children are playing organized sports, or even participating in Special Olympics, many families with LGS are alone with their child in their backyard or bedroom. When the weather allows, Andee takes Kannon to the river where he can throw rocks for hours while his classmates’ are learning team sports at the local soccer field.
The isolation that comes with caring for someone with a disability can be devastating and yet, it is the norm for so many. So often the only people with whom your loved one with LGS interacts besides yourself, is someone paid to be there. I keep wondering what it’s like for you to see people posting their frustrations with staying home right now while so many of you have been staying home for reasons beyond your control, frequently. When the walls close in, remember- You are the ones who know how to do this!
Lesson Three: WHEN YOU’RE FEELING HELPLESS, HELP SOMEONE. As I’ve observed others terrified of feeling lonely and/or bored, I’ve also watched LGS families lead the way with zoom meetings, texts, phone calls, and social media posts. You all know the importance of connection, community and helping each other in any way possible. The people I’ve met through the LGS foundation are some of the most generous people I’ve ever known. (anyone remember that conference when Andee lost her wallet? A team of you pitched in and got her from Orlando to Oklahoma!
While many of you have found a family through the LGS foundation, let me encourage you to not stop there. Now, more than ever, you may need help and now, more than ever, you may be afraid to ask for it. However, one of the common frustrations among many right now is the feeling of helplessness. Consider it a generous act for your neighbors and allow others to step in and help you where you need it most. Let someone bring your groceries,or take your dog on a walk for you, or send you puzzles or books, etc. You will be helping them more than you know.
Lesson Four: INSANE CHOICES. Once, during a lengthy stay at the hospital due to irregular seizure activity, Kannon needed to use the restroom. This was a big moment as his system was beginning to function regularly but he was still unstable on his feet. He was on about hour 85 of a 48 hour EEG. Hopefully you can picture this. The EEG techs had attached the glue and nodes on a week day and during the weekend, when Kannon decided he’d had enough, the EEG tech team was off duty and we were told to wait. His hair was sticking up everywhere and he’d begun ripping a few of the glued on nodes out. Andee being the resourceful human that comes with parenting LGS, had an idea. While Kannon was preoccupied sitting on the toilet, we could cut the nodes out of his hair. With Kannon sitting like a grown man after his morning coffee, we stood above him and began cutting his hair.
This didn’t last long and he abruptly stood up. Apparently he was finished but we now had about 30% of the nodes cut and the rest hanging on for dear life. In the rush of his standing up, I jumped up on top of the toilet to reach his hair (Kannon is taller than both of us) and I dropped the scissors INTO the commode he’d just used! In this moment we were faced with an insane choice. Those scissors were the key to stopping him from ripping his entire head of hair off his head, one follicle at a time. So, we did it. We got the scissors and eventually we got all of the nodes off (fingernail polish remover helped with the glue). We sanitized the scissors and I returned them to the nurse with no questions asked. It was a disgusting and impossible choice but one we can laugh about now. This is just one example of the types of choices the families of LGS face regularly. On any given day, you are making choices the rest of the world has not and may not ever consider. However, as parents are now homeschooling globally, we can assume decision fatigue will set in. Speak up and share your tips on how you continually find ways to make decisions even when your choices seem insane.
Ok, now that you remember you are the experts in times of crisis, I want to encourage you with ten tangible tips on how to care for yourselves while caring for others.
10 TIPS OF SELF-CARE FOR THE CAREGIVER:
1. Check in with yourself consistently. You can put reminders in your phone for this or keep yourself on a schedule in which you stop and check in at least three times a day. Ask yourself how you are feeling? Did you drink any water today? Have you relaxed your shoulders? Have you rested your body? Moved your body? Your body will tell you what it needs when you ask.
2. Muscle relaxation. Our stress response mobilizes us to move toward safety. Our bodies don’t know if we are actually being presented with a physical threat (i.e. a bear running toward us) or an apparent threat such as the “what if I get the virus and am unable to care for my child?” This response increases our energy and we need to move it or else it can become stagnant and frustrating to our bodily systems and eventually cause harm. One way to move through this is to squeeze your hands into fists as tight as you can then release. You can do this with other muscles in your body squeezing your calves, standing on your tip toes, and even contracting all muscles at once and then release. The release signals to your body that you’re ok, it tells it that you are not being chased by a bear. Once we are relaxed, we are able to be more present.
3. Deep breathing. Right now, as you read this, inhale filling up your lungs as much as you can - then exhale releasing all you let in. Now do this 10 more times before reading on. Try to do this once a day.
4.Boundaries. Author Brene Brown suggests that setting boundaries is an act of compassion because by saying no, we are preventing future resentment. Read that again. We are playing the long game here and the less we resent those who continue to ask for more from us, the more we actually have to give.
Physical: Find one spot that is all your own. This may be difficult but even if it’s outdoors or in a closet, find a space that is yours. Allow yourself to go there at least once a day to catch your breath. It’s ok if you cry in there.
Social: Edit our social media. Mute or unfollow those accounts that trigger anxiety and/or the comparison bug. Use social media as a positive way to connect with others but limit your time if it is causing discomfort.
News: find your preferred trusted news outlet and check in occasionally but limit your time watching or listening to it. It is constantly changing and the move from the known to the unknown can be exhausting.
5. Treat yourself. Cue up your favorite movie, your favorite book, and your favorite music. Touch down with the things that bring you pleasure and do so, often. Give yourself permission to enjoy them.
6. Semi-structured Routine. Each evening, write out a schedule for the next day and leave room for free time. Give your family a schedule to follow for meals, school work, and household activities while leaving open time for unexpected moments of rest, play, and creativity.
7. Sleep. Make it a priority.
8. Eating. Listen to your body. With the new normal of being home, you may find yourself more or less hungry than when you were on a busier schedule. Let yourself. Choose nutritiously and intuitively and please don’t beat yourself up if you over indulge occasionally.
9. Non-negotiables. Find 1-3 things to commit to that are not negotiable. This could be drinking a glass of water first thing in the morning, taking time to journal, meditation, etc. Commit to 1-3 things that you will do every single day and do them. This will help build your trust in yourself.
10. Let go of perfectionism. Do your best and trust that it is enough.
I don’t need to tell you that we are living in uncertain times but I can remind you that you, families with LGS, have been navigating uncertainty for so long. If nothing else, I hope you feel a little more confident after reading this and I hope you feel my immeasurable gratitude for all you’re continuing to teach me. We are in this together.
Amanda S. Cothern