8 Truths about PTSD in Parents of Kids with Special Needs

8 Truths about PTSD in Parents of Kids with Special Needs

by | Apr 24, 2015 | Different Dream, In Parents, PTSD

8 Truths about PTSD in Parents of Kids with Special Needs

Welcome to Different Dream’s ongoing series about PTSD in parents of kids with special needs. (You’ll find links to the rest of the series at the bottom of the page.) Today’s guest post comes from Barb Dittrich, parent of a child with hemophilia and founder of Snappin’ Ministries. She’s here to share 8 truths she’s learned about PTSD as the parent of a child with special needs. See if any of them ring true for you.

8 Truths about PTSD in Parents of Kids with Special Needs

Most of us have heard the expression “Physician, heal thyself.” While there is no similar phrase for parents, perhaps we should be embracing the wisdom of “Caregiver, care also for thyself.” I often speak of having my focus so much in caring for my children that I don’t lift my head enough to acknowledge my own needs. In fewer ways is this true than in dealing with my parental PTSD. Because of the subsequent traumas that ensued, the initial shock of having my son diagnosed with severe hemophilia the day after he was born never seems to fade. Each year at his birthday, I can feel the tingle of my face as if it were yesterday that the nurse erroneously exposed the results of our son’s cord blood test. April 12, 2000 will live in vivid technicolor in my mind forever. I can hear our pediatrician’s voice confirming our worst fears, see the melting ice wrapped around his little heel as he continued oozing from the prick of a bilirubin test, and feel myself sit in the rocking chair of the ICU with him as he received his first infusion of clotting factor. Fast forward over the years to his first hospitalization for a serious bleeding episode, and I can still smell that unmistakable, horrific, pungent odor of someone who is bleeding internally. I can see myself in a panic in my kitchen, crying on the phone to the doctor, who wouldn’t admit him overnight for something so frighteningly dangerous. I can see him sandwiched between the machines as I held his hand, trying to keep him still by introducing him to Sponge Bob for the first time on video, over an hour ticking by to get the images for his diverticulogram, praying that they might find the life-threatening source of the bleeding. Yet, the emotional horror that can never be extracted from my heart was his screaming in pain as I held him in restraint for his twelfth intravenous needle jab in less than 24 hours, “Dad! Help me! Make them stop! Oh, my God! Why aren’t you helping me? You’re my dad! You’re supposed to be helping me!” I can still feel the hot tears helplessly draining down my face as I did what needed to be done. My heart! How can I ever be expected to be the same again? Hemophilia is the type of chronic illness that can make life feel like you are continually walking through a mine field. You never know when a bleed might occur. The things you might think would be a problem, like having a tooth pulled, end without incident. Another day, your child suddenly gets into the car after school feeling pain in their upper thigh and is hospitalized that evening with a life-threatening hip bleed. Having walked through all of these things, here are some truths I can share with you about realizing that not only my son, but I too live with medically triggered PTSD:
  1. Your child’s trauma is separate from your trauma. While your child definitely deals with life-changing crises, your trauma is separate and distinct from your child’s. For example, while my child’s trauma is feeling the attack and powerlessness of being restrained to be jabbed with a needle, my trauma is restraining him, hearing him scream out in pain, and being unable to stop it. My trauma is seeing the pools of frank blood on our kitchen floor, covering multiple surfaces in our bathroom, or saturating bed linens and clothes.
