Journaling Your Way Through Stress

“Support groups don’t seem to work for me.  I do get something out of them when I’m there, but day in and day out, sometimes it feels like more than I can bear.  Is there anything else that I can try?”

This is a question I commonly hear from parents of children with autism or other special needs.  Often we are told to take one day at a time, and that is a helpful concept when we are trying not to be overwhelmed about the future.  But what can you do when one day is just too long and too hard?  Try reaching for a pen and paper.  Keeping a diary, or “journaling”, can be an extremely effective tool for discovering our innermost thoughts and releasing tensions. Setting aside 10-15 minutes to put your thoughts into words may just help to reduce your stress or get its physical symptoms under control.

Many people believe that it is easier to hold in their feelings, but nothing could be further from the truth.  In ancient Greece, Hippocrates, the father of medicine, stressed that emotional factors could be a contributing cause in disease as well as a factor in recovery.  In more recent times, research psychologist James Pennebaker and others have found a mountain of evidence that demonstrates that disclosing our pain when we=re suffering through a major upheaval can greatly improve our physical and mental health.  Conversely, holding it in can lead to recurrent health problems as serious as colds, flu, high blood pressure, ulcers, and even cancer.

Having a child with a disability certainly qualifies as a “major upheaval.”  The inhibition of our upsetting thoughts and feelings is physical work, the burden of which can lead to long-term health problems.  People who can open up in a group generally report that they enjoy it and learn from it.  In addition, their health notably improves–which incidentally provides the scientific basis for the rapid increase of self-help groups for all sorts of problems.  But “one size does not fit all.”  Not everyone can open up in a group, and even for those who get great benefit, the group isn’t always there at the time you may need comfort and support.

According to Pennebaker in Opening Up: The Healing Power of Confiding in Others (New York: Avon, 1990), writing about our inner turmoil can also be therapeutic.  Writing helps us to organize and understand our thoughts and feelings.  Keeping a journal that we write in with some regularity can thus be extremely helpful for our physical and emotional well-being.  By translating the feelings about the events into words, we can gain perspective and understanding about ourselves and what has happened.    When we confront upsetting circumstances by talking or in writing, we are often relieved to discover or rediscover that we are not alone, and this helps us gain insight.  We can see ourselves as just ordinary people who happen to be going through a difficult ordeal, and this may be a great consolation.

On a practical note, don’t let journaling become a stressor in itself.  Writing as a method of emotional release should be done when you feel the urge. It can be daily, weekly, monthly, or just when you feel like it.  One technique is to try writing in response to a question.  Here’s a few to get you started:

1. What’s been really hard about being a mother or a father today?

2. What have I learned from this?

3. What moment that gave me pleasure or satisfaction?

4. What contributions have I made to my child and my family today?

5. How do I feel about my life in general?

Another way to approach this is to complete a sentence stem.  Here are a few that I use in the workshops I present:

1. The best thing about my child is…….

2. The worst thing about my child is……

3. A feeling or thought that I am embarrassed about is…..

4. Something that made me proud lately happened when…..

5. The worst thing about my spouse is……..

6. The best thing about my spouse is……

7. The nicest thing someone said to me lately was….

8. I hope that……

9. I grieve about my dream that will never be….

10. 10.I dream a new dream that…..

11. My child has taught me that…

12. I am becoming a better person because…

Try to just let it flow. What comes out may surprise or enlighten you.  Often in a conversation the flow of the interaction will unleash thoughts we never knew we had.  Writing expressively can do the same thing.  Thoughts and feelings will emerge from your inner self.  The important thing is to look for meaning and growth.  Merely writing about the same painful things over and over will not bring healing.  Focus on thought as well as emotion in order to tap into your inner healing power.  Keep track of your growth or change as you write about your experiences.  Searching for new realizations and understandings will keep you on a path of healing.

Web sites about journaling can help you get started.  http://healing.about.com/cs/selfactualization/a/journaling.htm , for example, offers techniques, and tips.  If you don’t take to journaling, or if you tend to get more upset instead of less, then try another approach:  go to a support group, talk to a fellow parent or close friend, read a good book on the subject, or seek assistance.  Sometimes a mental health professional (a social worker, psychologist, or psychiatrist) or a member of the clergy can be helpful to you in understanding your needs.  Some people are reluctant to take this step, but when it becomes hard to function from day to day, this kind of help may be in order.  Just as you would consult a specialist for your child if necessary, do likewise for yourself.  It is intelligent and wise to acknowledge your own needs as well as your child’s.  You deserve it.

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Making a Difference with Autism: Lessons in Acceptance

Logo of the Kuwait Centre for Autism

Hearing that autism cannot be cured is a bomb for families at the moment of diagnosis. On the other hand, learning that we can make a difference is the first step on the path to acceptance. This message is crystallized in the logo of the Kuwait Center for Autism which I visit twice a year doing consultations, evaluations, and second opinions for families. This center was founded in 1994 by Dr. Samira Al Saad, to meet the needs of her own daughter and others in the Arab world.

