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The Grief Bursts of Autism

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The Grief Bursts of Autism: Working Through the Tough Times
by Susan Goewey
Autism Asperger’s Digest
| May/June 2010

It’s now been seven years since my son Luke was diagnosed with autism. Seven years of special diets, vitamin supplements, one-on-one tutoring, play and social therapies, speech, OT, ABA, stim-busting and IEP meetings. Eighty-four months of trying to engage him at all times, feeling guilty when I don’t, learning about autism, worrying about his and our future and how to pay for all this. Parenting a child with autism feels relentless. But it is also an experience full of love, joy, unexpected gifts and new friendships. In our family, we strive to see the glass as half full.  Luke has come a long way. Yes, every day is still hard, but not as hard as it used to be.

Even so, I do find myself faced with a new challenge. I call it A+ (“autism plus”), which doesn’t really sound like a challenge at all, does it? That’s because it’s sly and sneaky and it gets an A+ for the way it can catch me so off-guard. For so long I’ve put so much energy into helping my son that my own reservoir can run completely dry before I even realize it. And then I get in trouble.

Oh, I know what I’m supposed to do to build a reservoir of strength, the well that will sustain me while I deal with life’s problems. I am finding joy in the little things. (Luke learned to read! He asked a “Wh” question! We got asked on a playdate! We found a babysitter and can go out on a date! Luke learned to surf!) I do feel gratitude for the big things. (I have a healthy daughter! My husband has a job! We can pay our mortgage! Our marriage is still intact!).

Even so, I find a new challenge – of any proportion – can swiftly bring back a terrible pain I thought I was past…those bone aching feelings of grief I experienced when Luke was first diagnosed. I can go reeling into depression with frightening speed. My world turns sad again, like it did when Luke was first diagnosed and this all was so new. Psychologists call it “grief bursts.” It’s not unlike post-traumatic stress disorder that attacks you without warning, again and again.

Question: What kind of mother ignores her daughter’s problems? Answer: One consumed by her son’s challenges.

One of the major ways my husband and I cope with autism is relying on the joy and humor our (typically developing) daughter, Isabelle, brings us. Her problems generally seem so small in comparison to Luke’s that we (wrongly, I know) minimize them as long as we can.

But last year Issie got dumped by a friend. I found out one night as she and I stayed up late talking; she tearfully shared all that had happened that left her feeling confused and friendless. My own pain was way out of proportion to hers. I couldn’t sleep. She fell asleep, got up and went to school as usual. I just wanted to curl up in bed. Trying to figure out how to help her paralyzed me. I was stunned how quickly I spiraled into a panicky depression. I could barely write out a grocery list, much less formulate a plan to help her improve her social life.

It didn’t help that the day was cold and rainy. Knowing I only had a few hours to get things done before Luke got home, I dutifully wrote out my to-do list (easiest to hardest): 1) return library books 2) get groceries 3) clean house 4) take a walk 5) fix Issie’s social life.

Yeah, right.

Numbed to the core, I drove to the library. But instead of dropping the books in the slot and heading to the grocery store, I went to the self-help section. The very first book I saw, Healing Your Grieving Heart for Teens by Alan Wolfelt, became a lifeline. It was written for teenagers coping with the loss of a loved one. Never mind no one had died in our situation; coping with grief was what we needed. I started feeling slightly less panicked as I read. These teens had lost mothers, fathers, best friends, boyfriends, siblings. The truth is: Life is painful. No one is exempt. I remembered my husband’s observation while reading about the Virginia Tech shootings: “Whew…none of us has the market cornered on grief. You can get your pain a little at a time like we do with Luke, or you can think your life is going just great, send your kid off to college, and in an instant …more pain than you could ever imagine.

I checked out the book and continued to read, bundled up in my car in the parking lot, still unable to muster energy to go grocery shopping. Instead, as the rain beat on the windows, I found new insights on dealing with acute and ongoing grief – hers, mine, ours. The book suggested journaling. I took up a pen and started taking notes, rewriting the book’s suggestions to apply to my family’s situation. My racing thoughts slowed back to normal. (Psychologists would say I gained self-regulation and the improved perspective needed to take positive action.) I began to write out a plan.

She was depressed? I knew the single most effective non-pharmaceutical treatment for depression: exercise. I vowed to sign her up for a sport. She actually agreed to two, basketball and winter swimming. And her dad coached her team so he could spend more time with her.

She felt low self esteem? What strengths could I help her build on? She agreed to an after-school cartooning class. After her final basketball game, alongside the trophies her dad awarded, she gave each teammate a carefully drawn caricature highlighting each girl’s strength. The girls loved them.

I wanted to see her smile more? I’d read, “It’s impossible to sing without smiling.” She joined our church choir.

She needed more friends? I have friends who have kids her age. That very week, one of the moms in my church group asked me if she could hire Issie to be the caricature artist/mother’s helper at her daughter’s birthday party. Isabelle had so much fun and earned $20 as one of the entertainment attractions at the party.

With each step my daughter took connecting with others, she felt better and so did I.

Weaving a Lifeline of Support
Since my son developed autism, I’ve been advised (an annoying number of times) to “put your own oxygen mask on first.”  But when I’m hit with a grief burst, an oxygen mask isn’t enough.  I still need a lifeline to hold on to. And no matter how thin each lifeline may be individually, weaving a few together, I can make a sturdier rope of support.

Next time you’re hit with a grief burst – try a few of these lifelines and see if, like me, they help you find your strength again.

Understand the difference between grief and mourning. Grief is what you feel: numb, sad, anger, guilt, even physcial pain. Mourning is expressing the grief. Experts say you must express grief, let it out somehow. Cry. Talk about it. Write about it. Mourning can be awesome and powerful. Dr. M. Scott Peck, author of the groundbreaking book, The Road Less Traveled, defines mental health as a “dedication to reality at all costs.” Mourning is recognizing, not denying, painful realities and taking responsibility to accept and deal with them.