  2. Prayer and Scripture are critical, but don’t forget that God moves through mental health professionals too. From little on, I taught my son to do deep breathing and memorize verses like, “Be anxious for nothing,” (Philippians 4:6) or “I can do all things through Christ who strengthens me.” (Philippians 4:13) We would pray these through before we infused as a way to calm down. That is a good thing. However, as the number of crises increased, it became apparent we needed more help. Sadly, the Church (including us, its members) can forget that in addition to working through prayer and the Word, God also works through people. This includes medical and therapeutic professionals. I have been blessed to have worked with a number of competent, helpful psychotherapists, psychologists, and psychiatrists over the years.
  3. Your trauma will be triggered by things you expect and things you don’t expect. You will probably not be surprised to hear that writing this narrative for you opened my grief afresh. However, you may find yourself startled as I did that first time I discovered merely seeing the school’s phone number on Caller ID caused my heart to race with noticeable intensity. I had always downplayed the seriousness of what I faced, thinking that I needed to toughen up. Yet, something as simple as a phone call or a smell, or a sound, can propel a parent like me into the heart of that trauma once again in fractions of a second.
  4. Others may see it before you do. Because our children need us to be strong and activated, we often don’t see what these traumatic experiences have done to us. I first came to realize that I was facing PTSD every bit as much as my son, when a friend of mine who is a psychotherapist mentioned it. I had just shared with her and the rest of our Moms In Touch group my concerns regarding my son’s trauma at our weekly gathering. After listening to my prayer requests she said, “My goodness! You probably have PTSD too after everything you’ve been through!” Her shared epiphany validated the subtle signs fighting for recognition in my own life.
  5. It is not unusual to be re-traumatized. When we have a child who faces a lifetime diagnosis, traumatic experiences can and do reoccur. Each new treatment or hospitalization can constitute another emotionally jarring experience. Because this can be a distinct possibility with a chronic diagnosis, it is critical to have a preferred professional to whom you can turn at a moment’s notice. Even if you are feeling well and strong, a sudden episode with your child can make psychological help necessary in short order.
  6. This is not a quick fix. Be patient and kind with yourself. Trauma leaves deep, life-changing wounds. It is worth the time spent in therapy to heal your emotions and mental health. There may be times where you feel worse before you feel better, because you are exposing wounds that have been covered and buried deep out of a need to cope in the short-term. Don’t give up in the sorrow of healing. Just as a plant needs to be watered before it can grow, our tears need to be released to move forward in hope.
  7. There are a variety of options for treatment. Our son initially saw a child trauma specialist. She first used EMDR (Eye Movement Desensitization and Reprocessing) with him. Guided imagery was also used with this therapist. I engaged in hypnosis, progressive relaxation and other psychotherapy with this same professional. Ultimately, our son moved on to receive CBT (Cognitive Behavior Therapy) through a psychologist at our children’s hospital. Do your homework on these methodologies to see which you might be most comfortable with.
  8. There is life after trauma. While the real life terror of living through some of these experiences with our children can make us feel shaken and spun around at times, life can still be good. If you are willing to bravely address this tough issue in yourself and/or your child, the future can be bright. You need not live life in a perpetual state of tension, waiting for the other shoe to drop. You can begin to develop a joy for life and a positive outlook after addressing symptoms. I have been told in the past that PTSD never completely goes away. Not being an expert, I can’t confirm that is true. However, I can tell you that things can vastly improve so that trauma no longer holds you and your family hostage.
“Caregiver, care also for thyself.” It isn’t always easy. We must be very intentional about it. Still, if we acknowledge our need as parents and address this vulnerability with commitment, we will find ourselves renewed and refortified the way God intends.

