Survival Guide

Check back frequently for a comprehensive, up-to-date resource guide including a list of books, websites, blogs, movies, recipes and smartphone apps that have to do with autism, self care, health and wellness, faith, chickens, human-animal bond and more!

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!):

Become part of a ‘tribe.’ Find the 3:00am 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.
Take care of yourself 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. Whatever you choose to do, take care of yourself. FIRST!
Surround yourself with people who will listen to you rant and will trust you will take action when you need to. When my son was young, I found many of these people were within the special needs parenting community. The best supporters made me laugh in the middle of my tragedy. They were often older, wiser, and more experienced than me.
Nurture your marriage. Raising a special needs child, or any major life crisis can fracture a marriage. Regroup every day, even if it’s a simple text that says, ‘I love you.’ Throw a frisbee, go for a walk, watch a favorite comedy, or do whatever you do to remember why you started this journey in the first place. Take turns to give each other the grace to have a bad day. Carve out time to listen to one another—really listen—with your eyes and ears and heart.
Don’t be afraid to ask for help. I resisted for many years until I was ready to crumble. There are many resources at a hospital including social workers, palliative care, ombudsman, and a chaplain.
Find someone to be your representative or ‘Life Coordinator,’ so you can concentrate on the crisis. Let them interface with questions and offers from well meaning people.
Start a blog, or have someone do it on your behalf. It can be a simple way to communicate with a large group of people who want to know what is going on and find out how they can help. One friend used takethemameal.com to create a customized online sign up sheet that made it easy for people to bring us meals.
Sleep is the ticket to sanity when you are in the hospital. It strengthens your immune system and allows you to make sane decisions. Invest in noise cancelling headphones or use earplugs. I use a facemask to block out the light. I’ve tried them all, and in my opinion, the best one is Bucky Eye Mask. Find it on Amazon.
Beware of making on-line purchases when you are sleep deprived. I like to virtual shop and add multiple items to my cart, dream about it, then exit the site before I am tempted to dig out my credit card.
Get outside and move! Exercise releases all those good hormones that keep your mind and body happy. Many hospitals and community centers offer restorative yoga classes. If you don’t have enough time for a class, put on a jacket and take a walk, even in the rain. You may never FEEL like doing it. Do it anyway.
I learned how to meditate, and I use Insight Timer, a mindfulness app. My daughter uses Relax Melodies: Sleep Zen Sounds to help fall asleep. You’ll find both online.
I started using a mantra, repeating a phrase whenever my mind would race with worry. I change up my mantra as need be, but I find “All is well right now” helps me reframe my thoughts and stay in the moment. Find one that suits you.
Keep a stash of healthy food at the hospital with you. When I was there for weeks, and then months, it became my solace at 1:00am when I finally realized I hadn’t eaten all day.
Institutional toilet paper is like sandpaper. In order to avoid itchy butt, bring your own 2-ply toilet paper when you check in to the hospital.
A smile and an approachable demeanor go a long way when dealing with a medical team. Be polite, even if you have to grit your teeth. Know when to follow the advice of the team, and when to advocate for your loved one. You’re the one who knows them best!
Bring a friend to important medical appointments to take notes. Ask lots of questions. Don’t be afraid to disagree or ask for a second opinion.
Give yourself permission to feel. Cry. Cry a lot. Alone. With other people. In the car. It just might be what the doctor ordered! 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!
If a friend or loved one is in crisis, do NOT ask them what you can do, and do NOT tell them you feel helpless. They may have no idea what to ask for, and they are the ones who feel helpless. Take action. Do something that others would never think to ask of you. Clean toilets. Do laundry. Fill the refrigerator. Bring by healthy snacks, soft socks, new underwear, and lip balm. My neighbor shoveled three weeks of dog poop off my front lawn and cleaned the chicken coop. The night I came home and discovered what he had done, I cried.
Bring meals to the hospital for the caregiver. One family friend brought me a picnic breakfast of steel cut oats, a fresh fruit salad, breakfast muffins, and stuffed the basket with an assortment of tea bags. It was the first real meal I had eaten in days!
Reading was nearly impossible in the hospital because I couldn’t concentrate long enough to keep the story straight. I appreciated magazines with short articles and lots of pictures, Soduko, knitting, scanning news on my iPad, and binge watching shows on Netflix. My favorite series was Friday Night Lights.
Don’t believe everything you read on the Internet. Give yourself a break from social media so you won’t be tempted to compare yourself to others that look like they have a perfect life.
When I was going through the darkest days with my son, I decided to write a daily gratitude list and email it to one friend, the same friend, and she sent me a list back. It began changing my outlook on life. Now on hard days, I send my friend many lists to help get me through those hard days.
Start a journal. It actually helps to get your feelings out of your head and onto paper. You might keep one at home, one in your car, or a small one tucked in your purse. In addition to purging angsty feelings, I make a point to write funny things that my kids say. Looking back later, I am reminded of all the reasons why I love them so much.
Stop to pet a dog or cat, or watch birds soar across the sky. Animals have a way of grounding us and reminding us to live in the moment.
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, 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.
Laughter truly is the best medicine! A hearty laugh is contagious. It reduces the stress response, increases resilience, boosts immunity, combats depression and relieves pain. When I was stuck 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.

Here’s a short list of resources to help get you started:

AUTISM

The word ‘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, and chances are, your community and local school district will be able to guide you to help. 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.)

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

Check out articles in ParentMap Magazine (www.parentmap.com) 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: https://www.parentmap.com/article/learning-disability-resource-helps-parents-feel-understood. Nancy also reviews books about special needs parenting here: https://www.parentmap.com/article/new-books-about-special-needs-and-learning-differences-to-help-parents.

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 stated they were ‘on the cusp of comedic success.’ You can find this hilarious four person comedy troupe on Netflix.

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.

SELF CARE

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 pain and a range of conditions and life issues 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

Get a massage! When it gets right down to it, human touch is more powerful than any remedy medicine can throw your way. There are more styles 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.

HEALTH & WELLNESS

Taking care of your mind and body is equally important 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 in the middle of 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. A great resource for therapists nationwide is: psychologytoday.com.

Don’t forget to feed your body good food! Eating fresh, in season, 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.

FAITH

Nothing makes you question the existence of God like a personal tragedy. Don’t be afraid to face these hard questions. Make time to look for a safe and healthy faith community. If you bring up death, doubt, or heavy drinking, 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 own 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 that happen in our lives, reminds us to breathe deeply and look for the good. You can find all her books on Amazon.

CHICKENS

Having backyard chickens is all the rage. Not only are they easy to raise, you will have fresh, organic eggs filling your refrigerator every day! For anything you ever wanted to know about raising and caring for chickens, check out Gail Damerow’s books. My favorite is called, Storey’s Guide to Raising Chickens.

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!

HUMAN-ANIMAL BOND

The human-animal bond is a mutually beneficial and dynamic relationship between people and animals that positively influences the health and well-being of both. Research has shown that connecting with animals eases stress, pain, and improves overall functioning in adults and children alike. If you are considering a service animal for your child or loved one, these sites can help lead you in the right direction: cci.org, 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 astonishing way animals can heal even the most broken hearts and minds. A beautiful read!