The Physical Manifestations of Grief in Caregivers

The Physical Manifestations of Grief in Caregivers

The Physical Manifestations of Grief in Caregivers

The physical manifestations of grief in caregivers are unexpected and pervasive. That, in a nutshell, is what God has been teaching me since the death of my mother on June 23, 2023.

Mom’s suffering was great during her final 2 years on this earth. My siblings and I had no desire to prolong her life through medical intervention. We rejoiced when her suffering ended. Her funeral was a celebration, a sharing of memories, a gathering of extended family who loved her and supported us. We wept, we hugged, we said our goodbyes, and my siblings moved on with their lives.

I tried to do the same. A few weeks after Mom’s death, my husband and I packed our new camper and headed west for a much-needed vacation. On the second day, we turned around due to truck trouble and prayed as it limped all 500 miles to our home.

Soon after our return I started limping due to foot pain. The foot pain moved into my leg and then into my hip. During this time my uncle, who was like a second father to me, died. In mid-October, physical pain landed me in bed. From there I limped to the doctor’s office, was diagnosed with a pinched nerve, given a cortisone shot, and started physical therapy.

In an attempt to spare you the details, here’s a pared down timeline of life from then until now:

November and December 2023: Physical therapy, physical therapy, and more physical therapy.

December 2023: Pinched nerve better, bursitis causes by pinched nerve exercises worse.

January 2024: Physical therapy relieves bursitis, but pain from iliotibial band (IT band) increases.

To read the rest of The Physical Manifestations of Grief in Caregivers, visit the Key Ministry website.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly with Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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Experiencing Post-Traumatic Growth while Raising a Child with Disabilities

Experiencing Post-Traumatic Growth while Raising a Child with Disabilities

Experiencing Post-Traumatic Growth while Raising a Child with Disabilities

Experiencing post-traumatic growth (PTG) while raising a child with disabilities may not be on your radar screen when you’re drowning in the stress associated with caregiving. The only growth that concerned me during our son’s medically fragile years was increasing his strength as he fought for his life. Paying attention to the stress I was experiencing while he struggled, and possible growth coming from it, never crossed my mind.

Now, as I reflect on the hot mess I was in 1982 after our son’s birth, I barely recognize the young and very stressed person I was then. The credit for my present lack of hot messiness goes to post-traumatic growth.

By now you may be asking yourself, “What is post traumatic growth, how do I sign up for the class, and how do I know it’s happening in me?”

Let’s start with the first question.

In a research study conducted by Taylor Elam and Kanako Taku, they define PTG as “the positive psychological changes as a result of a struggle with a major life crisis or traumatic event.” The crisis or event is the kind that rocks a person to the core and forces a re-evaluation of beliefs about the world. That sounds a lot like what many parents experience after a child’s diagnosis, doesn’t it?

Now, on to the second question.

The bad news is that I don’t know of classes about PTG. But according to Richard Tedeschi, who has worked extensively with traumatized veterans, you can facilitate and encourage your own growth in 5 powerful ways.

To learn more about experiencing post-traumatic growth while raising a child with disabilities, go to this link at the Key Ministry blog for special needs parents.

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Photo by Elijah Hiett on Unsplash

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly with Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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The Coronavirus, Trauma, and PTSD

The Coronavirus, Trauma, and PTSD

The Coronavirus, Trauma, and PTSD

The coronavirus, trauma, and PTSD have become an unholy trio in recent months. June is PTSD Awareness Month, and to mark the occasion this post highlights preventative tools parents can use with children. This excerpt from my book, Does My Child Have PTSD? What To Do When Your Child Is Hurting from the Inside Out), explains how parents can help kids process trauma so it doesn’t become PTSD.

Parents can practice proactive measures to help their children process traumatic events and thus prevent PTSD. In Trauma-Proofing Your Kids: A Parent’s Guide for Instilling Confidence and Resilience, Dr. Peter Levine and Maggie Kline promote a step-by-step process they call “first aid for trauma prevention.” They suggest following these steps after a child has experienced a traumatic event.

  1. Check your own body sensations first. Children are very sensitive to the emotional states of adults. Parents or other caring adults must compose and calm themselves before attempting to calm a child.
  2. Assess the situation. Look for signs of shock in the child, and if you see them, have the child sit with you until the shock wears off. 
  3. As the shock wears off, guide the child’s attention to his body sensations. Ask increasingly specific questions about how the child feels in his body to guide him back to the present.
  4. Slow down and follow your child’s pace by careful observation of changes. Leave time between questions for the child to resolve each cycle of emotions, and be alert to cues that indicate a cycle is complete.
  5. Keep validating your child’s physical responses. If your child is trembling or crying, put a hand on his shoulder and tell him it’s okay to let the scary stuff out.
  6. Trust in your child’s innate ability to heal. This gets easier as you practice the steps of trauma first aid. Remember not to rush the process, and give your child the necessary time to process excess energy and expel it.
  7. Encourage your child to rest, even if he doesn’t want to. Dr. Levine and Kline believe that sleep helps a child process the event and discharge energy. By providing a calm, quiet environment, you help your child complete the healing.
  8. Attend to your child’s emotional responses and help make sense of what happened. This step comes later, after the child is once again calm and rested. Set aside time to ask the child what happened. Give reassurance that it’s okay to feel scared, sad, guilty, or embarrassed. Share a story about a time when you felt like your child feels. Assure your child of your unconditional love. Give your child time to retell the story using drawing, clay, or play.

When our son was four, he needed one final corrective surgery on his esophagus and stomach. Many, many years later he told me, “When they took me into the operating room, it was so scary. They wheeled me in on a hard bed. The operating room was icy cold. The walls were glaring white, and the lights were so bright they hurt my eyes. Then these people without any faces leaned over and told me everything was okay. But it wasn’t okay. It was terrible. And I went crazy, trying to get off the table and flailing my arms until those people without faces pinned me to the table.”

His words perfectly described what masked OR nurses must have looked like to him—people without faces. His recounting also reminded me of what a nurse said after our little boy arrived in the pediatric intensive care unit. “He went crazy.” She sounded none too pleased. “He pulled all the monitor wires and his IV.”

“Let me go in to him,” I said. “I’ll calm him down.”

“No,” she said firmly, “not until he’s settled down.”

I waited a long time, helpless and hurting, before they let me see him. If I had known then what I know now, I would have insisted on seeing him immediately. And if trauma first aid had been around back then, I would have used it to help him process what had happened to him.

Before entering his room, I would have taken some deep breaths to calm myself. Then I would have prayed for calm beyond what I could muster on my own. Once in the room, I would have taken time to study his face. Was it tear-streaked, pale, his expression pained? And then I’d have checked his body for signs of shock. Was his body rigid? Trembling? Was his breathing too fast, too, slow, or labored?

Having just endured several hours of major surgery, our little boy would be in shock. I would have offered the best first aid possible at that point—sitting beside his bed, holding his hand, stroking his forehead, rubbing his cheek, and giving constant reassurances of “Mommy’s with you, Allen,” interspersed with verses of his favorite lullabies.

Eventually, as the shock of the situation and the surgical pain eased, perhaps once he had moved to a regular room, I would have asked, “Allen, how does your tummy feel?”

“Hurts.”

“Does anything else hurt?”

“My foot.”

“Yes, the needle in your foot must hurt. Does your hand hurt, too?” 

He would hold up his hand and look at it. “No. No owie on my hand.”

“Then can I hold your hand?”

Allen would nod, and I’d hold his hand. “Let’s pretend we’re holding a bunch of balloons together. Are you holding them tight?”

He would nod.

“Now, let’s pretend to put all the owies from your tummy and your foot inside the balloons.” I would wait a few seconds. “Did you do it?”

He’d nod again and smile a little.

“Okay, on the count of three, we’ll let go of the balloons and watch them carry your owies out the window and into the sky.”

He would smile again, and we’d look out the window, imagining the balloons disappearing in the bright blue Iowa sky. I would notice that his body would be more relaxed and his breathing would have calmed.

Over the next few days in the hospital, several times a day, I would have looked for signs of shock or pain returning. When it did, I would’ve repeated the questions about where he hurt and how, along with questions about what parts of his body didn’t hurt. Then I would have helped him focus his attention on where his body didn’t hurt, perhaps by playing clapping games or singing silly songs, along with hand motions.

And we could’ve made up stories—a favorite pastime for him—about one of his stuffed animals having a sore tummy after surgery. The story would have included the main character being frightened in the pediatric ICU and pulling at wires and needles. When Allen appeared scared by the story or trembled, I would have paused until his reaction, caused by the pent-up energy inside him, subsided. I would’ve reassured him, “Mommy’s here. I’ll stay right here until the scary feeling goes away.”

Had I known then what I know now, we would have repeated the stuffed-animal-has-surgery story for several days or weeks or however long it took until he could process all the trauma and dispel the energy trapped inside. Perhaps he would eventually have been able to further process the event by telling the story back to me in his own words.

Excerpted from Chapter 11 of Does My Child Have PTSD? Does My Child Have PTSD? What To Do When Your Child Is Hurting from the Inside Out (Familius, 2015)

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is both parent and daughter of loved ones with special needs and disabilities, as well as a former educator who worked with children for 25 years. She’s written several books about caregiving, special needs parenting, and childhood PTSD, including the recently released Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilties, which she co-authored with Dr. Gary Chapman. She speaks internationally about caregiving and parenting children with special needs and blogs at www.DifferentDream.com. Jolene and her husband live in central Iowa.

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I Am Here. You Are Safe.

I Am Here. You Are Safe.

I Am Here. You Are Safe.

I am here. You are safe. These are words children who have experienced trauma need to hear from their caregivers. First time Different Dream guest blogger Heesun Hall explains how she and her husband discovered the importance of saying, “I am here. You are safe.” to their son and how it calms him.

My son had a major orthopedic surgery back in 2013 when he was 9 1/2. The surgery was necessary to address imbalances in muscle tightness and bone development in his legs and feet caused by cerebral palsy. Thile he had endured medical treatments and surgeries while in the NICU during the first 5 months of his life, this was different experience.  

The moment the nurses wheeled him, drowsy but still aware, away from us, fear filled his eyes. We let him know that we would be there for him when he woke up. He continued to stare at us. Once through the double doors leading to the operating room, my husband and I cried as we held each other, praying that we would meet our boy on the other side.

Many hours and many updates later, we were with our son as he started to wake from the anesthesia. When he opened his eyes, we could see fear and pain. He was lying in bed with casts that covered him from his feet to mid-thigh. While he may have understood the need for it, he was not prepared for the reality of what his post-surgery life would be like. Neither were we.  

The more long-lasting and significant legacy of that surgery was the emotional trauma he manifested through sleep disruptions. Not only was Max unable and unwilling to fall asleep; but also, once asleep, he would wake several times screaming in terror. Initially, we would try to “talk him out” of his screaming and thrashing. But the more we tried to speak to him, the more his behavior escalated. He was operating from a place of fight/flight, reliving the trauma of his surgery, so trying to reason with him was not connecting with what he needed. His thinking brain had been hijacked, and he was acting out from his survival brain.

I had read about childhood trauma and the importance of helping a child to feel safe. Based on this, my husband and I developed strategies to deal with his sleep issues. Before bed, while he was calm and receptive, we would let him know that we would be there for him by saying, “I am here. You are safe.” Because Max needed some type of physical contact as reassurance, one of us would stay with him. Sometimes, it was holding his hands.  Other times, once the casts were removed and he was able to sleep on his side, it was draping an arm across him until he fell asleep.

What used to be a nightly occurrence, almost 7 years later, are not as frequent or intense. What remains is his need for one of us to be near when he goes to sleep each night. Now we have a family sleeping room where we drift off each night. When he wakes in the middle of the night he calls for me, I respond with “I am here. You are safe.” I place my hand on his back to reassure him of my physical presence, and he drifts peacefully back into slumber, resting in the knowledge that he is indeed safe.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Heesun lives in Colorado with her husband and two children, Max and Jozey.  Her son, Max, is a surviving twin who was born 14 weeks premature.  Max has cerebral palsy as a result of a brain bleed during his first few days of life and developmental delays due to his prematurity.  As a homeschooling mom, she enjoys living life with her children, learning alongside them as they grow and develop.  She recently started blogging at www.mozeyingalong.com to share her journey with others.  It is her belief that the children we have are the children we need to grow into the best version of ourselves. 

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How to Find a Trauma Therapist

How to Find a Trauma Therapist

How to Find a Trauma Therapist

Finding a skilled trauma therapist for parents who live with secondary trauma because of the stress experienced while raising children with special needs can be a challenge. However these steps can help parents who want healing to find trauma therapists in every area of the United States.

How to Find a Quality Trauma Therapist

Step 1: Ask Around

When you need to find an eye doctor, dentist, or a specialty doctor, you probably ask other friends or co-workers for recommendations. So why not follow the same strategy when looking for a trauma therapist? Be sure to ask people whose judgment you trust and then continue your search using steps 3–7 below.

Step 2: Use a Therapist Locator

If Step 1 proves fruitless, all is not lost. Psychology Today has a user friendly therapist locator at their website. Just type in your zip code and a list of therapists in your area will pop up. Another good therapist locator can be found at the Good Therapy website.

Step 3: Screen the List

Scroll through the list and jot down the names of therapists who meet these basic criteria:

  • They have trauma-specific training.
  • They do more than talk therapy (look for therapists who use hypnosis, Eye Movement Desensitization Reprocessing (EMDR), guided imagery, neuro-feedback, and play therapy rather than Trauma Focused Cognitive Behavioral Therapy (TF-CBT).
  • They operate from a worldview consistent with yours.

Then go back and read through each profile and circle the names of therapists who meet your criteria.

Step 4: Call Your Insurance Company

Call your insurance company to find out which therapists are within your network. Cross off those who aren’t.

Step 5: Do a Phone Screening

Call the offices of the remaining names on the list. If a receptionist answers, find out when to call back to speak to the therapist directly. Ask questions about the types of trauma therapy they us, what training they’ve completed, what their fees are, how much is paid by insurance, and how long until an appointment can be scheduled.

Step 6: Visit a Therapist

Schedule a first visit with the person who rises to the top of your list. During that appointment, the therapist will conduct an intake assessment. If you like what you see, schedule a second appointment during which therapy will begin. But if you feel uncomfortable for any reason, move on to the next therapist on the list.

Step 7: Assess the Situation

If you visit the therapist for an hour a week, you should feel like you’re making progress in a few months. If no progress has been made after 3-6 months of treatment, find a different therapist.

How Did You Find a Trauma Therapist?

Have you found a qualified trauma therapist who has helped you deal with your trauma? Give them a shout out in the comment box and add more tips about how you found the right person.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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Effective Trauma Treatment for Nonverbal Children

Effective Trauma Treatment for Nonverbal Children

Effective Trauma Treatment for Nonverbal Children

Effective trauma treatment for nonverbal children doesn’t get talked about much (no pun intended), as I discovered recently during a Facebook group discussion.

A group member posed a question about trauma treatment for nonverbal children, and I passed it along to the group. Imagine my surprise when only one person had any suggestions. I reposted a question a week later in case anyone missed it the first time. A few parents said they hadn’t responded earlier because their children were verbal. But nobody added anything new to the discussion.

Resources about Trauma Treatment for Nonverbal Children

Our combined lack of knowledge has niggled at me ever since. So I did a little research on the subject and am passing what I found on to you.

  • The resource mentioned in the Facebook group was about a therapy called neurological reorganization. Here’s the website for Bette Lamont, the therapist who helped the Facebook member and her family. I’m not familiar with this treatment method and am not endorsing the therapy or therapist. Be sure to thoroughly research the method and therapists before pursuing either.
  • The National Child Traumatic Stress Network (NCTSN) has created a fact sheet about empirically supported treatments and promising practices they’ve developed and implemented. The NCTSN is a leader in the field and highly respected. The fact sheet page at their website lists several treatment methods that can be used with children from birth onward. Since babies are considered “nonverbal” from birth to age 3, my assumption is that those methods could be used with older nonverbal children, too.
  • Another resource that might be helpful is Bessel van der Kolk’s amazing book The Body Keeps the Score. In it he clearly describes dozens of trauma treatment methods and their effectiveness. The information in the book provides many treatments parents can research and pursue on behalf of their children.

What Can You Add about Trauma Treatment Methods for Nonverbal Children?

If only I had more to pass along to you about trauma treatment methods for nonverbal children. I don’t, but perhaps you do. Please share what you know in the comment box. Perhaps your information will help nonverbal, traumatized children get the therapy they need!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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