What Truths Have You Learned about PTSD in Parents of Kids with Special Needs?

Have you collected some truths about PTSD in parents while raising your child? Please share them in the comment box. PTSD in Parents of Kids with Special Needs  
Part 1: Special Needs Parents and PTSD Results Part 2: Special Needs Parents and PTSD–What About You Mom?
Part 3: PTSD in Parents–6 Ways to Deal with Adrenal Fatigue
Part 4: 8 Truths about PTSD in Parents of Kids with Special Needs Part 5: PTSD in Parents–Moving from Negative to Positive
Part 6: PTSD and Special Needs Parents: 5 Ways to Prepare for Healing Part 7: PTSD in Parents of Kids with Special Needs: Visualization as a Coping Tool Part 8: Newborns Feel Pain: The Headline that Almost Triggered My PTSD
Part 9: Why Special Needs Parents with PTSD Should Watch Inside Out Part 10: Why Kids with PTSD Need Mentally Healthy Parents Part 11: PTSD and Special Needs Parents: Calling it Like It Is
Part 12: The Unseen Battle with PTSD
Part 13: Medically-Induced PTSD
  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.

By

The mother of three children, all of whom have a variety of chronic illnesses or special needs, Barbara Dittrich founded Snappin’ Ministries (Special Needs Parents Network) in 2002 and currently serves as its Executive Director.  The organization she leads was one of three finalists for World Magazine’s Hope Award for Effective Compassion in October of 2009, in conjunction with the American Bible Society.  With a unique vision for serving parents of children with chronic illness, disability, or special needs, she has led the SNAPPIN’ MINISTRIES team in developing an innovative parent mentor curriculum.  She lives with her husband of 20+ years in Wisconsin, writes, and speaks nationwide.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

PTSD in Parents: 6 Ways to Deal with Adrenal Fatigue

PTSD in Parents: 6 Ways to Deal with Adrenal Fatigue

by | Apr 17, 2015 | Different Dream, In Parents, PTSD

PTSD in Parents: 6 Ways to Deal with Adrenal Fatigue

Welcome to the third post in Different Dream series about PTSD in parents of kids with special needs. Today, guest blogger and mom Rachel Olstad is here to tell her story of coming to terms with her PTSD that developed after the birth of 2 of her children.

PTSD in Parents: 6 Ways to Deal with Adrenal Fatigue

I was 25 years old when my first child was conceived.
Trips to the teaching hospital, prenatal ultrasounds galore, packs of white coats.
Bad news.
Gloomy news.
Dire news. Not viable. Terminate. Abort.
Smart thing to do.
If he lives, it will be in a vegetative state.
We got to squeeze his little hand before they rushed a very blue baby off to a 12-hour surgery.

3 weeks and 3 surgeries later, we took home a medically fragile baby boy.
In the hospital more than home his first several years.
Around 30 some surgeries.
Oxygen. Heart monitor. IVs. 911 on speed dial.
First name basis with first responders.
Turning blue.
Vomiting. Aspirations. Pneumonia.
Ambulances and a medic flight.
6 hours of sleep a day in 15-minute snippets.
He’s coding.

Adrenaline rush, adrenaline rush, adrenaline rush.

I was young. I was strong. I was a Christian. I handled it all with aplomb. After years of living in crises, our son stabilized–mostly–and we learned to navigate our new normal of being parents of a child with disabilities. We had another son, then a daughter.

Baby Girl is in NICU.

Hibiclens. Nail scrubs. Gowning up. Pumping breast milk.
The smells.
The sounds.
What was happening to me?
My mental state was so concerning to the nurses that they asked if I wanted psychiatric help.

Fast forward a few years. Our son’s kidney shuts down. He goes septic and almost dies. Twice. What’s happening to me? I can’t even walk into the hospital anymore without throwing up. I can’t quit crying. I’m obsessing over healthcare routines. Irrational thoughts won’t stop going through my head, and my gastrointestinal system responds in immediate ways.

Insomnia. Anxiety.

I cry out to God for help constantly.
I dig into my Bible.
Why won’t God send relief?

Mornings I can function well enough to tend to my kids’ needs. I set dinner ingredients on the counter, knowing I won’t be able to think clearly enough by evening to put a meal together. My sainted husband regularly covers for me. I sit on the couch solving endless crosswords to keep my mind occupied on something else than those horrendous, irrational thoughts.

I know I need help.

I visit a practitioner specializing in stress and hormones.
With advice stemming from a naturopathic philosophy, I make progress back to the land of the living.
Am I cured?
No.

My daughter has a case of unrepairable supraventricular tachycardia that has resulted in ambulance trips and unsuccessful ablations. My oldest son still is disabled. I live on the edge with an undercurrent of constant anxiety.

Adrenaline rushes occur every time someone sneezes.

But I’m much better – sometimes thriving, sometimes struggling. How do I keep going day after day? Here are my top tips for moms dealing with PTSD or adrenal fatigue:

  1. Psalms for the Anxious: In the middle of one anxious night, I googled and found this list. I have one Bible that’s yellow-highlighted for those anxiety-filled moments, believing in God’s sovereignty and that ultimately, I am not responsible for how many days my kids will spend on earth.
  2. Quit the Caffeine Fix: My pot of coffee each day was too much. I’ve learned to be kinder to my body, cleaning up my diet, coffee being my particular poison. An occasional massage works wonders instead.
  3. Seek Professional Help: For me, it was seeking naturopathic and nutritional guidance. For others, it may be necessary to see a psychiatrist. If you have thoughts about harming yourself or your children, tell someone right now. Get immediate help.
  4. Find a Support Group: I belong to a special needs moms group. They get me. When I’m particularly struggling, I shoot a message, knowing they will lift me up to our heavenly Father. The peace I feel afterwards is amazing.
  5. Share the Responsibility: During emergencies my hubby does the ambulance rides if he’s available. I still love and care about my kids; I’m just relinquishing control-freak tendencies and accepting help for my own well-being.
  6. Turn Away from Negativity: If a TV show triggers anxiety, turn it off. Don’t finish that book if it’s making your stomach knot. Instead, watch Tim Hawkins on YouTube or tell your kids a joke. Force yourself to leave them and go see a play. I am always surprised at how much I enjoy myself once I’m removed from the immediacy of my situation.

