So you’ve found yourself in the middle of a raging storm. What do you do next?
Here are some practical things I learned about staying healthy, happy, and raw enough to recognize grace—if only a little!
- Put on your oxygen mask first. You will do no one any good if you crash and burn. Lock the bathroom door. Take a breath. Hide in the car with your favorite song and weep if necessary. Whatever you choose to do, take care of yourself. FIRST!
- Ask for help. I resisted for many years until I crumbled under the weight of our situation. There are many resources at a hospital, including social workers, palliative care, an ombudsman, and a chaplain.
- Sleep is the ticket to sanity when caring for a loved one. It strengthens your immune system and allows you to make rational decisions. Invest in noise-canceling headphones or use earplugs. I use an eye mask to block out the light. I’ve tried them all, and in my opinion, the best one is Bucky Eye Mask.
- Surround yourself with good listeners. When my son was young, I found many people within the special needs parenting community. The best supporters didn’t try to fix my problems but offered me a safe place to process what was happening in my life. They made me laugh in the middle of my suffering and became trusted supporters when I needed to cry.
- Nurture your marriage. Any major life crisis can create fractures in a marriage, and raising a special needs child is no exception. Connect with your partner daily—even if it’s a simple text emoji or a quick message saying, ‘I love you.’ Give each other the grace to have a bad day. Carve out time to listen to one another with your eyes, ears, and heart.
- Find your tribe. Find the 3:00 am people (it can be as few as one or two) in your life who are truth-tellers—those who will be honest with you, support you, laugh with you, love you, and stick with you even when your life is a disaster.
- Keep a log of daily updates or have someone else do it on your behalf. Short social media posts can be a simple way to communicate with a large group of people who want to find ways to help. One friend used takethemameal.com to create a customized online sign-up sheet that made it easy for people to bring us meals.
- Resist the click. Beware of making online purchases when you are sleep deprived. Remember that things are not as enticing in the daylight hours. Enough said.
- Get outside and move. Exercise releases hormones that keep your mind and body happy. Many hospitals and community centers offer restorative yoga and meditation classes for caregivers. If you don’t have enough time for a class, take a walk around the building—even in the rain.
- Quiet your mind. In the middle of a crisis, this can feel impossible. I get it. I use the apps Insight Timer, The Tapping Solution, and Headspace. My daughter uses Relax Melodies: Sleep Zen Sounds to help her fall asleep. You’ll find them online or in the app store on your smartphone.
- Try using a mantra to help center yourself. I repeat a phrase whenever my mind races with worry. I change my mantra as needed, but “All is well right now” helps me reframe my thoughts and stay in the moment.
- Keep a stash of healthy food at the hospital. When I was there for weeks and months, it was a handy way to refuel when I realized I hadn’t eaten all day.
- Avoid itchy butt. Institutional toilet paper is like sandpaper. Trust me, after sleeping in your clothes for days and sitting in a plastic chair all day, and you will want something soft down there. Bring 2-ply toilet paper when you check in to the hospital. You will thank me. 🙂
- Smile, even when you don’t feel like it. An approachable demeanor goes a long way when dealing with a medical team. Be polite, even if you have to grit your teeth. Know when to follow the team’s advice and when to advocate for your loved one with the ferocity of a Mama Bear. You’re the one who knows them best!
- Bring a friend to critical medical appointments to take notes. Ask lots of questions. Don’t be afraid to disagree with the medical team or ask for a second opinion.
- Let the tears flow. Crying has been proven to release toxins, kill bacteria, improve mood, relieve stress, and boost communication. So go ahead, reach for the Kleenex and let go of your sorrows!
- Bring meals to the hospital for the caregiver. One family friend brought me a picnic breakfast of steel-cut oats, a fresh fruit salad, and breakfast muffins and stuffed the basket with an assortment of tea bags. It was the first actual meal I had eaten in days!
- Take action. Do something that others would never think to ask of you. Do their laundry. Fill the refrigerator. Bring them healthy snacks, soft socks, new underwear, and lip balm. My neighbor shoveled dog poop off my front lawn and cleaned the chicken coop. I cried when I came home and discovered what he had done.
- Give yourself a break from social media. Don’t fall into the trap of comparing your life to others. No matter how beautiful the pictures look on social media, no one has a perfect life.
- Write a daily gratitude list. Going through my darkest days, I wrote a gratitude list and emailed it to a friend daily. It began changing my outlook on life.
- Start a journal. It helps to get your feelings out of your head and onto paper. In addition to purging angsty feelings, I make a point to write funny things that my kids say. Looking back later, it reminds me why I love them so much.
- Visualize a mini vacation. With your eyes closed, picture a place (real or imagined) where you feel safe and relaxed. Using all your senses, feel yourself in comfortable clothes, hear pleasant sounds, see beautiful colors, and taste something delicious. Visit this spot whenever you need to relax and de-stress.
- Give yourself a pep talk by reading from a daily devotional or gratitude book. I love the devotional, Jesus Calling, by Sarah Young, and a little gratitude journal called Daily Gratitude: 365 Days of Reflection, by National Geographic.
- Laugh. A hearty laugh is the best medicine. It reduces stress, increases resilience, boosts immunity, combats depression, and relieves pain. When my son was in the hospital, I found that witty banter back and forth with a friend over text would break my cycle of stress and help me cope.
A diagnosis of Autism can strike terror in the hearts of parents, leaving them feeling confused and helpless. Fortunately, there are countless resources on the Internet for information about Autism; chances are, your community and local school district will be able to guide you to help within your community. If you are just learning about ASD, I like the groups, Autism Speaks (autismspeaks.org), Autism Now (autismnow.org), and the National Autism Association (nationalautismassociation.org.)
