Caregiving and Anxiety, Part 2: Staying Sane in the Midst of Insanity

So, as fate would have it, today – the same day I was planning to post an informative, personal take on best practices for managing anxiety and panic – my daughter had a massive meltdown in public at our local children’s art museum. The worst one I’ve seen in a very, very long time. She dropped to the floor, knocking over a little boy on her way down. She was screaming and crying and a whole bunch of people were just standing around watching it all unfold. It was a huge, mortifying scene. My heart was racing and my hands were trembling. And, it made me realize that those of us who are parents of kids with challenging behaviors not only have to contend with chronic stress, but also acute stress that comes from incidences like the one we had today.

 

You guys, this is HARD. I am not going to sugarcoat it. My nerves are angry with me and the amount of stress they are forced to deal with on a daily basis is insane. Panic and anxiety are the result of a seriously overworked nervous system. They are not signs of weakness or an inability to manage life. They are also not permission slips to tap out of life because it’s hard. We might not be able to remove all of the major stressors in our lives, but panic and anxiety are red flags that our bodies use to tell us that we need to at least adjust the way we are internalizing the stress.

 

As the parent of a child with Smith-Magenis Syndrome, a complex developmental disorder that involves challenging behavior, I have spent the past decade of my life in a near ceaseless state of hyper-vigilance. This,  for me, has been the most difficult aspect of Sienna’s diagnosis. My daughter requires intense supervision most of the time, unless she has voluntarily relaxed somewhere with her device. Caring for her means that I must always be three steps ahead. Also important to note, as much as I wouldn’t change a thing about bringing my third child into the world, having him probably pushed my stress level over the edge.

 

Like a toddler in many ways, if Sienna is not constantly distracted, entertained or kept busy, she can find herself in a ton of trouble. She gets into everything, takes things apart, breaks them or puts them in her mouth. She lacks impulse control, not all, but most of the time. She has no concept of personal space or “stranger danger.” These traits are no fault of her own, but are a direct result of her syndrome. And, because of all of these characteristics, I must be ON at all times when I am with her. There is little, if any, down time. She does not engage in imaginative play. She does not have playdates or friends. She is not particularly interested in peer relationships. She does not even have the attention span to sit through an entire movie. Therefore, I am her primary source of entertainment, outside of school or camp.

 

There is a great deal of planning that goes into our day: how I will keep her busy, how I will successfully transition her from one activity to the next, how and when I will make sure she gets rest to avoid a meltdown, and what my exit plan will be if we are in public and things get ugly. Even on good days, this degree of hyper-vigilance is necessary. Some of these areas have improved with age. But, as she has gotten older, it has become more intense in many ways because she is so much more capable now. She is taller, so she can reach spaces she never used to be able to reach. She can turn on the microwave or the stove. She can get into the refrigerator, and she has an insatiable appetite. She can make phone calls. She can get through locks. She can leave the house. She can work herself into a frenzy, ruminating over how she wants to do something she knows we cannot do. We celebrate her milestones – always. But, her increased ability to navigate the world typically comes with new consequences.

 

I’ve been asked before, “Can’t you just teach her….” About stranger danger, about personal space, about safety. We have spent thousands of dollars and countless hours on therapy and interventions, working with her on many of these issues. I wish it were as simple as just teaching her. If it were, she would’ve learned a very long time ago.

 

My daughter is a gem. An absolute love. I adore her. She is a blessing to our family. But, I see other parents with their typical 10 year olds. Their relaxed postures. Their ability to hold entire conversations with each other without having to be on watch to make sure their child isn’t off causing mischief. I see how much calmer I am when I am alone with my typical 9-year- old. And, I understand that no amount of love in the world is able to decrease the level of stress I feel when I am with her.

 

I know that I am not alone in this. Literature related to caregivers and the stress response is scarce, but there was a study that appeared in the Journal of Autism and Developmental Disorders in 2009 which measured the levels of maternal cortisol in mothers of children with autism. Cortisol is the hormone that we release when we are stressed. In this study, maternal cortisol levels were significantly lower than normal, “yielding profiles similar to those of combat soldiers and others who experience constant psychological stress.”

 

We have to get over this idea that panic and anxiety are simply “mind over matter.” There is a clear physiological response to prolonged stress. When seeking treatment, it is critical to look at both the psychological and the physiological components. Traditional, pharmaceutical medicine treats anxiety with anti-depressants, specifically SSRIs, and benzodiazepines. While these can be very helpful and even life-changing, I have also found some non-pharmaceutical remedies that have been very effective.