While I hate the way PTSD makes me feel, believe it or not, I am grateful for it. Once a pull-yourself-up-by-the-bootstraps kind of girl, I now know what it is to fully rely on God in my weakness, and I can now comfort those who journey behind me.

Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. Psalm 71:20 (NIV)

What About You?

Do you see elements of your story in Rachel’s? Do you wonder if you, too, could have PTSD? Leave your thoughts or questions in the comment box.

Part 1: Special Needs Parents and PTSD Results
Part 2: Special Needs Parents and PTSD–What About You Mom?
Part 3: PTSD in Parents–6 Ways to Deal with Adrenal Fatigue
Part 4: 8 Truths about PTSD in Parents of Kids with Special Needs
Part 5: PTSD in Parents–Moving from Negative to Positive
Part 6: PTSD and Special Needs Parents: 5 Ways to Prepare for Healing
Part 7: PTSD in Parents of Kids with Special Needs: Visualization as a Coping Tool
Part 8: Newborns Feel Pain: The Headline that Almost Triggered My PTSD

Part 9: Why Special Needs Parents with PTSD Should Watch Inside Out
Part 10: Why Kids with PTSD Need Mentally Healthy Parents
Part 11: PTSD and Special Needs Parents: Calling it Like It Is
Part 12: The Unseen Battle with PTSD
Part 13: Medically-Induced PTSD

 

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.

By

Rachel Olstad began her journey into the world of disabilities in 1990 when her oldest child was born with spina bifida and subsequently diagnosed with autism. She volunteers with Joni and Friends Southern Oregon, helping to meet the physical, emotional and spiritual needs of individuals and families affected by disability and encouraging churches to include all people. She was a contributing writer for both Special Needs Smart Pages and Nursery Smart Pages (Gospel Light), has been published in the Journal for Religion, Disabilities & Health, and was an assistant editor on Beyond Suffering: A Christian View on Disability Ministry. (Christian Institute on Disability)

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

Special Needs Parents and PTSD: What About You, Mom?

Special Needs Parents and PTSD: What About You, Mom?

by | Apr 10, 2015 | Different Dream, In Parents, PTSD

Special Needs Parents and PTSD: What About You, Mom?

PTSD and parents. I don’t want those two words to go together in the same sentence. Ever. But the truth is that PTSD and parents (especially the special needs variety)  spend way too time in one another’s company. That’s why Different Dream launched its series about special needs parents and PTSD last week with a review of what its recent parent survey shows. Today’s post comes from Jolene Philo, who recently came to grips with the trauma surrounding the birth of her first child in 1982.

What About You, Mom?

A few hours after our first child’s birth in 1982, he was life-flighted to a hospital 750 miles away for life-saving emergency surgery. For the next 4 years, my mother hen instincts were absorbed in caring for my little chick. Life felt like a revolving door as my husband and I watched him go in and out of the doctor’s office, in and out of the hospital, in and out of surgery way. That revolving door left very little time for self-examination or working through the trauma I had experienced after his birth.

So I shut the door to my emotions and kept them safely under lock and key for years–even decades–after our son’s health stabilized. Those emotions remained stuffed away until 2008 when our son, then 26, was treated for PTSD caused by all the early, invasive medical trauma he had experienced.

I was sitting in the trauma clinic’s waiting room minding my own business when one of the therapists stopped by to visit about our son’s progress. After confirming that our boy was progressing well, the therapist looked me in the eye and asked, “What about you, Mom?”

I had no idea why he was asking the question. “I’m fine,” I replied, puzzled.