- ParentMap Magazine (www.parentmap.com) has published numerous articles about parenting children with special needs. Some of my favorites are written by Nancy Schatz Alton. Here’s one that will guide you to the right resources. Nancy also reviews books about special needs parenting here.
- Check out the comedy Asperger’s Are Us—a film made up of four lifelong friends on the autism spectrum. The New York Times recently said this show was ‘on the cusp of comedic success.’ You can find this hilarious four-person comedy troupe on Netflix.
- Atypical is a Netflix dramatic series that addresses complex family dynamics. Sam, a teen on the autism spectrum, decides to get a girlfriend and his bid for more independence puts his whole family on a path of self-discovery.
- Books by Temple Grandin are a great place to start if you want to get inside the mind of an autistic person. She offers a variety of resources on her website here.
- Another great book is Look Me in the Eye: My Life with Asperger's, by John Elder Robison. A born storyteller, Robison has written a moving, darkly funny memoir about a life that has taken him from developing exploding guitars for KISS to building a family of his own. It’s a strange, sly, indelible account—sometimes alien yet always deeply human.
If you are in Washington State, these are excellent resources:
- University of Washington Autism Center: depts.washington.edu/uwautism/
- The Center for Child and Family Well-Being at the University of Washington: https://depts.washington.edu/ccfwb/
- Seattle Children’s Autism Center: seattlechildrens.org/clinics-programs/autism-center/
- Washington Autism Alliance & Advocacy: washingtonautismadvocacy.org
I am a big fan of MBSR (Mindfulness-Based Stress Reduction), developed by Jon Kabat-Zinn, at the University of Massachusetts Medical Center. MBSR is a program designed to assist people with chronic pain and various medical conditions that can be difficult to treat in a hospital setting. It uses a combination of meditation, body awareness, and yoga to help people become more mindful of living in the present moment. You can find more information about MBSR here: http://www.umassmed.edu/cfm/, or in the Seattle area: mindfulnessnorthwest.com
EFT Tapping is a powerful way to reduce anxiety within a few minutes. The Tapping Solution book by Nick Ortner is a great resource, but even better, check out the mobile app "The Tapping Solution."
Get a massage. Human touch is more potent than any remedy medicine can throw your way. There are more types of massage than I can list, but if you don't know where to start, Massage Envy (www.massageenvy.com) is a national chain that offers a wide variety of massage styles and practitioners at an affordable price. Try one and see what fits you.
Taking care of your mind and body is essential for both patient and caregiver. Surrounding yourself with a supportive network of people will help you strike a healthy balance in your life. Identify your sources of stress and seek out ways to cope. Get moving, engage socially, avoid unnecessary stress, accept the things you can’t change, and make time for fun—even amid life’s raging storms. Try volunteering in your community. People who spend time helping others get as many benefits as those they help. Get help when you need it. Consider finding a skilled listener to help support you through difficult times. An excellent resource for therapists nationwide is psychologytoday.com.
One of my new favorite ways to connect with my body and mind is through Nick Ortner’s The Tapping Solution app on my phone. Inspired by the groundbreaking work of Louise Hay, this simple EFT tapping meditation can make a profound difference in your stress levels within minutes.
Don’t forget to feed your body good food! Eating fresh whole foods helps to fuel our bodies and keep our minds alert. I love grazing through cookbooks that educate me about the food I am putting in my body. A couple of my favorites are Eat, Taste, Heal: An Ayurvedic Guidebook and Cookbook for Modern Living, and Giada’s Feel Good Food, by Giada De Laurentiis.
Make time to look for a safe and healthy faith community. Nothing makes you question the existence of God like a personal tragedy. Don’t be afraid to ask challenging questions. If you bring up death, doubt, fear, or a strong desire to run away from home and become a monk, and they look at you like you have three heads—keep looking. A healthy faith community is comfortable with you wherever you are in your faith journey, without expecting you to be someone you are not.
Stephen Ministries was helpful for me. They provide confidential, one-to-one care to people experiencing a difficult time in life, such as grief, divorce, job loss, chronic or terminal illness, relocation, or transition. For information about Stephen Ministry, go to their website: stephenministries.org. To find a care ministry near you, call 314-428-2600.
Books by Pema Chodron, the best-selling author and spiritual teacher (sometimes known as ‘everyone’s favorite Buddhist nun’), shares practices for living with wisdom and integrity even in confusing and uncertain situations. Her way of reframing events in our lives reminds us to breathe deeply and look for the good. You can find all her books on Amazon.
Having backyard chickens is all the rage. Not only are they easy to raise, but they also make great pets and provide you with fresh, organic eggs every day! For anything you ever wanted to know about raising and caring for chickens, check out Gail Damerow’s book, Storey’s Guide to Raising Chickens.
Want to brush up on chicken speak? Check out Melissa Caughey's, How to Speak Chicken: Why Your Chickens Do What They Do & Say What They Say
Want a fun weekend project? Try building a chicken tractor. There are tons of free plans and tutorials on the Internet that will keep you and your family entertained, and the chickens contained!
Research has shown that connecting with animals eases stress and pain and improves overall functioning in adults and children. If you are considering a service animal for your child or loved one, these sites can help lead you in the right direction: Canine Companions, servicedogsforamerica.org, 4pawsforability.org.
Check out the book Dog Medicine: How My Dog Saved Me From Myself, by Julie Barton. Dog Medicine captures in beautiful, elegiac language the anguish of depression, the slow path to recovery, and the surprising way animals can heal even the most broken hearts and minds. A beautiful read!