Mothers and fathers there are asking the same questions I anguished about over 30 years ago when my son was diagnosed with autism.

Questions like:

• Is there a cure?

• Will my child ever talk?

• What level is it?

• Did vaccines cause this?

• What about special diets?

• Can medication help?

• Can my child have a relationship?

• Will my child ever be independent?

• What’s the risk if we have another child?

• Finally, how can we help our child?

As I listen, inevitably I relive parts of my own journey living, learning, and accepting day by day the differences that autism has made for my family. Many people in Kuwait speak English; others come with a family member or friend to translate; all speak from the heart. Like other human experiences, there are no borders. While we have cultural and language differences, we have far more in common than different. As one father of a five-year-old boy told me, “We are still grieving, but we must take action.”

These are questions I ask:

• What does your child like to do?

• What’s the best thing about your child?

• What do you enjoy doing with your child?

• When are things going pretty smoothly

This father brought his family from Bahrain for a consultation.

The discussion of these questions points the road to acceptance by helping parents to think beyond the diagnosis. Too much emphasis on trying to change or fix the child spoils the loving which is at the core of the relationship between parent and child. Children growing up with autism need positive, energetic parents enjoying and loving them as they are and simultaneously cheering them on for every little achievement. Scientific evidence points to the trend that individuals with autism, just like typically developing individuals, can learn and progress through their lifetime. Early diagnosis, intensive evidence-based services, and parent involvement are all essential.

Autism Speaks, the world’s largest autism organization has finally come to the point of view that curing autism is not as important as acceptance. As self-advocate and Autism Speaks board member Stephen Shore recently stated in the Huffington Post, “the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum…Autism is here to stay and may be considered a part of the diversity of the human gene pool.”  Of course, breakthroughs in research are  more than welcome, especially since medical complications and comorbidities can severely limit some individuals who deserve and need more supports through their life time.

Saying good bye,”ma’al-salamah,” to Dr. Samira at the end of my visit.

It’s been an honor and a privilege to listen to the challenges facing families in Kuwait and to help them find hope through increased understanding of autism alongside love and acceptance. Listening I continually find a deepened understanding of our shared humanity. Remembering that we are hardwired to respond with compassion to each other’s joys and sorrows, the growing connectedness in the world has the potential to tear down barriers and unite us.

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4 responses to “Making a difference with autism: Lessons in acceptance”

1. dkauer

   Oct 26, 2016 at 12:55 pm

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   Did I read this correctly? Autism Speaks a very well funded and well respected autism group that has until more recently directed their funds for researching a “cure” for Autism now embraces Autism and people with Autism in itself as a human condition like “Autism lives matter” and they are now promoting fulfilling and productive lives for our loved ones living on the spectrum? I am so grateful for powerful people who are willing to change and do what is good for children (adult) like mine and I am most grateful for advocates Dr. Robert Naseef who has quietly worked in the trenches with families like mine in the Philadelphia area until more recently when other countries in other parts of the world with families like mine started tugging on his heart and needing his help. I honor Dr. Naseef and Dr. Shore for their patience and love for all of us who have been affected and afflicted. Finally I would welcome a “cure” but to focus on these last 20 plus years waiting for a cure would have left me bitter and angry. Instead I am so grateful for my son and grateful for the help I get when challenging situations present themselves.

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2. piwright04gmailcom

   Oct 26, 2016 at 2:09 pm

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   Great post-Robert. As a professional, I have to walk alongside families on this journey, without your insight as both a professional and parent. These families are so fortunate to have you providing professional support with an incredibly personal perspective.

   Liked by 1 person

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3. denisepowersfabianD

   Oct 27, 2016 at 1:33 am

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   As a social worker with children/families experiencing chronic/complex disabilities who also wears the parent role of a 28 year old profound autism, I surely resonate with your reliving the journey, continual learning and accepting. I have always advocated that our focus should be on applied research. I remember a self-advocate with Asperger’s stating in a presentation,”Do you know what it does to your psyche to constantly be told your natural way of thinking or doing is always wrong?” I cannot emphasize also the importance of controlling/modifying environments for those on the autism spectrum. Bob, you are a hero to both me and my Caleb.

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The Grandparents’ Connection with Autism in the Family

Grandparents are a vital part of a supportive extended family.  Grandparents can have as hard a time accepting autism as parents do, or even harder since they have less contact with their grandchild, and their acceptance can take longer.  Grandparents worry about their grandchild and also have to watch their adult child struggle.  They face the double grief of their grandchild’s diagnosis and their own child’s pain.