He raised a quizzical eyebrow. “Is that so?”

For several years I ignored his question whenever it niggled in my brain. But then last fall, something happened to someone I love dearly, and that event unlocked the door to my emotions. Long hidden emotions came tumbling out. Once again I felt as alone and weak and helpless as the day the doctor took my newborn baby away. I felt stuck in the past, unable to move beyond the constant sense of worry and loss surrounding me.

I described my feelings to my sister, a mental health counselor. “You went through a lot when your baby was born,” she confirmed. “And you never processed your emotions. I think some Eye Movement Desensitizing and Reprocessing (EMDR) therapy might help you.” She did some online research and sent contact information for several therapists in our area and advice about dealing with our insurance. A few weeks later, I scheduled my first of several weekly appointments with a compassionate and skilled therapist. A few months later, she said we were done.

By then we’d become friends. I was sad to say good-bye to her, but I knew she was right. I no longer felt stuck. I could think about the early days and years of our son’s life and maintain an emotional distance that kept me from getting sucked back into them. Leaving her office for the last time, I resolved to share my experience with other parents of kids with special needs so they can find help and process their emotions soon after soon after they are traumatized.

If you think special needs parents and PTSD are living side by side in your life, I urge you to seek treatment. Follow these steps to find a therapist:

  • Ask your insurance company for a list of mental health therapists in their network.
  • Identify therapists on the list who have specialized trauma training.
  • Check them out on the internet.
  • Call their offices and ask them about their trauma training and therapy techniques.
  • Make an appointment with a therapist that best matches your needs.
  • Go to a few appointments. If you see red flags or don’t feel comfortable find a different therapist. But if you see progress, keep going until you’ve worked through your emotions.
So What About You, Mom? That’s my story, and that’s my advice. But before signing off, let me ask you a few simple questions: What about you, Mom? What about you, Dad? What about you? What about you?
Part 1: Special Needs Parents and PTSD Results Part 2: Special Needs Parents and PTSD–What About You Mom?
Part 3: PTSD in Parents–6 Ways to Deal with Adrenal Fatigue
Part 4: 8 Truths about PTSD in Parents of Kids with Special Needs Part 5: PTSD in Parents–Moving from Negative to Positive
Part 6: PTSD and Special Needs Parents: 5 Ways to Prepare for Healing Part 7: PTSD in Parents of Kids with Special Needs: Visualization as a Coping Tool Part 8: Newborns Feel Pain: The Headline that Almost Triggered My PTSD
Part 9: Why Special Needs Parents with PTSD Should Watch Inside Out Part 10: Why Kids with PTSD Need Mentally Healthy Parents Part 11: PTSD and Special Needs Parents: Calling it Like It Is
Part 12: The Unseen Battle with PTSD
Part 13: Medically-Induced PTSD
 
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.

By

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.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

Special Needs Parents and PTSD Survey Results

Special Needs Parents and PTSD Survey Results

by | Apr 3, 2015 | Different Dream, In Parents, PTSD

Special Needs Parents and PTSD Survey Results

About a month ago, Different Dream first posted a survey about special needs parents and PTSD. Since then, and despite all sorts of tech issues that made this site hard to find, 49 people completed the survey. They took the time to tell their stories–many of them heartbreaking–because they want to raise awareness about the issue.

This post is the first in a series, based on the survey results, about special needs parents and PTSD. In future posts, you’ll hear from some of the people who participated in the survey–with their permission, of course. But for today, the series examines the results of the study.

Question #1

Do you think you have PTSD that was caused by your child’s special needs? All 49 participants answered this question. 90% said yes. 10% said no.

Question #2

Have you been diagnosed by a mental health professional or doctor with PTSD? Again, all participants answered this question. 30% answered yes, they have been diagnosed with PTSD by a mental health care professional. 70% said no.

Question #3

Have you received professional treatment for PTSD? Of the 47 people who answered this question, 30% said they have received professional treatment for PTSD, but 70% said they have not.

Question #4

Did professional treatment help you cope with your traumatic memories? 36 people answered this question, even though only 14 said they have received professional treatment. 30% (16 people) said treatment helped them cope. 70% (20 people) said it did not. Hopefully, we can presume those who actually received treatment were the ones who responded positively.

Question #5

When did your initial traumatic experience occur?