Reconciliation. You don’t recover from or get over grief. You become reconciled to it, and learn to live with it. You’re forever changed by it. Caring for a child with special needs is an ongoing challenge; we need to expect these grief bursts. Author of Talking with Children About Loss, Maria Trozzi notes we have individual “touchpoints” for grief: birthdays, back to school night, sibling milestones, family reunions, summer vacations, weddings, graduations, IEP meetings. Recognize yours and you are better prepared to handle them.

Acknowledge your need to mourn. Grief counselors identify common needs among the grieving: 1) Accept the loss. Your life/your child’s life before autism is gone. It will not be back. 2) You must feel pain before you can heal it. Your body doesn’t like pain, so it releases hormones and chemicals to heal you deal with it. But deal with it you must if you want to work through it. We all have a choice as to how we respond to challenges. 3) Let others help you, in person, via email or phone, via a support group, a play group, shared interests. I find my bible study group helps. We don’t share the same problems, but we do share compassion for each other. 4) Tell the story of your pain. Journal it, paint it, talk about it. Don’t be surprised to find yourself crying and even laughing with those you go to for support. Connecting to others really does help; finding joy in helping others can be the best therapy.

Work. Do not avoid obligations. Producing work helps refocus the mind. Wait until your best time of day to brainstorm creative solutions to your most pressing problems. Are you a night owl or a morning lark? Use that time wisely.

Drink lots of water. Even slight dehydration makes you feel tired and confused.

Eat foods good for you. There are no symptoms without a cause. Sugar and fats can lead from highs to lows and trigger depressive thoughts. Trans fats block the good fats your brain needs. An all organic, gluten-free, dairy-free diet helped our son’s symptoms of autism. Researching the best diet for Luke taught me so much more about nutrition. We all eat healthier now.

Get sleep! Symptoms of autism/ADD/depression become so much worse when you’re sleep deprived. Children (and parents!) need sleep for their brains to process information they’ve learned throughout the day. Our bodies need melatonin and it forms best in complete darkness. Turn off nightlights once children fall asleep. Turn your alarm clock dial toward the wall. Get room-darkening shades. Modern city lights have thrown our natural bio-rhythms off. We all feel better, stronger, after a good sleep. Don’t watch television or read disturbing news on the computer just prior to bed. Don’t pick up an exciting novel you can’t put down. Find semi-boring educational reading to lull your thoughts to sleep. (Personally, doing my small group bible study lesson in bed both comforts and lulls me to sleep.) If you’re anxious about something, journal about it in bed. Similar to the task analysis process inABA therapy, writing out small steps to take is calming, as opposed to staring at huge impossible goals such as “curing Luke’s autism.” Remember the Chinese proverb, “Every journey of 1000 miles starts with one small step.” You can only do one thing at a time and your list will get you started. But not tonight. Tomorrow. First, sleep. Everything looks better in the morning when you’re fresh.

Learn about the problem. Do your research. Engage your mind. Over my desk hangs a bit of advice for a young Arthur in The Once and Future King by T.H. White. “‘The best thing for being sad,’ replied Merlyn, beginning to puff and blow, ‘is to learn something. That is the only thing that never fails. You may grow old and trembling in your anatomies, you may lie awake at night listening to the disorder of your veins, you may miss your only love, you may see the world about you devastated by evil lunatics, or know your honour trampled in the sewers of baser minds. There is only one thing for it then—to learn.’”

Knowing that I’m “learning something” – even in my grief – helps keep me going, helps me ride through the grief bursts that show up at my door unannounced from time to time. Yes, autism is hard. But autism has helped us find the heroes within ourselves and others that we might have otherwise never know.

Handling Grief Bursts: Suggestions from Grief Counselors

Don’t be scared of grief outbursts. Expect them and know what works to address them. Journal, email or call a friend, read something inspirational or practical.

Get exercise. You need endorphins. A simple walk can clear your head and help you think of healthy ways to cope.

Listen to music. Soothing, energizing, melancholy, dance – whatever your soul needs to restore it, someone has written a song about it. You’re not alone in your pain.

Simplify your life. Agree to commitments you know will lift you (or distract you from your pain), and help you cope, and gain a sense of accomplishment.

Listen to someone else’s troubles. Support groups or bible study groups are good for this. Everyone struggles. You are not alone.

Ignore hurtful advice. Discussing the terrible grief of losing her 16-year-old son,  Elizabeth Edwards advises in Saving Graces:  “Remember, whatever painful thing a person might say, just remind yourself that they meant to say the right thing.”

Don’t neglect yourself. Soak in the bathtub. Inhale a beautiful scent like a rose – to remind yourself to breathe deeply. Eat right. Even if you’re not hungry, think of an apple or banana or a bowl of soup as medicine for your pain. Don’t get even slightly dehydrated – drink pure water.

Pray. Attend a worship service. When Luke was first diagnosed, I used to hide in the dark, upper tier of our church, alone with my Kleenex, so I could cry unnoticed. The beautiful music- happy or sad – always lifted my spirits.

Count your blessings. Start a gratitude journal. Even in your pain, you can always find something to be grateful for: the roof over your head, love of your parents, food on the table, the natural beauty of a sunset.

Remember, “Grief is a wise teacher.” As Wolfelt wrote in his book, “Loving and caring for others are our most important tasks here on earth.”

Susan Goewey is a freelance writer and former Director of Publications, University Continuing Education Association, a position she left to better parent her son who has autism.


Copyright © Autism Asperger’s Digest. 2010. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.

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