From the moment you hear the diagnosis of your beloved child’s disability or special need, there’s a cold undercurrent of fear and worry that flows through your veins. Actually it begins earlier when you see, hear and feel deep within that something is amiss with your child.
No matter his or her age or diagnosis, there are dozens of complex issues, responsibilities and obligations (and joys, I’ll add) that go hand-in-hand within this unfamiliar realm your family finds itself in.
As a parent or sibling of a person with physical, intellectual or emotional limitations, the range of emotions is deep and intense, from denial, sorrow, inadequacy, jealousy and anger, to gratitude, pride and joy. These naturally ping-pong back and forth from time to time, too, so be patient with yourself when feeling scattered or conflicted.
“Smile and put your best foot forward” is good advice, but we’re all human and don’t always see stumbling blocks that trip us. Honestly, home life with a disabled family member can be draining and demoralizing. I know; our family has been walking this path with Miss Heidi, our beautiful daughter with Down syndrome and late-onset autism, for over 27 years.
Yet, life is also incredibly beautiful, inspiring and deeply fulfilling.
I’m suggesting a simple tool our family used to tame the tension. Best of all, it’s cheap, safe and always available.
Saying positive things aloud and silently really works. Don’t believe me? Just ask any successful athlete, coach, teacher or salesman. It’s important to have a few visual reminders placed around your daily environment, because when you’re exhausted or in a state of stress, you simply don’t remember to grasp this easy tool.
Start today with any paper, then perhaps purchase a small pack of blank 3 x 5 cards found in school/office departments. There are also cheerful neon colored cards, scrapbook papers or cards with appealing decorations that I enjoy. I have found Post-it style notes cling for a while, but sometimes curl and slip off my bathroom mirror or fridge, but you decide.
Really ponder about what you want to re-train your mind to do when it’s in a heavy, negative rut. Remember to use words of how you want to feel, even if you’re not in that state at the time. Make them kind, please. For example, “I am calm and centered” is much better than “Stop worrying!” or “I won’t cry in public.”
Experts consider sentences starting with “I am …” as power statements. Brain studies indicate saying positive affirmations not using the word “don’t” as far superior, because the brain doesn’t recognize “don’t” like most naturally do. So if your note reads “Don’t yell and scream!” your brain misses the ‘don’t’ part and thinks, “yell and scream” is its command. So please write what you do want, such as “I am speaking with care and kindness.”
When you say positive statements out loud, or in your mind, say them with conviction — like you mean it — for more effectiveness. Even if this feels silly, do not let yourself slide back into the mud and mutter, “This is stupid and pointless,” etc. Trust the process. Say them silently if you must, or go in a room alone. Seemingly small and simple steps can make a big impact to retrain your brain, and help strengthen your fragile soul, too.
Post your positive affirmations where you can see them when needed, like inside a frequently used cupboard door, your closet area, or desk, etc., so you see them often. However, be careful that all these signs don’t contribute to visual clutter, which can be draining.
Some affirmations I’ve enjoyed over the years are: “I am safe and loved; Take time to self-nurture, so I can help others; Be patient with Heidi, progress/healing takes time and consistency; I am a good parent, yet can ask for help; Angels are among us; Prayer works; Be of good cheer; It all works out in the end.”
I’ll always remember after my mother had a heart attack, my father diligently cared for her, juicing fresh veggies and making gluten-free foods to feed her — yet, he forgot to eat! This is a common pattern for caregivers. Dad actually lost weight. He made up a 3 x 5 note card near his scriptures to remember to feed himself, not only spiritually, but physically, too.
My sister-in-law is currently the main caregiver for her husband with diabetes and numerous complex health challenges, and I recall a slight modification that she did for years. She kept a 5 x 7 card of several positive points in her purse, so no matter where she was, the truthful facts were easily accessible for her to review, rewind and renew her attitude.
If you want to decrease the continuous flow of worry while sitting in medical waiting rooms, waiting for your loved one’s treatments, or standing in line at the pharmacy, you may want to keep an affirmation card in your wallet or purse and focus on that instead.
A week or so before a stressful meeting with your teenager’s school district representatives, or some Medicaid budget review, consider taping a small note on your car dashboard so you can visualize yourself as calm, strong and positive.
Here’s another easy “car tool” tip: Whenever you’re at a stop sign or red light, use those few seconds to take several slow, deep, belly breaths. We all need more oxygen for our brains, blood and heart to function better.
Take care. You can walk this path, and I will help you with more techniques and experiences. Email me what you do to keep sane through your challenges. Hand-in-hand, we’ll make it.
Pearson is an international disability advocate, and an award-winning freelance writer from northern Utah. Her email is: firstname.lastname@example.org.