Here are the comments parents left in the box:

  • Post adoption
  • During hospitalization
  • Right after she was born with her first diagnosis of cancer at 6 weeks of age.
  • At birth
  • Birth
  • At birth with first TEF baby and in NICU with second TEF baby
  • Yes during birth
  • Before birth
  • After birth
  • Began when we adopted her from Russia.
  • Premature birth, NICU
  • After diagnosis of stroke when she was 8 months of age
  • About a year after my first son was born. The first year is all about survival. When the dust starts to settle everything hit me like a brick. I managed to find a balance again. We found out we were pregnant with our second little boy. 24 weeks into pregnancy I found out he two would have the same disorder as his brother. Moments later the brick hit me again. It’s been over a year since the diagnoses and he is 8.5 months old. I’m still struggling.
  • At birth and in the NICU for 6 weeks. (preemie, born 10 weeks early)
  • I am raising my grandson, who is my son’s son, but due to circumstances at that time, he was not around. I was stunned that the mother wanted to give him up, so that was my first moment of panic. Then slowly realizing something was “not right” and thinking perhaps it was a connection/bond he was missing with his mother, I finally took him to the doctor where I left completely stunned by the diagnosis. Our lives took a sudden huge turn. I have learned a lot about PTSD. I know I probably need to take time and deal with my own, but I’m so involved in the caregiving process on so many levels.
  • Before birth
  • At birth, his first year spent mostly in hospital, his about 30 surgeries, for about the 4 years he stopped breathing about 6 times a day, the 2 times he almost died of kidney failure. Then my daughter started having supraventricular tachycardia episodes and mental health issues.
  • When my son was admitted to the hospital at 5 days old
  • With in the first month of my son’s birth
  • diagnoses before birth
  • NICU
  • When my child was 5 weeks old
  • At birth and many subsequent scary near losses
  • Diagnosis and afterwards
  • Birth, NICU, fighting for him during his first two years, heart surgery, and then bleeding
  • I’m not sure if I can pinpoint the first experience. It could be the emergency C-section required at birth, the multiple ear infections as a baby, the increasing symptoms of autism in the first 2 years, the diagnosis at 27 months, or when it all finally hit me 3 years after diagnosis. I’m not positive I HAVE PTSD, but I do have major anxiety and clinical depression.
  • In NICU
  • At about age 2 when his behavior and CP were first diagnosed
  • birth
  • at diagnosis
  • At diagnosis (newborn) and multiple times throughout growing years
  • About three years after he was born, after the the calm after the storm
  • At diagnosis
  • Both at the time of my sons near drowning accident and once again last year when he stop breathing and had to be rushed to the hospital in an ambulance
  • During his traumatic birth
  • At diagnosis
  • I believe the sudden death of my first husband had barely shown signs of what it did to me, then after remarrying our 16 month old was diagnosed with a brain tumor, after 18 visits to emerge starting at 16 weeks we begged for an MRI
  • During NICU but didn’t get help until probably a year later
  • When we met him in China (adoption)
  • NICU after his adoption
  • Before birth of my first child. Reactivated immediately after birth of my second (HIE) once she was taken away
  • I would guess at birth, but maybe just along the way, sooo many things!
  • Around diagnosis, at his first seizure
  • Before child’s birth and then continued at her birth, NICU admission, heart failure, and chronic medical problems that ensued. It peaked when medical professionals accused us of making our child ill and reported us to state child protective services. Thankfully, their claims were quickly thrown out as invalid, but it amplified the PTSD.
  • Before birth, NICU and subsequent surgeries and diagnosis
  • At birth

Question #6

What is your child’s special needs diagnosis? The diagnosis ran the gamut from conditions caused by birth trauma, congenital abnormalities that required medical treatment or surgery at birth and a NICU stay, autism, epilepsy, developmental delays, RAD, and mental illness.

Question #7

Are you interested in contributing a blog post to DifferentDream.com’s upcoming series about special needs parents and PTSD? Of the 47 people who answered this question, 25 said yes. If you’re one of those people, thank you for your willingness to share your story. And watch your inbox for an email very soon about what to do next.

Did the Survey Results Surprise You?