 

Anne Lamott wrote that, “Radical self-care is what we’ve been longing for, desperate for, our entire lives– friendship with our own hearts.” Parenthood, especially when it involves a child with special needs, convinces us that we must put our children’s needs ahead of our own. This is not a sustainable long-term plan and it will deplete us and lead to burn-out. Radical self-care is not just an act of love for ourselves, it is also a gift that we give to our families. When I am not at the top of my game because I am neglecting my self-care, then my family suffers. But, when I prioritize my health by proactively reducing my stress, my family benefits and gets the very best I have to give. Here is what has worked for me:

 

• Eliminate or decrease use of caffeine and alcohol – One of the first things I do when my panic comes back is remove caffeine. I am especially sensitive to it when my anxiety is high and eliminating it really decreases the potential for a full-blown attack. In addition, alcohol is a known depressant, but it can also provoke symptoms of anxiety. Making a conscious effort to at least minimize use of both can really reduce the generalized anxiety that proceeds an attack.

 

• Move – There’s a saying I heard recently, “Your issues are in your tissues.” We carry our stress in our bodies. If we don’t move our bodies, the stress has no where to go and it gets stuck within us. My ideal formula for movement includes running and yoga. Because panic activates the fight or flight stress response, the flight aspect literally makes me want to run. It’s no wonder I love running so much! Running was once simply a means of weight control for me, but it’s now become my most important mood stabilizer. Running clears my brain fog and keeps me sane. The natural endorphins give my spirits a lift. Running provides me the opportunity to burn off my nervous energy in exactly the way my body wants to do it. It is also very centering and meditative for me. Yoga compliments running wonderfully, enabling all aspects of my body and psyche to slow down and be peaceful.

 

• Supplements and Aromatherapy – There are many supplements out there that are really helpful in decreasing the symptoms of anxiety. GABA Calm, in my opinion, is one of the greatest natural relaxers I have ever tried. Other really good supplements are Passionflower, Lemon Balm, Adaptogens, Serodyn, and Kava tea. I also carry a vial of NOW brand Lavender – I will rub together one or two drops in my hands and take a few deep inhales.

 

• Breathing exercises and meditation – I’ve tried many different types of breathing exercises, but my favorite is what Brene Brown calls the “Square Breath” in her book, Rising Strong. It is so simple, she teaches it to kids. I utilize it when I feel any panic symptoms coming on.

Here is what to do:

         1. Breathe in to a count of 4.

         2. Hold for a count of 4.

         3. Breathe out to a count of 4

         4. Hold for a count of 4.

         5. Repeat

Regular meditation is crucial to maintaining my peace. When I need a quick fix, I use the buddhify app (available on itunes); however, when I have more time, I really like Oprah and Deepak’s 21-day meditations (www.chopracentermeditation.com) .

• Faith – I’m not referring to religion or institutionalized faith. I am talking about my personal relationship with a Higher Power and the belief in something bigger than myself. My relationship with God is the most important relationship in my life and it is the foundation upon which everything else stands. When that is shaky, everything else is my life feels unstable. But, when it is solid, I am indestructible. My faith gets strengthened by the books I read, the time I spend in nature, by the ocean, in the mountains, on long runs, in church, and any time I shift my mind off of myself and on to helping others. Anxiety is fueled by fear. The opposite of Fear is Faith. Whatever feeds your soul will, in turn, feed your faith.

 

• Adequate sleep and a diet high in fruits and vegetables – This goes without saying, but so many people who have high anxiety suffer from a poor diet, lack of proper nutrition, and not enough rest. There is a direct correlation between how well I have fueled myself up and my anxiety level.

 

• Learn to say “No”, but don’t isolate – We need each other. We need friends, we need people to talk to and share our lives with. I have a tendency to isolate myself when things are not good, but I am learning to do the opposite. The best thing I can do for my mental health is connect with the people who love me. With that being said, I am also learning how to not overcommit myself to things that do not fill me up or add unnecessary stress to my life.

 

• Seek and Cultivate JOY – Joy is the antidote to any negative emotions I am battling. The more joyful moments I can add to my life each day, the better off my overall mental health becomes. For me, joy can come from a cup of coffee with a friend or snuggling in bed with a really good book at the end of the day. When I look for joy, it is easy to find. But, joy can be easy to miss when I am focused on my stress and anxiety. Gratitude helps me pay attention to the joyful moments. The more thankful I am, the more joyful I feel.

 

Other effective tools for decreasing anxiety and eliminating panic include: CBT (Cognitive Behavioral Therapy), Group therapy/support, and journaling (especially gratitude journaling). If you are reading this because you have been wrestling with anxiety and/or panic, I truly hope some of these suggestions are helpful to you. The most important thing we can do is stay hopeful. Don’t give up. You do not have to stay stuck with these feelings. It may take some trial and error, but if you believe that you will find a road to peace then YOU WILL. And, like the quote attached says, some days we just need to do the best we can, offer ourselves compassion and gentleness when we fall short, and then try again tomorrow.

 

I would love to hear what works for you. Please feel free to share in the comments section.