Grief often renders grandparents powerless to offer the support that their son or daughter longs for.  Grandparents may despair that they could not protect their child from this fate; they may worry that they have passed on a defective gene and that it could appear again in another grandchild.  They may also feel overwhelmed and guilty that they cannot help more.  Undoubtedly most were looking forward to a warm, indulging role with their grandchildren, without the responsibilities of being an authority figure.  Being involved with the new generation can be a source of special pride and satisfaction, but when confronted by autism, the role of the grandparent may not be what they expected.

Grandparents may lose their dreamed-for grandchild who was to be their legacy to future generations just as the parents often lose their dream-child.  Getting to know their actual grandchild can be more difficult because they are often removed from the child’s everyday life and because they may face the dual challenge of supporting their adult child in a time of tremendous need.

Voices from the Spectrum a 2006 book edited by Dr. Cindy Ariel and myself include several essays by grandparents.  In “An Unexpected Gift of Love” Oscar and Sally Olson share that, “…we could not help but wonder why this happened to our family.  As grandparents, our first concern was the heartache and seemingly overwhelming problems this would bring to my son and his wife.”

In “A Grandmother’s Story,” Elizabeth Nedler writes, “Autism is a frightening word…it is here to stay…However, it has not destroyed our family.  I am blessed with two grandchildren who love me and whom I love dearly…It doesn’t make my job harder, just more important!”

It can help to know that you are not alone with your questions and uncertainty.  In reading this blog, you are already on the path to having a loving relationship with your grandson.  Understanding autism can help you in providing the patience and understanding needed as you get to know each other.  Understanding your grandchild will involve more than just an understanding of autism because no two individuals are alike; they may share a diagnosis but personalities vary all along the entire human spectrum.

With the experience and wisdom gained from raising their own children, grandparents may have much to offer in sharing coping strategies and in discerning which issues are linked to the autism spectrum and which ones are the normal challenges of childrearing. Most of all, enjoy your family!

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Involved Fathers Get Results

Male role models are important for children, and boys and girls growing up on the autism spectrum are no exception. Fathers are more involved than ever, and research backs up their impact on children. However, when a child has autism there are often steep challenges for the typical male parent. Let’s take a look at the potential for growth and how to overcome the barriers that autism presents.

Research Findings about Father Involvement Generally and with ASD

• A nationally representative survey of over 10,000 men found that most American fathers report being heavily involved in hands-on parenting. (Jones and Mosher, 2013) 90% of these fathers said they bathed, diapered, helped with toileting or getting dressed, eating meals together, and talking about their day. Even more played with their children frequently. This type of father involvement has been shown to result in better academic success, fewer behavior problems, and healthier eating habits.

• Susan Adams recently reported in Forbes that men who spend more time with their children are likely to have a greater sense of satisfaction at work and less desire to change jobs. They are also less likely to experience conflicts at home according to Beth K. Humberd, assistant professor of management at University of Massachusetts and one of the study’s co-authors.

• According to Flippin and Crais (2011), studies of father–child interactions with typically developing children indicate that fathers offer different language models than mothers which make important contributions to children’s language development. Fathers tend to use a more complex language model than mothers, and this likely applies to children with ASD.

• New research from the University of Illinois also suggests that fathers who read to their infants with autism and take active roles in caregiving activities promote healthy development in their children and boost mothers’ mental health as well (Forrest, 2015).

• Through play, both mothers and fathers help their children develop language. A father’s play is typically more active and rough-and-tumble. As their child’s primary play partner, fathers have a distinctive role in supporting their child’s development through play. Research has demonstrated that interventions can improve both play and language outcomes for children with ASD (Kasari, Paparella, Freeman, & Jahromi, 2008).

It’s not easy to do in practice

When you love someone you want to be with them, but children with autism can be hard to be with. Typical children are engaged every waking hour, but it’s not easy to engage with a child on the spectrum. They often prefer to do the same things over and over again. Parents become easily exhausted or frustrated—not to mention feeling rejected and sad.

Even though there’s a huge potential for fathers to contribute positively to the development of children on the spectrum, many fathers feel powerless to engage in play with a child who has more repetitive and less varied play. Most fathers have a difficult time talking about their feelings especially when there is a problem that they are unable to fix. 80% of children diagnosed with ASD are boys which can be especially difficult for fathers who expected a different kind of son.

Make a Plan to go forward: What Fathers can do

First, acknowledge the spectrum of painful feelings including the sadness, hurt, frustration, anger, embarrassment, rejection, etc. Share your experience with your partner, family members, and friends who want to support you. Like the weather, your unpleasant feelings will come and go periodically. Accepting this experience opens the door to hope, building a connection, and celebrating every little step of developmental progress.

Second, spend some time each day joining your child on the floor, at the table, the screen, or outdoors watching and following your child’s lead, having fun, and building connection. Your child with autism is still a child and needs more than therapy. It may not be what you imagined, but it can still be wonderful regardless of the severity of the autism. As fathers, we cannot control the outcome for any child, but we do make a difference, and we can have a rewarding relationship with a child growing up on the spectrum.

Third, focusing too much on behavior and trying to change someone with autism can suck the joy out of your relationship with your son or daughter. This may seem impossible with your child’s behavioral issues, but this does not mean denying real problems. It just means paying attention and cultivating the moments we might overlook or ignore, when problems are absent, such as our children running to us when we get home, or our partner glad to see us after a long day at work or home or both.

Fourth, attend as many meetings as possible with your child’s school and other service providers. Don’t hide behind your work. Being an active partner in the parent-professional partnership is an opportunity for fathers to deepen their understanding of their child’s strengths and challenges and use their problem solving skills. Many couples report better results in collaboration with professionals, and mothers experience less stress and more happiness with their partner.

From my own experience as a father, I know my playful involvement added to the many laughs and cuddles my son experienced growing up with severe autism and at the very least my serious involvement helped him to be better understood and get the best help available. The science is in: wherever a child starts on the autism spectrum, with parent involvement and good services progress is possible; and father involvement makes a difference.

Sources

Adams, S. (2015, January 12). The More Time Dads Spend With Their Kids, The Happier They Are At Work, Forbes, January 12, 2015.

Jones, J. & Mosher, W. D. (2013). Fathers’ involvement with their children: United States, 2006-2010. National Health Statistic Reports; no. 71. Hyattsville, MD: National Center for Health Statistics.

Flippin, M. & Crais, E. R. (2011). The need for more effective father involvement in early autism intervention: A systematic review and recommendations. Journal of Early Intervention, 33, 24-50.

Kasari, C., Paparella, T., Freeman, S., & Jahromi. L. B. (2008). Language outcomes in autism: Randomized comparison of joint attention and play interventions. Journal of Consulting and Clinical Psychology, 76, 125-137.

University of Illinois at Urbana-Champaign. (2015, July 14). Dads’ parenting of children with autism improves moms’ mental health: Fathers’ engagement in literacy, caregiving activities reduces mothers’ depression, stress. ScienceDaily. Retrieved May 6, 2016 from http://www.sciencedaily.com/releases/2015/07/150714131600.htm

From The Autism Notebook, June/July 2016

For Mothers Day: Beyond flowers, cards, and going out to eat

Setting aside a day to honor mothers has ancient roots, but true gratitude requires expression .  A mother’s love is boundless, and this is a time to reflect on the sweetest memories of our mothers and grandmothers. Why is it so hard for moms to take a break? What can fathers do to help?

First of all, struggling with taking a break from maternal responsibilities is normal.  This is hard for the mothers of typical children—who presumably have a little less to be preoccupied about than mothers of children who have autism and other special needs.

So feeling overwhelmed by the enormous responsibilities of motherhood is normal, but when it goes on indefinitely, it’s not healthy for a mother or her family. And fathers tend to begin feeling left out and neglected.  While I frequently write about fathers, I spend a good deal of my time as a psychologist listening to mothers.  Almost invariably mothers seem to be relieved when they give voice to their struggles—particularly the guilt about not doing enough or missing something they should have done or thought about.

Opening up and connecting about upsetting situations can help. On the other hand, suggesting that a mother do more to take care of herself often makes her feel worse. Listening to mothers at Alternative Choices, we hear that this can sound like just one more thing to do. Their lists are already too long.  And another thing they just aren’t getting right—even more guilt!

One mom even told me, “My life seems like one long day!”

In contrast, the average overwhelmed father seems to have less difficulty taking a break. On the other hand, he may also have trouble talking about what he cannot fix or take action about.  He may shut down out of helplessness and emotional overload that he has no words for. The very same man may love his partner and children passionately; yet he may feel left out, ignored, and powerless.

This reaction offers no outlet for his partner’s feelings.

Still, most fathers admire when the mother of their children reacts like a mother lion with her cub, doing everything possible to raise their child.

So for this Mothers Day and every day really, here’s a plan for men:

• Tell your partner how much you appreciate her and everything she does for your children. Be specific about all the wonderful things she does and how hard she tries.

• Don’t do something.  Don’t make suggestions. Volunteer to just listen to how she feels.

• Ask what you can do to make her job easier.

• Gently and persistently keep asking and showing up to do stuff.

This is how to be a good man in your situation. Help her to take a breath, literally and figuratively. Let her know that she is indispensable.  No one can do a better job. In the words of Oliver Wendell Holmes, “The real religion of the world comes from women much more than from men—from mothers most of all, who carry the key of our souls in their bosoms.”

Finally, remember the most important thing a father can do for his children is to love their mother.

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