Here’s what surprised me about these results….the number of parents dealing with PTSD for a long period of time without treatment or support. This makes me very sad because treatment is available and effective. So in addition to the stories survey participants will be contributing to this series, considerable time will be devoted to effective treatments and how to locate them.

So, did the survey results blow you away? Leave a comment about your reaction in the box below. Thanks!

Part 1: Special Needs Parents and PTSD Results
Part 2: Special Needs Parents and PTSD–What About You Mom?
Part 3: PTSD in Parents–6 Ways to Deal with Adrenal Fatigue
Part 4: 8 Truths about PTSD in Parents of Kids with Special Needs
Part 5: PTSD in Parents–Moving from Negative to Positive
Part 6: PTSD and Special Needs Parents: 5 Ways to Prepare for Healing
Part 7: PTSD in Parents of Kids with Special Needs: Visualization as a Coping Tool
Part 8: Newborns Feel Pain: The Headline that Almost Triggered My PTSD

Part 9: Why Special Needs Parents with PTSD Should Watch Inside Out
Part 10: Why Kids with PTSD Need Mentally Healthy Parents
Part 11: PTSD and Special Needs Parents: Calling it Like It Is
Part 12: The Unseen Battle with PTSD
Part 13: Medically-Induced PTSD

 
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.

By

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.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

4 Childhood Trauma and PTSD Updates

4 Childhood Trauma and PTSD Updates

by | Feb 23, 2015 | Advocacy and Research, Different Dream, PTSD

4 Childhood Trauma and PTSD Updates

Childhood trauma and PTSD have been in the news frequently of late. That’s good news after years of trying to raise awareness about this form of mental illness. For this author, whose book about childhood trauma and PTSD will be released later in 2015, it’s good news indeed. It’s even better news for parents raising traumatized children. This post highlights four advances in the field that have been in the news during the past several months.

Anxiety Disorders, Childhood Trauma, and PTSD

Anxiety disorders are often closely tied to childhood trauma and PTSD. This article at Mom Junction describes 5 types of childhood anxiety. Then, it offers 9 practical ways to deal with anxiety issues in kids. If your child’s trauma is manifested by anxiety, you will want to read 5 Types and 9 Ways to Deal with Anxiety in your Kid.

How Teachers Can Help Kids Impacted by Childhood Trauma and PTSD

Next up is a short article at The Atlantic’s website. The article suggests five strategies teachers can use to support traumatized children. Why do teachers need to know these strategies? Because, the article says, 1/4 of students have experienced a traumatic event. So you might want to check out How Teachers Help Students Who’ve Survived Trauma and then pass it on to your child’s teacher. Even if your children haven’t been traumatized, many of their classmates are.

Childhood Trauma and PTSD Impacts More than One in Four Kids

If you find it hard to believe that 1 in 4 children are impacted by childhood trauma and PTSD, then prepare yourself for an even bigger shock. New research conducted by the Johns Hopkins Bloomberg School of Public Health in Baltimore finds that almost half of children in the United States suffer from traumatic stress. Still skeptical? Then read this Health Day press release to get the whole story.

Preventing Childhood Trauma and PTSD in Medically Fragile Children

And finally, a new program at Children’s Hospital of Orange County is being used to prevent or reduce childhood trauma and PTSD in hospitalized children. The hospital has built an Infusionarium. One wall of the Infusionarium, where kids play video games and check their social media accounts while receiving chemo or other infusions, is a huge aquarium. To get the whole story, A Hub for Social Media and Video Games Can Reduce PTSD in Kids Enduring Chemo Treatment, explains the Infusionarium very well.

Other Childhood Trauma and PTSD News?

Have you read other stories about childhood trauma and PTSD lately? Heard about some breakthroughs? Please tell about them in the comment box. Thanks!

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.

By

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.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

Stress, PTSD, and Parents of Kids with Special Needs

Stress, PTSD, and Parents of Kids with Special Needs

by | Feb 20, 2015 | Different Dream, In Parents, PTSD

Stress, PTSD, and Parents of Kids with Special Needs

 Photo Credit: satit_srihin at www.freedigitalphotos.net

Recent studies have shown that parents of kids with special needs are at a greater risk of developing Post Traumatic Stress Disorder (PTSD) than are parents of typical kids. Over the next weeks, Different Dream will address the subject of PTSD and parents of kids with special needs. In today’s post guest blogger, Dr. Liz Matheis offers information and advice to parents who suspect they have PTSD about how to manage day to day.

