Trauma in Parents of Kids with Special Needs

Trauma in Parents of Kids with Special Needs

by | Oct 17, 2018 | Different Dream, In Parents, PTSD

Trauma in Parents of Kids with Special Needs

Guest blogger Jonathan McGuire wants you to know that trauma in parents of kids with special needs is real. He explains how he became convinced of that truth in this post.

Trauma in Parents of Kids with Special Needs

In the fall of 2012, instead of driving to Michigan to spend time with my wife’s family at a get together, I found myself in a small plane landing at a refugee camp on the border of Sudan and South Sudan. Instead of subdivisions and snow, I was landing in a country of extremes…

Thousands of people were fleeing to this camp as their own government was bombing their homes and soldiers were killing their families. It was a place where it was uncommon to see a grandmother or grandfather because the youth were sent in their stead so there would be hope for future generations.

It was my privilege to come alongside a group of refugees, help them begin processing their trauma and to train them on how to come alongside others. As tanks were attacking 8 kilometers from us, we listened to their stories of survival and death. At first, the individuals were seemingly devoid of emotions. Not only were there no smiles, there was no grief or tears. Remembering the different concepts we taught was difficult and some of them struggled with just staying awake. Most of the participants believed they had been cursed by God. And you know what?

As the father of a son with special needs, I felt like I could relate.
I could relate to just being in survival mode.
I could relate to the numbness, to questioning God and his promises.

As time progressed, the refugees were able to share their stories with each other. They were able grieve. They shared their pain through art, drama and song. They were able to gain hope through God’s word and begin the process of healing despite a life of uncertainty.

Does any of this resonate with you? When you brush into people and they ask how you are, do you struggle with knowing what to say? Are you struggling with unexplained mood swings, constant exhaustion? Maybe you too are wondering if God’s promises are true? You are not alone. Trauma in parents of kids with special needs is common among us.

Healing will take time. It may take years or for some even decades. It will go in phases. At times, you will feel on top of the world and others, you will be in survival mode. I encourage you to find those to talk to–whether they are a friend, a counselor or a group–who gets it. Find someone who you can be real with and share your struggles with even if it seems like you are struggling with the same things day after day.

I would also invite you to look to God and his word. If his promises seem hard to swallow right now, start by holding on to one simple but profound life-changing truth…

He loves you.

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Jonathan McGuire is married to Sarah and they have 2 wonderful boys. They are located in Northeast  Indiana. Jonathan and Sarah are the founders of Hope Anew, a nonprofit that comes alongside the parents of children with additional needs on spiritual and emotional level. You can follow Hope Anew on their Facebook page.

Author Jolene Philo

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PTSD in the Entire Family

PTSD in the Entire Family

by | Sep 20, 2018 | Different Dream, In Children, In Parents, PTSD

PTSD in the Entire Family

PTSD in the entire family? Can it happen? Today’s guest blogger, who is writing anonymously to protect her family, describes how PTSD in the entire family is a reality at their house.

PTSD in the Entire Family

I first recognized the problem in my daughter.

After multiple surgeries and hospital admissions for emerging illnesses, my daughter understandably displayed signs of stress and anxiety related to medical traumas. She was subjected to necessary tests, blood draws, respiratory support, x-rays, and things familiar with hospital stays.

Symptoms of her PTSD came on around age 6. I first thought it was a coincidence when she had an accident upon arriving at the hospital parking garage for routine care. Then a clear pattern emerged. Being developmentally disabled, her simple messages of “doctor,” “hurt,” and “scared” clued me into what she was thinking. A few years later, she simply, but powerfully, began refusing to get out of my vehicle at the hospital. The journey from the parking lot to the hospital was strenuous for both of us for years.

I was slow to admit how my daughter’s health scares impacted me. I noticed an intense ache in my arms and hands when I arrived at the hospital for her routine appointments. I came to realize I was holding the steering wheel with such a tight grip during the drive that I was causing myself pain. My body, it seemed, went into stress mode automatically from previous traumatic drives I made to the hospital while my child was being transported via an ambulance or helicopter. At home, I experienced nightmares centered around the hospital and ICU following her admissions. Anxiety would not relent even when health scares were over.

As I tried to understand what was happening with me, my son’s struggles emerged. Being the little brother, he spent his childhood tagging along to appointments and visiting hospital rooms. My husband and I tried to shield him from certain things, but the hospital has been an inevitable part of his life too.

The reality of his situation became known after visiting his sister in the hospital at age 9. Through tears, he confessed his fear of getting sick and ending up in the ICU. At school, he couldn’t concentrate. At home, nightmares had been torturing him. He nervously bit his nails and asked when we would return home from routine appointments. He was fearful we wouldn’t come home from scheduled appointments. I failed to realize how much it weighed upon him. His mental health could no longer be ignored.

Recognition of a problem and getting help for all of us was important. I needed medication for a period of time to manage the stress and anxiety I ignored for years. My son benefited from counseling to treat his anxiety. My daughter is a little more complex but understanding the anxiety behind her behaviors has made a crucial difference.

If you see similar patterns in your family, don’t ignore them. It is tempting to put off mental health issues, especially as medical ones seem more pressing. But don’t ignore the signs of PTSD in the entire family.

Seek help.
Ask questions.
It can get better.

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Timothy’s Burden: A Mom’s Song

Timothy’s Burden: A Mom’s Song

by | May 30, 2018 | Different Dream, In Parents, PTSD

Timothy’s Burden: A Mom’s Song

Today’s post comes from guest blogger, Sharon Cargin, who reflects upon a day when her stressed, caregiving heart needed to hear God speak, and He did.

I was feeling very restless one fall morning so I took a little trip to look at what my favorite greenhouse had out for autumn pots. I love autumn but I tend to struggle emotionally every fall. As I was driving, I got hit by a flashback. Old memories of 29 years ago when my son Tim was in the NICU in Omaha, very sick, flooded back. I images of entertaining 6 and 2-year-old sons Luke and Levi at the Ronald McDonald house poured into my mind. Mom and I–and my husband on the weekends–spent that lovely fall and into winter playing outside when we could as we anxiously awaited for Timothy to be well enough to go home. Sadly, those memories are very intertwined with stress.

Later the same day, I came across this diary entry:

3-26-00 I: finally gave in to shop for a bigger car seat for Tim. We are at the dreaded point where Tim is too big for a regular car seat, and he is too big for me to care for him alone. He is handicapped and I hate that so much. I did not want to find out we needed a handicapped car seat. It seems like failure to me.  I don’t know it just hurt so much. Monday night I was upset again and prayed for encouragement like someone calling. At that moment, the phone rang and it was my mom. I thought,” I don’t want to talk to my mom right now!”

The first thing she says is, “You made me cry.”
I said, “What are you talking about?”
She said,” By that song.”

I had given her a tape of a singing group that I thought she might like. The song was titled Timothy’s Burden.  It is about keeping the faith and walking in grace in hard times. Next, I picked up a book I was reading and the chapter was on handicaps and it had a prayer on not being set back by adverse circumstances!

I do not remember writing the diary entry, let alone why it was saved on my computer. I guess God wanted me to see it today. I looked up the song and listened to the lyrics.

I’m takin on Timothy’s burden
Not ashamed to wear these chains
If I suffer things uncertain
I’m gonna count my loss for gain
I’m takin on Timothy’s burden
Oh yes, I am, I’m takin on Timothy’s burden

Though I suffer things uncertain
I’ll keep the faith and fight the fight
I’m takin on Timothy’s burden
Oh yes, I am, I’m takin on Timothy’s burden

The song is based on 2 Timothy when Paul is in prison, soon to be executed. He admonishes Timothy to carry the gospel forth and urges him to be faithful with a very hard burden. The admonishment is also for believers today. Will we be faithful even as we suffer?

For me the song parallels my life of caring for Timothy all these years. On the outside our family appears to handle Tim’s care well. But don’t be fooled. It has been hard. We have suffered and struggled to keep the faith and fight the fight. We have struggled to count the loss of a normal life for Tim and for us as gain. Even though Tim’s prognosis is not good according to the doctors, we still hope and dream about a full life for Tim. We strive to see the positive. It is only by grace we serve Tim, and it is only by grace we serve the Lord. The same is true for all of us in every area we are called to serve.

On that fall day, I saw Jesus.
He ministered to me and my hurts.
He encouraged me.

May he encourage you as you cry out to Him with your burdens today. May you see God lift your burdens and give you hope as His plan unfolds. May you be confident God has a good plan. May you embrace the burden of carrying the gospel with His help and grace! May others see its hope as you carry your burdens while keeping the faith and fighting the fight!

And because I preach this Good News,
I am suffering and have been chained like a criminal.
But the word of God cannot be chained.
So, I am willing to endure anything
if it will bring salvation and eternal glory in Christ Jesus to those God has chosen.
2 Timothy 2:9-10

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Sharon (wearing white shirt above) is a wife, mother, mother-in-law, and grandmother. She has taught elementary school and homeschooled. Teaching and mentoring children and teens has been a joy in her life. Life was fairly normal for Sharon but pretty much blew up at the birth of her third son who was born 3 ½ months premature with quadriplegic cerebral palsy. Sharon has a passion to encourage others and share some of the lessons she has learned over the years.

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Resolving Past Trauma from the Inside Out Through Therapy

Resolving Past Trauma from the Inside Out Through Therapy

by | Dec 15, 2016 | Different Dream, In Parents, PTSD

Resolving Past Trauma from the Inside Out Through Therapy

Welcome to the final post in the Inside Out Special Needs Parenting series. The purpose of the series has been to equip parents to recognize and resolve their own past traumas so they can parent their children effectively. The previous article in this series, Resolving Past Trauma from the Inside Out Through Self-Understanding provided parents with resources they can use to process past traumas.

Sometimes, parents need a professional to help with accessing and resolving past trauma. Thankfully, several new treatments for trauma have recently been developed and tested and have been proven to be very effective. Effective treatments have one thing in common. They rely on more than talk to access and process past events. Here are a few promising therapies linked to more information about each one.

  1. Somatic Experiencing
  2. Guided Imagery, Creative Visualization, and Hypnosis
  3. Neurofeedback
  4. Eye Movement Desensitization and Reprocessing

Each of these methods is explained in greater detail in Childhood Disrupted: How Your Biography Becomes Your Biology and How You Can Heal by Donna Jackshon Nakazawa. It’s an informative and interesting read. Another book that provides the most thorough summary of the history of trauma treatment and reviews each treatment method in great detail is The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk. And here’s a final reminder about the book that led to the inside out parenting series–Parenting from the Inside Out: How a Deeper Self-Understanding Can Help You Raise Children Who Thrive by Daniel Seigel and Mary Hartzell.

Checking out these resources and resolving past trauma through therapy may seem like a daunting task. But remember, your primary motivation for doing the work is to raise kids who thrive. But as you work to make life better for them, the self-understanding you gain will make your life better, too.

Inside Out Special Needs Parenting, Part 1
Inside Out Special Needs Parenting, Part 2
Inside Out Special Needs Parenting, Part 3
Inside Out Special Needs Parenting, Part 4
Inside Out Special Needs Parenting, Part 5
Inside Out Special Needs Parenting, Part 6
Inside Out Special Needs Parenting, Part 7
Inside Out Special Needs Parenting, Part 8

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 the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. 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 at Amazon.

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Inside Out Special Needs Parenting: Implicit and Explicit Memory

Inside Out Special Needs Parenting: Implicit and Explicit Memory

by | Jul 14, 2016 | Different Dream, In Parents, PTSD

Inside Out Special Needs Parenting: Implicit and Explicit Memory

This Different Dream post is the fourth installment in a series about special needs parenting from the inside out. The series is the result of what I learned while researching Does My Child Have PTSD? What To Do When Your Child Is Hurting from the Inside Out.

Today, we’re taking a look at the two kinds of memories present in all of us: implicit and explicit. The day I learned about implicit and explicit memories was an “aha” moments for me. Once you understand the basics of implicit and explicit memories, you’ll see why some of the things your kids say and do push your buttons and lead you down the low road of special needs parenting.

Implicit Memory and Special Needs Parenting

Have you ever heard someone state that children don’t remember anything that happens to them from birth to about age 3? My husband and I were told that often during the hospital stays and surgeries that were part of our son’s life for about four years, starting the day he was born. That was in 1982, and since then much has been learned about the true nature of memory in young children.

The truth is that we all remember what happened in the first few years of life. Child psychiatrist Daniel Siegel explains how this happens Parenting from the Inside Out: How a Deeper Self-Understanding Can Help You Raise Children Who Thrive.

Siegel describes implicit memory as “a form of nonverbal memory that is present at birth and continues throughout the life span.” People aren’t aware that they are recalling something from the past because the events aren’t remembered as events but as emotions, bodily sensations, and perceptions.

Explicit Memory and Special Needs Parenting

Explicit memory begins when a part of the brain called the hippocampus begins to create new circuits sometime after kids turn one. Explicit memory has two components. The first is factual memory, which develops around a year and a half. Young children use it to record names of things like flower, cow, and kitty. The second component of explicit memory is “autobiographical memory, which begins to develop sometime after the second birthday.” When we talk about our earliest memories, these are the ones that come to mind–the first few frames of the movie that is the story of our lives.

Implicit Memories Can Mess with Your Head

An explanation of implicit and explicit memory reveals why people sometimes take the low road and have no idea why. Because we’re all nonverbal until around age three—about the same time explicit memory kicks in—most of our early memories are stored as images, smells, and sounds. Including the frightening, wordless ones buried inside us. Once triggered by situations involving our kids and the actions of our children, even the best moms and dads can flip their lids and land on the special needs parenting low road…and deeply regret those behaviors later.

The next post in this series will look at the Intensive Trauma Response (ITR) model, which explains what goes on inside the brain when frightening memories are triggered, in people of all ages. Until then, you can learn more about implicit and explicit memory in Daniel Siegel explains how this happens in Parenting from the Inside Out: How a Deeper Self-Understanding Can Help You Raise Children Who Thrive by Daniel Siegel and Does My Child Have PTSD? What To Do When Your Child Is Hurting from the Inside Out by Jolene Philo.

Your Insights?

Did today’s Inside Out Special Needs Parenting post result in any “aha” moments for you? Feel free to share them in the comment box.

Inside Out Special Needs Parenting, Part 1
Inside Out Special Needs Parenting, Part 2
Inside Out Special Needs Parenting, Part 3

Do you like what you see at jolenephilo.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 the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. 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 at Amazon.

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Does My Child Have PTSD? Do I Have PTSD?

Does My Child Have PTSD? Do I Have PTSD?

by | Jun 22, 2016 | Different Dream, In Parents, PTSD

Does My Child Have PTSD? Do I Have PTSD?

A strange thing happened a few months back at the Accessibility Summit in McClean, Virginia. On Friday afternoon, I was sitting in the Exhibit Hall at my book table. A copy of my newest book, Does My Child Have PTSD? What To Do When Your Child Is Hurting from the Inside Out was displayed in a place of honor. A woman paused, picked up the book, and read the title. “Does my child have PTSD?” She looked up and said, “Probably he does. But I think I it too. Where’s the book about that?” “Does your child have special needs?” I asked. Her eyes, haunted and dull, met mine and she and poured out her story. A son with autism in elementary school. A failed marriage to an abusive husband. 24/7 care of her little boy except when he’s with his dad. Battles with the school district about how to meet her son’s needs. The mom’s mounting stress exacerbated by guilt about not resting in Jesus like she wishes she could. The strange thing wasn’t her particular story. The strange thing was that for the remainder of the conference–Friday evening and all day Saturday–parent after parent paused at the table where I sat. They picked up the book and responded to the title in the same way with the same haunted, dull look in their eyes. “My child has PTSD, and I think I do, too.” Their responses alarmed me. Why? Because my research while writing Does My Child Have PTSD? unearthed several research studies that show the importance of parents safeguarding their own mental health. Numerous research show that the children of parents with mental illness are at greater risk of developing PTSD after traumatic events. Others show that pregnant women with PTSD are likely to pass along a genetic marker for PTSD to their unborn children. Yet the Amazon search I conducted after returning home resulted in some disturbing findings. There were numerous books in the general market for medical professionals about dealing with caregiver stress, chronic stress, and compassion fatigue. There were books for teachers about the same issues. General market and Christian market books abounded in for caregivers of adult spouses and aging parents and the stress they experience. But there weren’t any general market books devoted to the caregiving stress parents experience while raising children with special needs. And there were none in the Christian market either. How can that be, I wondered, when writers of both the Old and New Testament call believers to care for widows and orphans, the sick and the blind, the poor and the outcasts? How can we be so far off the mark? Why isn’t the church confronting issues of mental health instead of ignoring them? Then I thought about the Mental Health and the Church conference being sponsored by Saddleback church next October. I thought about Key Ministry, an non-denominational organization that ministers to families of kids with mental health issues. And I remembered a consensus reached by a gathering of special needs ministry leaders that mental health will be the next area of need God is calling his church to address. The church is beginning to grapple with this issue. But much remains to be done. For me and I hope for some of you, mental illness ministry begins with supporting stressed and traumatized parents of kids with special needs. The prospect is frightening because I don’t know how or where to start.
But God does. And he will guide us each step of the way when our eyes are fixed upon him. When our prays are offered in dependence and submission to him. When we confess our neglect and ignorance about the trauma and stress that oppresses caregiving parents. When our hearts are broken, and we weep for the burdens they bear. When we ask him to make us the hands and feet of Christ to guide struggling, guilt-ridden parents to his rest in this world and the next.
Lord, open the eyes of your people to the needs of struggling parents. Give us your wisdom and power to come alongside parents overwhelmed by the stress and trauma of caregiving. Show us what they need and equip us to meet them. Let your Spirit be strong in us, so we are diminished and Christ is glorified. Amen. 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 the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. 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 at Amazon.

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