Resiliency & Special Needs Parenting: You Got This!

Have you read Welcome to Holland, an essay by Emily Perl Kingsley, a Sesame Street writer and parent of a special needs child?  She intended it to help others understand the Herculean task of parenting special children.  You can find a YouTube version created by Renay Jones, or you can read the abbreviated text here:

“When you’re going to have a baby, it’s like you’re planning a vacation to Italy.  You’re all excited.  You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head for the airport. Only when you land, the stewardess says, WELCOME TO HOLLAND.  You look at one another in disbelief and shock, saying, HOLLAND?  WHAT ARE YOU TALKING ABOUT?  I SIGNED UP FOR ITALY!

But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must stay.  
'BUT I DON’T KNOW ANYTHING ABOUT HOLLAND!' you say. 'I DON’T WANT TO STAY!' But stay you do.  You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed.  The important thing is that you are not in a bad place filled with despair.  You’re simply in a different place than you had planned.”

The essay goes on to expand the metaphor, describing the beautiful and unique features of Holland.  It closes with the experience of the loss of the dream: “The pain…will never go away.  You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss.  But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.”

The theme of Kingsley’s essay involves resilience, which has been called “the courage to come back.” What is resilience anyway?  According to the American Psychological Association, resilience is defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress.” You can see that this ability to adapt well is a superpower to activate, a valuable force for us as we parent our special children. Good news:  Resilience is a normal response, not an exception.  Resilience will also likely include some level of emotional distress—the adversity demands the resilient response.  Resilience involves behaviors, thoughts and actions that can be learned and developed in anyone and in any parent.

What has resilience research revealed?  A 32-year longitudinal study by developmental psychologist Emmy Werner followed a group of 698 children in Kauai, Hawaii, from before birth through their third decade of life. This study provides great insight into resiliency:
            One-third of the children were at-risk (came from unstable backgrounds, etc.)
            One-third of the at-risk children flourished in the face of adversity.  Why?
The research revealed that these children experienced an “internal locus of control.”  They believed that they, and not their circumstances, affected their success.  These children also learned to weigh the circumstances and adapt; for some, resilience was learned over time.

Lastly, the children learned to adjust perception:  Do you interpret an event as traumatic or an opportunity to grow?  It’s only traumatic if you experience it that way. Do parents of children with special needs experience trauma, stress, adversity and the like?  The answer is YES!  The stress can manifest in many ways: pushback from IEP teams, student safety concerns, homework struggles, scheduling challenges like managing multiple appointments and activities, limited family support, financial strain, and more.  Furthermore, research has found that moms of autistic children--especially those parenting teens and adults with ASD--experience chronic stress similar to that endured by combat soldiers.
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In light of this and other research, how do special parents become resilient?  First, remember that each of us responds to adversity individually.  Find the strategies that work best for you.  Also remember: “Children learn more from what we do than what we say…so your resilience affects theirs.” -----Mark Bertin, mindful.org.

Some Resilience Tips to Consider:
1.Accept that change is part of life.  Accept what is and what isn’t a part of your story.  Focus on what you can change.
2.Take action!  In areas that are under your control, do something instead of hoping that the adversity will go away by itself.  For example, email your child’s teacher about your concerns; request an IEP meeting to review data towards progress, etc.
3.Look at what you’ve gained.  Take time to identify the skills, strength, and knowledge that you have gained through adversity.

You can be resilient in the face of your unique challenges as a parent of special needs children.  Believe that you, not your history or circumstances, control your success.  Begin to weigh circumstances and adapt as needed.  Like the children in the Werner study, be willing to alter your perception of yourself and your child’s circumstances in ways that serve you both.  Use the gifts and skills that you have to move yourself and your family forward!
 
 
References:

• https://www.apa.org/helpcenter/road-resilience
• https://greatergood.berkeley.edu/article/item/how to build a resilient family when your child has developmental differenc
• https://www.newyorker.com/science/mariakonnikkova/the-secret-formula-for-resilience
• https://www.disabilityscoop.com/200911/10/autism-moms-stress/6121
•  Book: Wrightslaw:  From Emotions to Advocacy (2nd Edition):  The Special Education Survival Guide, by Wright & Wright
• Songs:  Don’t Worry, Be Happy, by Bobby McFerrin; “An Attitude of Gratitude” by Jimmy Buffett

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Thank you to Betsy Hamblin of San Diego, CA who often serves as a writing consultant at Sanford Autism Consulting.

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