Stress, PTSD and Parents of Kids with Special Needs

As a professional, the initial phone call comes with a focus on the child with Autism Spectrum Disorder (ASD). However, I have often asked during our first appointment, “How are you, as the parent, doing?” Several parents have looked at me somewhat crooked and have said either, “Fine,” or “No one has ever asked me how I’m doing.” As a parent of a child with ASD, the process of gaining a diagnosis and then living and treating can be overwhelming and often traumatizing. With that said, it is safe to say that many parents of children with ASD are suffering from Post Traumatic Stress Disorder (PTSD).

What Is PTSD and What Are the Signs?

PTSD is an anxiety-based disorder that occurs when a person has experienced trauma, witnessed trauma, has been exposed to the details of a traumatic event experienced by another person, or by repeated exposure to trauma, such as a trauma professional. Signs and symptoms include flashbacks, nightmares, inability to concentrate, prolonged distress, and physiological reactivity (that is jumpy or hyper-vigilant).

How Does a Parent Develop PTSD?

For the parent of a child with ASD, the initial trauma comes from realizing that ‘something isn’t right’ with her child, researching, and ultimately gaining the diagnosis. This trauma is perpetuated when a parent begins to mourn and grieve the loss of the child that he thought he would have. The next phase is gaining treatment and not being entirely sure how it will work and what the outcome will be. Then, adolescence hits and some children with ASD become aggressive. Some kids have been aggressive all along. As a result, parents are left defending themselves, hiding bruises, and staying at home so that ‘no one else’ can witness the physical aggression. This becomes even more complicated when there are other children in the home who parents struggle to give attention, nurturance and time to but can’t because taking care of a child with ASD can sometimes be a 24 hour job.

Raising a child with ASD can also take a toll on a marriage. Parents are left to care with little time for themselves as a couple. Finding someone else to care for the child is difficult. That caretaker or babysitter needs to be trained and be okay with some physical aggression and meltdowns. And the icing on the cake is that some families become one income households so that one parent can take care of the multiple needs and therapies for the child with ASD, meaning that money can be tight, which is another source of distress for parents. Sometimes the marriage doesn’t survive.

Parents are also left anticipating what might trigger their child and are constantly accommodating and modifying the environment to help their child to stay calm or regulated. As children with ASD get older, some parents of children who are aggressive have to make a very tough decision about whether or not to find a residential program.

Throughout this process that takes place over years and years, parents become burned out, distressed, anxious, depressed and sometimes even feel hopeless and helpless.

How to Gain Help for PTSD

For those families that are eligible, finding community and state-based resources such as Division of Developmental Disabilities (DDD) which can offer respite care. That is, for a few hours per month, a DDD representative will take care of the child with ASD so that parents can have a break. (To find the DDD in your state, do an internet search with the terms “division of developmental disabilities” and the name of your state.)

For parents who feel distressed, seek help. Consult with a psychologist to help you process your emotions and your experience, and offer you support throughout your journey. If feelings of nervousness or sadness become overwhelming, it is okay to consult with a psychiatrist for anti-anxiety or anti-depressant medication. It is okay for parents to seek help for themselves instead of maintaining a 100% focus on their child with ASD.
If your child’s school offers parent support groups, participate in them. Talk to the other parents who are also experiencing the same types of stressors and emotions. Find solace in each other. Have play dates with each other. Offer respite to each other.

Your Experience with PTSD and Parents of Kids with Special Needs?

If you have advice for stressed-out parents of kids with special needs or if you think you have PTSD, leave a comment in the box below. You can also contact me via email using this form.

PS: If you like what you find at DifferentDream.com, can subscribe to the RSS feed and the quarterly newsletter in the boxes at the top, right corner of this page.

 

By

Dr. Liz Matheis is a clinical psychologist and school psychologist in Parsippany, NJ. She offers support, assessments, and advocacy for children who are managing Autism Spectrum Disorders, ADHD, learning disabilities, and behavioral difficulties, as well as their families. She is also a contributor to several popular magazines. Visit www.psychedconsult.com for more information.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts