We hear a lot about “resilience” among those who live with chronic adversity. What exactly does this mean and why does it matter? Two veteran parents/providers take a look at this topic as it pertains to parents of children with special needs.
Therese and Lynn are moms of adult daughters with special needs. Therese’s daughter, Sabah, is now 32 so she has had many years to reflect on how parents build resilience in the face of adversity. She recalled the early years when she felt the guilt that many moms feel and her focus was on “fixing her” with many therapies and interventions. At the time, she wasn’t aware that she was grieving but she was. She wondered “why me” but also thought “why not me?” It was in Sabah’s teenage years that Therese shifted the focus to her quality of life. One thing that helped was that her family never did treat Sabah as disabled and always included her wherever they went. Therese also always had expectations of her daughter, not by any other yardstick but her own, meaning that she knew she could learn and grow toward whatever her capacity might be.
Therese knew she had a choice about accepting what she couldn’t change and chose to make the best of it for the entire family. While getting a diagnosis was life changing, it wasn’t for the worse. Insight into the gifts was gradual but her family all agree that Sabah has made them better. While she has felt complete acceptance for many years, she always has hope for Sabah and has never given up.
In her guidance with families new to a diagnosis, Therese suggests they do as much as they can in the early years but no more than they can afford in terms of time, money, and energy. When having a bad day, go ahead! Cry, vent, feel lousy. But pick yourself up the next day. If you can’t, get professional help.
Here’s what we offer to parents who are searching for acceptance, looking for tools to help them cope not just for today but for the long haul.
What is resilience?
Resilience can be defined as the ability to successfully adapt to adversity.
Residents of New Orleans have been described as resilient as they slowly rebuilt their homes and lives after the traumatic devastation of Hurricane Katrina. People who have chronic health conditions may also be thought of as having resilience in facing recurring illness or pain. Parents of children with special needs who live with ongoing challenges such as poor sleep, stubborn, difficult to treat disruptive behavior, lack of awareness and acceptance by others, and barriers to services are another group in which resilience plays a role in quality of life.
Are people born resilient or do they learn to be resilient?
Resilience isn’t something we’re born with. It is developed over time through experience and learning. Adversity is part of life and there is no avoiding it. How we react to life’s challenges is what determines resilience. Becoming aware of thoughts, feelings, and actions allows us to gain perspective and reframe situations to be less stressful and problematic. It’s easy to “get stuck” in the difficulty and feel victimized by adversity. Choosing to do something different may feel like work but it is worth it in the long run.
How does one build resilience?
It’s important to keep this in mind:
• Adversity is part of the human condition. We all have challenges so instead of “why me?” think, “why not me?”
• Parents of kids with special needs are deeply invested in their role/relationship as caregiver. It is part of our identity and can be hard to let go of that but it is critical to be able to do that.
• Learning early on to ask for and accept help/let others step in is critical.
Life can be both hard and good. It doesn’t have to be hard and bad or easy and good.
• We can love our kids but not their diagnosis or challenging behavior.
• Assuming the worst of the world and others can be paralyzing for our and our child’s growth. It’s important to assume best intentions and look for the good. Life is so much easier for all if we do.
•Be a savvy news consumer. There are very sad and tragic things in the news, but try to remember there are a lot of good things happening out there too, they just don’t always make the news.
• Our child is not the first to . . . get a diagnosis, start treatment, start school, move to supported living. The point being that many others have gone before us and providers have experience doing this so assume competence and allow trust to develop.
• Strong emotions can inflate/exaggerate a situation, making it seem/feel much worse than it actually is, therefore our response is an overreaction and at times a hasty one based on feelings rather than evidence. For example: We start a new medication and on day three our child has a huge meltdown. We get very stressed about this and conclude that the med caused the behavior so we stop the med. Be patient. Be thoughtful. Give important matters the time and attention they deserve.
For more on resilience, check out this PBS resource:
http://www.pbs.org/thisemotionallife/topic/resilience/what-resilience
And in closing, Therese shared a piece she was given many years ago:
The Special Mother
Erma Bombeck
(Note: this was written many years ago and terminology may be outdated)
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth; son. Patron saint … give her Gerard. He’s used to profanity.”
“Forrest, Marjorie; daughter. Patron saint, Cecelia.”
“Rutledge, Carrie; twins. Patron saint, Matthew.”
Finally He passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one God? She’s so happy.”
“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”
“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.” The angel gasps – “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’. She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle, and will know it!”
“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side.”
“And what about her patron saint?” asks the angel, his pen poised in mid-air.
God smiles, “A mirror will suffice.”
