Special Needs Parenting, Trauma, & PTSD

Recently I encountered the comprehensive blog Different Dream Living–DifferentDream.com, run by Jolene Philo & was able to post many links to my writings related to special needs which I wrote about here:

https://specialconnections.wordpress.com/2018/09/05/it-actually-worked/

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She also has run a series that appears to be related to PTSD & Special Needs Parenting…of which I’ve only yet read one of the 13 installments.  I have a tendency to play the “approach avoidance” game with myself whenever getting close to those things or people in my life that are most associated with pain…& special needs parenting is a big domain fraught with many conflicting emotions & unresolved baggage.

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I had a relatively recent conversation with a hospital chaplain where she pointed out that many parents who have dealt with a complex special needs child have Trauma related issues.  I’ve also been told by a couple of respected sources that both my special son, Josiah, & myself may carry a form of PTSD, in particular in relation to some of the damage & fallout from a failed special education battle on his behalf…see here:

https://specialconnections.wordpress.com/2016/02/18/commenting-on-only-the-rich-will-have-rights-article/

Anyway I’ve decided to attempt to tackle the PTSD series en masse & write down my thoughts as they occur…hopefully in just this one post.  So I’m basically taking a big breath & diving in so we’ll see where this journey (always in God’s hands) will take me/us.  I hope/pray that if you wrestle with any of these issues you may be blessed in this raw sharing of where I am in this “facing the giants” journey.  May God cover us in his love, peace, & healing presence as we venture into the unknown…

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My plan going forward is to clip relevant sections of the various posts & share my insights & then maybe go back through the entirety of this post & intersperse some scripture images to add a bit of flavor & then post it “as is”…we’ll see…So I am actually attempting to polish this up a bit & am using bold &/or italics to highlight certain things.  This means that some of the “clipped” verbiage may appear in a slightly different presentation than that at the original post sites.  Please consider visiting the original posts for more info…

Here is the link to the first post in the series:

http://differentdream.com/2015/04/special-needs-parents-and-ptsd-survey-results/

Special Needs Parents and PTSD

This first post details some of the results of a survey completed by some of the blog readers related to PTSD & special needs parenting.  There is statistical info on individual questions & then details about when PTSD might have first begun…I’m already finding myself emotionally detaching from the topic as I read the various responses as detachment is apparently one of my main coping mechanisms with the pain.  I also find that I relate to many of the answers shared like those below; I’ll just leave the answers that are mine too–sort of, they are various parts of my “trauma” not necessarily the Initial part though; I ended up leaving a couple of comments that aren’t Completely my experience (never had a C-Section, not reported to CPS, never “diagnosed” w/ anxiety):

“Question #5

When did your initial traumatic experience occur?

Here are the comments parents left in the box:

  • During hospitalization
  • At birth
  • Before birth
  • After birth
  • Premature birth, NICU
  • diagnoses before birth
  • NICU
  • 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.
  • at diagnosis
  • 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”

Also, though I often appreciate reading about other people’s experiences when they hover very close to those sore spots in the soul it can use up A Lot of energy reserves just to consider those external events, let alone to brush against the pain lurking just below the surface…

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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.”

Here the Dealing for a long time without support is kind of what jumped out at me.  For many years I’ve felt guilty whenever I attempt to talk about the various traumatic aspects of caring for a complex special needs child/son.  Most people don’t understand where I’m coming from so have a limited frame of reference.  Other people can only hang briefly with my communication style…Often it feels as if people would rather turn away & pretend there are no battles/burdens that others face than try to “come alongside to help”…I’m also guilty of turning away from others’ pain so I do get it…

I honestly don’t know if there is “available & effective” treatment or not.  Part of “available” for me includes financially accessible, so that is always a big hurdle.  Also, because of the complexity of my son’s needs & the overarching way his issues have overshadowed my (& my family’s) life I have a hard time believing there is any liklihood of finding a “therapist” that might “get it” & also be skilled in navigating my Christian perspective…anyway it remains to be seen if “treatment” will ever be approached.

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Here is a telling comment to the original article:

“Thank you for bringing this topic into the light. As a medical professional I have seen the panic in the eyes of the parents of my patients. But then I made my journey to the other side of the bed as a parent of a chronically ill child. I’ve been saying for years that this is a very real issue and that more research needs to be done. I’m considering obtaining my doctorate so I can do more research on this topic. It is personal and real. Thank you for opening the door for so many who are not only dealing with a chronically ill child but also struggling as a caregiver.”

& another comment:

“It does seem to not only be a Different Dream but at Different World a lot of the time! 19 emergency surgeries for my son prior to 3 years old and the triggers that come from everywhere and nowhere. Years of functioning with no emergencies and adapting to the reality but then out of the clear blue back in the stuck mode of hopelessness and helplessness and shear terror that comes when the dose of reality is more than usual. I remember when the Twin Towers fell thinking that is how I feel every time my son has an emergency or I sense things are heading in that direction. Thanks for this blog, it really allowed me to know I am not alone in my feelings and this Different Journey in life. Knowing there was peace for a while gives me hope there will be peace again.

We thankfully haven’t faced the emergency surgery route but the many surgeries, & the majors (2 open heart, brain tumor, & liver transplant) have been especially challenging to cope with.  My husband & I just watched the 9/11 documentary by the Naudet brothers last night (it’s nearing that anniversary again) so the Twin Towers perspective of the above comment strikes home.  After 9/11 I was personally changed in how I approach & process news & information.  After having a special needs child my whole perspective on life was radically altered.  Both are watershed moments from which there is no escape!

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& another comment:

“I have been telling my doctor for months that I am losing my mind, my control, my ability to captain this ship. I get pats on the back and told that I am doing an amazing job and no one could manage what I manage any better, or probably as well as I do. AHEM. Does any sound come out of my mouth when I speak? lol. DROWNING, NOT WAVING HERE! I recognize what I’m experiencing as PTSD from being diagnosed from a traumatic event long before I had children. – you know, a couple of lifetimes ago. I had no idea it could be caused by caring for a chronically ill child(ren). Everything I can find talks about single events such as injuries or illnesses with treatments/cures…

 it’s relentless. And at the moment, there is no treatment, there is no cure, there’s no light at the end of the tunnel, there are no answers, no “one day when this is all over” to look forward to…. so it’s not really “POST Traumatic Stress Syndrome”…. Not sure what you might call it. “Constant Traumatic Stress Syndrome”? But this series is as close as I have found to relating to our situation. Thank you for writing it.” 

I’m clipping that comment because it impacts me & I relate but there are really no words that I can come up with to articulate how…

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The author’s reply to the above comment (there are details of the complex situation at the website post) may be beneficial to any of you on Facebook (I’m not)…

Jolene

Dear Amy, Wow! You are dealing with a lot, and as you said it is ever-present, continuing trauma that wears a person down. If you’re on FB, you might want to join a closed FB group that launched today, Sept. 1, for parents of kids with special needs who are dealing with trauma and stress. To join, you first need to register with Key Families, the organization hosting the group, here: http://www.keyministry.org/find-a-community-online/. Then go to this FB group (https://www.facebook.com/groups/1611201765795195/) and click the “join” button. Someone will approve your request and then you can join the discussion. This week, people are briefly introducing themselves and explaining why they joined the group. We’d love to have you! Jolene

 

Here’s the second post (& these remaining posts may be from various willing parents who participated in the PTSD survey):

http://differentdream.com/2015/04/special-needs-parents-and-ptsd-what-about-you-mom/

What about you mom FB

“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.”

Well I can definitely relate to the spirit of this post if not the specific details.  I do recall a couple of times in my life where someone reached out to me in compassion, caring, & sensitivity where I was almost emotionally undone by their loving concern.  It was such a rare experience to find that someone was also concerned with where I was (as opposed to only caring about Josiah’s needs) that I really didn’t know how to handle it (as in my armor was inadequate to combat the compassion!)…I’m not yet ready to look for treatment, per se, but am exploring this PTSD topic in the manner of “physician heal thyself”, including in this present post–obviously!

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Here are Jolene’s suggested steps for those seeking/needing treatment:

If you think special needs parents and PTDS 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.

Now we’ll see if anything might jump out from the comments section:

Jolene mentioned getting help from  Eye Movement Desensitizing and Reprocessing (EMDR) therapy…http://www.webmd.com/mental-health/emdr-what-is-it

one of the commenters mentioned these techniques:

“I use EFT (emotional freedom technique) and NET (neuroemotional technique) to neutralize traumas. I find EFT helpful when the trauma is happening, and I’m getting worked up. I find NET helpful for past happenings.”

Here is the link to Part 3 of the series:

http://differentdream.com/2015/04/ptsd-in-parents-6-ways-to-deal-with-adrenal-fatigue/

PTSD in Parents

That image reminds a bit of Josiah after his first Heart Surgery at 2 months of age & 4 pounds…not a place I really want to re-visit…

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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.”

I’m distancing myself again, just trying to focus on the task of getting through this post…”the new normal of being parents of a child with disabilities”…where there is No Normal to be found!

The NICU info is reminding me of what we faced for 2 1/2months (mostly just me as my husband had to return to our home 250 miles away & my parents would usually watch my 2 year old & my other infant son, who’d been in the NICU for 10 days)…Once Brandon, Josiah’s twin, came “home” (to my parents’ house) the breast pump became a daily occurrence.  I had to pump milk for 20 minutes after every feeding of Brandon & I’d take that accumulated milk with me to the hospital to feed Josiah (who had to be gavage fed through a tube in the nose for he was too weak to latch on).  After Josiah’s heart surgery he was no longer medically allowed to have my milk so then I would pump milk for Brandon that I’d accumulate in the hospital fridge or freezers on the Pediatric Congenital Heart wing of the hospital & then pass to my parents to give to Brandon.  I think I usually stayed bedside with Josiah once he’d had his heart surgery but much of that time has been blurred out & is not readily accessible for “total recall”.  U of M had a breast pump room in the Pediatric Cardiology wing of the hospital so I was far from the only mom of a young baby/child battling the breast pump front…

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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.

I get a counselor who comes to our home when we still lived in Northern Michigan (we moved when the twins were a year and a half).  I attempt to “process” various aspects of being a special needs parent…this counselor basically berates me for whining & tells me that I don’t know how good I have it & that most mothers in my shoes have been abandoned by their husbands so I just need to be thankful that I have an intact marriage!

Our pastor visits to offer “comfort” and asks what he could do to help.  I tell him I could really use a friend.  He practically yells at me “I Can’t Get You Friends!!!”  He prays with me that one visit & then I’m basically housebound for a year and a half before we move (Josiah was hospitalized twice in his first year with life threatening RSV infections so I pretty much only venture out to appointments–a lifestyle that became pretty habitual beyond the “use by” date)…the last year of that time I live with our three boys in our home while my husband lives with my parents 250 miles away, working a new job as we attempt to sell our house by owner.  Michael & I only get weekends together but connect by phone (I think this was pre-Internet in our home so no email, etc)…

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I share some of my heartaches with a close relative who’d been providing support as they were able.  They are tired of dealing with me & my issues so tell me “I can’t handle your neediness so I have to pull away.”  It takes me years to regroup that rocky relationship for me emotionally & to learn to rebuild trust.  I retreat even more into my emotional shell I try to lick my wounds as best as I am able.

My husband has ADHD & can only hang so long with complex topics, especially if we are having such talks after a long work day.  I don’t have many/any places to “process” the magnitude of what I wrestle with in relation to my son’s special needs & advocating on his behalf.  I share my frustration about these burdens & communication challenges with a pastor (I love my husband too much to lay huge amounts of details & baggage on him because if I don’t hold back sometimes I can push him into a mental/emotional overload & shutdown & he can get physically sick).  The pastor seemingly berates me for my communication style & cautions me to be more concerned about my husband without offering advice or support as to how I might manage my needs in the equation.  I feel overwhelmed by this criticism & lack of hearing my heart & retreat further…

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I acquire reams of material in the process of gearing up for yet another special education battle.  One hospital form reveals that an office staff person put my name in for investigation for possible medical abuse of my child (she thought I’d brought him unnecessarily to the hospital to get my own twisted needs met) because I’d asked her to watch him while I took a legal call that couldn’t be rescheduled (& I’d brought him for the first & only time to an “emergency” specialty appointment because he’d put something in his ear & the regular doc, who we’d already seen said we had to have it removed by the specialist) & was just around the corner from where my son was watching TV in the waiting room (& being young & autistic needed someone to keep an eye on him).  I had no one else available from “our side” to be on that legal conference call nor attend appointments with us & was under huge stress from that special education case.  I dealt with a few years of paranoia after this wondering if every aspect of my care for my child was under some type of scrutiny & if I was being secretly written up & investigated…

There are a few other issues I could mention but this gives a flavor of what that post brings up…& even attempting to write about this stuff relatively dispassionately is difficult…

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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.”

I’m sharing this author’s advice, not because I necessarily agree with nor act upon it, but since it may benefit anyone else who might read my post…

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I do find the scriptures to be very beneficial, both in their written & in a worship format.  I have been incorporating more scriptural meme-type images in some of my posts of late for I find the Word of God to bring Life & some of the imagery helps accentuate the truth…

Here are some scripture based songs of comfort I recently shared with a precious lady who is actively battling breast cancer…see this page for those conversations:

 

Prayer Requests – 9

 

The #4 area (support group above) is one of particular weakness for me.  I don’t have many outlets of a face-to-face nature where hashing these things out is possible.  Years ago I used to participate obliquely in a message board site called Moms Online.  It had boards on various health topics like Autism, ADHD, Congenital Heart, Urogenital Defects, Prematurity, Surgeries, ENT issues, Sleep Disorders, Learning Disabilities, etc.  My issue was that I could rarely find anyone who dealt with more than two topics at a time.  In the land of special needs parenting I found the constellation of Josiah’s needs to be beyond the realm of the other moms that were posting.  Because these & other issues bled into each other it became less beneficial to “lurk” & virtually pointless to “post”…I guess that’s partly why I choose to write in a blog about some of these things now…

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Well let’s see if anything in the comments section hits home:

One of the comments seems filled with anger & resentment so I won’t copy it here.  I do relate in various ways to what that commenter shared.  It is very difficult to have to continually “lay your life down” for another.  I’m not that altruistic by nature, in fact a “spiritual gifting inventory” I took years ago put “servanthood” as my lowest trait!  Being a special needs parent requires one to enter servanthood at an alarming rate & intensity…

“I’m so sorry for the agonizing anxiety of the fragile health needs in your family.
Thank you for sharing in such an understanding and sensitive way.

PTSD haunts me on many fronts…my past, my husband…sometimes my kids…
I tried to ignore it…and it chased me through nightmares…
I tried to explain it…and it cost me friends…
I tried to cover it up…and it forced its way into my brain through flashbacks…
I found a godly counselor…and it receded into the shadows…
Life is possible–although still precarious…”

This is heartbreakingly true & beautifully shared…I do relate in spirit to this comment…

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Here is a comment by this post’s author to the one really struggling…

Rachel Olstad on April 21, 2015 at 8:38 pm

Thank you all for the kind words everyone. My heart goes out to those of you who also struggle with anxiety and PTSD. My prayer for you is that the God of hope will fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Nina, especially, I pray that you not give up hope, but will keep seeking for the help you need with your children. I would encourage you to check out the Joni and Friends Family Retreats and see if one near you would work into your schedule – a totally life-changing event for families affected by disability.”

I’ve never looked into Joni & Friends as an organization or their Family Retreats.  We did get to attend a Siblings of Special Needs workshop weekend a couple different times on a needs based scholarship.  It was amazing to see how quickly my kids bonded with the other siblings.  I sometimes forget that they are also significantly impacted by living in a special needs family & it’s hard for them to find peers who “get it” just like it’s hard for me.  This has caused us to draw pretty close to each other as a family because we “get it” exactly as it is with Josiah (the totality & magnitude of his issues & needs though we are all on separate & unique journeys).  I used to keep Josiah home with me so that Michael could take the other 3 kids & do some fun & normal things with some degree of regular life.  This was a sacrificial self-segregation on my part because the magnitude of Josiah’s challenges, especially when younger, were so over-arching that sometimes all that could be remembered from an event were his screams (& the silent ones living in our heads)!

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Here’s the next post, the 4th in the series:

http://differentdream.com/2015/04/8-truths-about-ptsd-in-parents-of-kids-with-special-needs/

PTSD in parents of kids with special needs

I don’t have a lot of pictures of our medical experiences.  Usually I’m alone with Josiah so there’s no one to take such shots.  I also don’t have a cell phone so have to make a concerted effort to bring a camera along…This picture resonates & also makes me sad.  I can relate to this mom who is caring for her child.  She looks kind of like she’s trying to drum up a smile for the camera, or she’s caught mid speech.  I can’t decide if her eyes reflect a steely determination, forthrightness–facing whatever is happening head on, or a deer in the headlights level of fear.  Probably all of these & none of these simultaneously.  There is just a Slight chance I might be projecting here!

Years ago, when my oldest son, Nathaniel, was an early adolescent he had a bad break in his forearm that required surgery.  Because he’d never been under general anesthesia before they decided to keep him in-patient overnight–& I stayed with him bedside for the duration.  That hospitalization was a real revelation to me–as in Nathaniel was Way easier to manage in a post-op state than Josiah had ever been.  Now Nathaniel also has ADHD & he wasn’t an easy kid to raise when younger.  But the contrast between surgery & a hospital stay with Nathaniel & one with Josiah couldn’t be greater.  It was pretty sad that in doing that scenario with Nathaniel was practically “fun” in comparison to what it’s usually like with Josiah.  I wondered then if that was how it was for regular parents of regular kids, except for them their stress would likely be way up because they were in such unfamiliar territory.  For me (& Josiah) the University of Michigan Hospital System is practically a second home, so familiar & “comfortable”…

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.

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OK there is a lot here I Could speak to but I’m actually getting pretty overwhelmed myself & wanting to avoid remembrances of pain (as if that were actually possible) so I’ll re-read above & bold some of the key passages that stand out & let them stand on their own!  Some of this makes me feel that much more alone as it reminds me how others have received comfort & support through relationships but that is usually a closed path for me personally…

& from the comments section:

The author of this post shared here:

I think that’s the hardest part of this at times, Susan. For too long, medical professionals have treated us like this is an uncommon response to medical trauma. It isn’t, and it’s time they start recognizing it, offering support rather than condemnation.”

There is definitely no owners manual that comes with kids.  When special needs is thrown into the mix it is so much more complicated.  For years I would leave appointments feeling gut-punched or kicked-in-the-face by what was said, so much so that it was very hard driving home.  Josiah would intrude & disrupt every appointment & then basically scream & kick the entire ride home.  I would be exhausted & overwhelmed & uncertain where to go from there.  The providers rarely gave their info in a written format so sometimes I would be uncertain what to do.  Talking about it was nearly  impossible because it took too much emotional energy to just get through the moment & left none to battle my personal relationship demons to reach out & even attempt to process things…If someone would ever ask me about things I would do my best to share honestly about events, however people rarely inquired so I didn’t (often) intrude…

“My son is missing a piece of a chromosome and has severe heart defects. His birth and heart surgeries definitely gave me PTSD. I have a full on panic attack or freak out every time I have to go to the hospital which we unfortunately have many doctors appointments at and many surgeries. Someone in one of my support groups brought up PTSD for parents and I identify with that. My son is set up to see a trauma specialist next week however I am so busy with his stuff I have yet to find help for myself.”

umm yeah…

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“I just stumbled on this as I was doing research for my own PtSD. My daughter had a liver transplant as a baby and this whole blog is my life. For years I wondered what the heck was wrong with me! Now I just feel incredibly late to the party. I have PTSD. I trauma. And this is all very normal for what we experienced. Thank you for sharing your heart.”

Bingo (bolded portion above)!  Finding that trauma is “normal for what we experienced” can provide a measure of relief & insight, like after my conversation with the chaplain…

“I can relate to PTSD symptoms and I wonder if I tend to stay there trapped because my son’s condition is status and there are no surgeries no treatment and they say that’s all they can do for him. It’s all about quality of life now. I don’t give up and I find it hard to trust anyone regarding my son’s care. Just the word’s alone said by doctor’s can make raise your blood pressure along with messing with you mentally. What are the symptoms of PTSD? I know everytime I use the clinics soap in the restrooms I can easily be back at the hospital with our son…”

Some of those sights, smells, or thoughts can leave me literally shaking & sometimes breaking into a cold sweat…not a full blown panic attack but perhaps acute anxiety.  Some of the words spoken & overt or implied judgementalism are so wounding…

Hi Rochelle, from what you described your caregiving situation could be heightening your PTSD. Regarding your question about symptoms, this article might help. http://differentdream.com/2016/04/parent-ptsd-when-you-cant-put-special-needs-behind-you/. Are you on Facebook? If so, you might want to join the group I’m facilitating there for parents like us. The group is sponsored by Key Ministries, so you need to register with them at http://www.keyministry.org/find-a-community-online/. Then go to this Facebook link (https://www.facebook.com/groups/1611201765795195/) and ask to join the group. Jolene

Ironically I’ve Never wanted to be on Facebook, but having access to that community is rather tempting…

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“I just found this article. I should be sleeping before work tomorrow, but instead I’m awake researching this before my son’s Dr appointment tomorrow. I have twin boys. One of them has always been healthy, but the other has multiple significant health problems. I have a really hard time with the guilt of leaving one child behind to deal with the medical issues of the other. I also worry, because my son is immunocompromised, every time I hear about any illness. I panic, even if I read about the illness on Facebook from a friend that lives 5 states away! I know it’s irrational, but I still panic. I also have trouble not feeling completely supported by friends and coworkers. I don’t share a lot of my son’s medical details because I feel that it is personal for him, but because of that others don’t necessarily understand how serious his issues are. A lot on the mind of this mama tonight.”

as bolded above that is in many ways my story too…

Here’s the next post, the 5th in the series:

http://differentdream.com/2015/05/ptsd-in-parents-moving-from-negative-to-positive/

PTSD in Parents FB

“Those tumultuous years have passed, and my children are doing extremely well as adults. I know I have so much to be thankful for, yet at times I wonder if the emotional affects of those years are over. I realized recently, when my grandson became ill, how quickly I can relive and feel the emotions I felt during each hospital stay, blood test, MRI, doctor’s visit, and long sleepless night. That emotional turmoil is still part of who I am, so could I have PTSD caused by illnesses my children suffered?

Post traumatic stress disorder, a scary term most popular in the military world, is misused many times. But it’s very real. In fact, as I look back on how my children’s illnesses affected me emotionally, I see my own form of P-T-S-D, which attribute to the emotional feelings and flashbacks I have at times.

PTSD in Parents: Parental Pride

I was the parent. So whether the thought was conscious or unconscious, I felt that since God had blessed me with these children, I should be able to handle whatever happened in their lives. I allowed parental pride to mask emotions that would’ve been better handled as they developed.

PTSD in Parents: Tired

I wasn’t just tired, I was exhausted. Physically, emotionally and even spiritually, but I didn’t see it. I ran from appointment to appointment, cared for all the children, and got very little sleep for weeks at a time. My husband did what he could, but we were a one income family and had to work. So I did what I figured all moms did. I kept on keeping on, allowing my pride to push down the true exhaustion.

PTSD in Parents: Sad

I felt sad. Some days more than others. Sad when I saw my children hurting and unhappy. Sad that many days I couldn’t really help them. Sad that caring for a sick child was taking time away from the others. And sad that so many times I felt alone,

PTSD in Parents: Devastated

I was devastated because day after day, week after week my children suffered. Devastated that life was so unfair, devastated that I felt God wasn’t listening. And devastated that the dreams I had for my children may never happen.

PTSD in Parents: From Negative to Positive

During those years, when friends or family asked how I was, my response was always I’m fine. Because not being fine would have indicated I wasn’t a good mom. Would have required a long explanation that I was too tired to give, resulting in an outburst of tears. And would have been a sign that I lacked faith in what God could do. I see now how the

Parental pride,
Tiredness,
Sadness and
Devastation

I felt as our children experienced the emotional and physical pain of their illnesses, was traumatizing for me, yet I know with

Prayer,
Thanksgiving,
Support and
Determination

I can create a positive”

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Well, this is an interesting perspective & I would have liked the author to expand on how she went to Prayer, Thanksgiving, Support, & Determination & to at least provide an example.  When people ask me how I’m doing I typically answer “hanging in there” & sometimes append “hanging on to Jesus”…

Checking the comments:

Well, only one person commented so maybe others were/are having a hard time being convinced of the “ease” of turning a negative to a positive, hmm…

Here’s the next post, 6th in the series (& darn I’m only half way through & exhausted):

http://differentdream.com/2015/05/ptsd-and-special-needs-parents-5-ways-to-prepare-for-healing/

PTSD and Special Needs Parenting Healing

“Before my daughter was born with complex medical problems, I loved being around people and willingly shared my personal experiences. After months of hospital admissions and doctors’ wrongful blame for her condition, I avoided people and shared nothing.

Four years later she was mostly outpatient with a new team in a different hospital and we could finally settle home, but I wasn’t the same. Whenever something required emotional engagement, I’d instinctively turn away inside and shut off. I’d become reticent and wanted to stay that way.”

“The truth is, sometimes we’re too broken to fix ourselves and we need someone else to put us back together. (And if any Christian thinks differently, consider, Jesus wouldn’t have died if people could atone for their own sins.)

That’s a vulnerable place to be, and the last thing we want to feel when we’re reticent, but it’s also freeing. It means we don’t have to fix something we’re incapable of fixing.”

“We may not be able to heal ourselves, but we can prepare ourselves to receive healing.

5 Ways Traumatized Special Needs Parents Can Prepare for Healing

  • Acknowledge Your Brokenness: Sometimes we don’t know we’re broken, can’t accept we’re broken, or we know we are but don’t want to admit it. You needn’t sound a trumpet about it, but be honest with yourself. If you aren’t working the way you normally would because of a trauma you sustained, admit it.
  • Release Yourself: PTSD is not your fault, and neither is that you haven’t fixed it. Let yourself be broken without condemning yourself for it. Struggles and needs is a sign of humanity, not sin.
  • Just Be: Quit striving. Be as you are, warts and all. You won’t stay this way forever because you’re alive and living beings change. Don’t despair if you can’t see it. Sometimes we’re like trees; our growth becomes apparent only after a lot of time passes.
  • Small Chunks: You may be able to take in only small pieces of information or do limited activities before you overload and shut off. That’s OK. Do daily what you are able within your means.
  • Rest in the Process: Healing takes time. Rushing it can stymy the process. You will find more peace if you accept and anticipate this, and let healing use all the time it needs to complete its perfect work.”

She is really referring to letting the Holy Spirit do His work in us, I believe.  This healing process may move at a snail’s pace & be gentle & peaceful.  There is a scripture about God being gentle with those who have young, this seems especially true if the young have special needs…

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This is a beautiful response in the comments section:

“Brandi doesn’t know how often I have thought of her since I first heard about the baby and added my name to the prayer list.

She has rightly identified a problem when grief does not have a name. This is her turn, not mine, but while mine was significantly different, it did not lack the pain and inability to discuss my heart feelings with anyone but God. Thankfully, ours is the God Who can help us overcome the circumstances into which we are drawn and over which we had no control.

It was half a lifetime ago.I was forty then, I am 87 now. I have lived and gone beyond those days, and experienced the full sufficiency of God.”

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Here is the next post, the 7th in the series:

http://differentdream.com/2015/05/ptsd-in-parents-of-kids-with-special-needs-visualization-as-a-coping-tool/

PTSD in parents of kids with special needs FB

Visualization: Four Steps Parents of Kids with Special Needs Can Use to Cope

I also I began using visualization, or imagery, a technique I had learned years before while trying to become pregnant. The best way I can find to describe it is “visualizing yourself somewhere that brings you peace.” You can use the same technique to cope with PTSD by following these steps.

  1. Find a place. Finding a quiet place to spend 20 minutes visualizing undisturbed is vital.
  2. Use music. If music is soothing to you, that can help while you are visualizing.
  3. Close your eyes and think of one place. Think of the one place where you are most relaxed. Or imagine yourself surrounded by your favorite flowers. Pretend you are lying on a blanket, picturing every detail of the blanket, as you stare up at the blue sky with white pillow-like clouds. So clear are those clouds that you can make out designs in them. You can hear, crickets or maybe bees flying from one flower to the next. Take a deep breath to smell the flowers you love.
  4. Take your time. Remember that visualizing is much like redecorating a room to your liking. So take some time to make it what relaxes you.
    From one mom to every other parent dealing with the unique challenges of raising kids with special needs, I wish you peace of mind… even if only for 20 minutes at a time.

I have to say that as a Christian I find this process a little hard to get behind (no condemnation toward anyone who has no issue with it).  I think this might be a poor & more humanistic substitute for spiritual disciplines like prayer & meditation.  There is an aspect that this visualizing sounds like just “pretending” & though I thoroughly love fiction I don’t know that I want to gird myself up for battle by pretending things…

I think it would probably be better for someone like me to practice certain “relaxation techniques” that are more along the lines of my Christian faith.  Listening to restful scriptural songs; reading, meditating on, & memorizing scripture; & praying might be more to my taste.  I have also chosen to speak a couple of times to a hospital chaplain & then pray with them when heavy laden in the hospital setting.

Checking the comments section:

There are a couple of encouraging comments but nothing really grabs me.  I have shared a few scripture images that partially capture more of my focus & perspective.  There are also many others I’ve appended at the end of the post…

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The next post, the 8th in the series, is found here:

https://differentdream.com/2015/05/newborns-feel-pain-the-headline-that-almost-triggered-my-ptsd/

newborns do feel pain

This image is like Josiah Before his first heart surgery, I think he had like 16 lines going into his 4 pound 2 month old body After that first surgery…rough stuff here…

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How I Coped

I could go on. But in the interest of maintaining my mental health, I will instead explain how I coped with the headline instead of letting it trigger my PTSD.

  1. I showed the article to my husband. 
  2. I moved on to something else. 
  3. I returned to the article when I had a way to address it constructively. 
  4. I looked for the positives. 

I guess that this post is not super impacting to me.  I do appreciate the reminder to change our focus when certain things become overwhelming…Sometimes it’s hard for me to take a breath & shift away from something I feel intensely about, like when I was in the heat of battle with the special education system…

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Here is the next post, the 9th in the series:

https://differentdream.com/2015/05/why-special-needs-parents-with-ptsd-should-watch-inside-out/

What do the new Disney movie Inside Out and special needs parents with PTSD have to do with one another? At least these 3 things.

OK, so this is a more lighthearted post than most in the series & based on a movie that I’ve never seen so can’t vouch for…

“Kids who don’t have good support systems are more likely to be traumatized by rough patches in childhood than those who do. The same can be said for special needs parents who don’t have support systems. Or who experience repeated traumas as they care for their kids and make difficult decisions about care and treatments. Inside Out shows that all of us experience trauma. We are not alone in the constant struggle to manage our emotions and move forward when life is hard.”

#3 Special Needs Parents Should Laugh More

As was mentioned earlier, trauma and PTSD are heavy subjects. Many special needs parents with PTSD live in this place day after day and find it hard to laugh.

One thing that my special son has given to our family is the gift of laughter!  He is hilarious most of the time & often unintentially.  We laugh a lot in our family & seek & create humor with regularity, perhaps why we’re even now not completely broken!

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Here’s the next post, the 10th in the series:

https://differentdream.com/2015/06/why-kids-with-ptsd-need-mentally-healthy-parents/

This excerpt from Does My Child Have PTSD? explains why parents of kids with PTSD need mentally healthy parents.

The last post focused on a lighthearted movie that hadn’t yet come out at the time the post was written.  This post excerpts something from a book…

 “Children who are dependent upon a mentally unhealthy caregiver are less resilient and often suffer long-term complications of PTSD after a traumatic childhood event. Therefore, adults who want to nurture resilient children must first attend to their own mental health. Study after study proves this to be true.”

Yay, more guilt (potentially)…

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Well this post was interesting in that it shared quite succinctly the results of several studies that support understanding PTSD in kids & their parents & how the dynamics can interplay.  However most of the excerpts didn’t really grab me personally…

We’ll see if there is anything of significance (to me) in the comments:

There were no comments to this post nor to a couple posts above…

Here’s a link to the next post, the 11th in the series:

https://differentdream.com/2015/06/ptsd-and-special-needs-parents-calling-it-like-it-is/

The duo of PTSD and special needs parenting affects many families. Sheri Dacon finally realized her struggle with PTSD when she admitted she had it.

Special Needs Parenting and PTSD

I’ve been doing some research on PTSD and parents of special needs kids and how autism moms experience stress similar to that of combat soldiers.

Every time I consider whether or not I might suffer from PTSD, I feel guilty.

I’ve never been in real danger. I haven’t experienced the trauma and the stress of military action, or even that of a military wife. My husband works in IT. The biggest danger there is outsourcing.

I don’t live in a war-torn country, or even in a high-crime neighborhood.

I have a cushy life.

So when I say I think I might suffer from PTSD, I feel more than a little guilty, yes.

But it’s like no one’s bothered to inform my body.

My nervous system is a wreck. My muscles are tight. My hormones are so out of sync that I often don’t know which end is up. In certain situations, and in specific physical locations, I find it almost impossible to breathe. My voice doesn’t work the way it’s supposed to anymore.

Adrenaline and cortisol and whatever other stress hormones are in overdrive and my body screams “Danger!” way more than it should.

I wonder if I will ever be able to convince my subconscious that there is not really any danger.

It is PTSD. Post traumatic stress disorder.

It’s taken up residence in my very bones and it is okay for me to be weak and to admit the truth: it was trauma. I was beaten down and it may take a while to get back up. And it is okay.

Of all the strategies I’ve tried, this one seems to work best. A simple recognition of trauma — of PTSD– for what it is.

  • Letting go of the guilt.
  • Accepting what is.
  • Praying for the future.
  • Trusting in the one who heals in time.

Well I am literally very tired now, physically, & to some extent mentally & emotionally.  Perhaps in attempting to read, absorb, & respond/react to what is in this PTSD series I’ve taken on too big of a task.  Now I’m feeling rather numb & not really reacting to what is being shared by the authors.  It’s possible that I’m beginning to “accept” that I likely do have some form of PTSD.  It’s also possible that I’m in a form of “shut-down mode” to protect my fragile psyche.  I’m not in therapy for this or any other issue & facing some of these topics online & alone may be more trying that I’ve accounted for, who knows?

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Well this particular post had 43 comments so perhaps some will resonate:

There are a number of moving & interesting comments.  This one jumped out:

“The doctors of children with special needs (pediatrician, neurologist…etc.), should provide a handout to the parent(s) letting them know about the role of parenting a SN child and the possibility of PTSD and what to do about it.

Sheri’s article above was a ‘wake-up call’ for me. 14 years later and 3 major brain surgeries before the age of 2, my daughter’s life was saved, yet since 3 months of age she has done everything with the left side of her brain, following her hemispherectomy in 2002. Family disappeared and as a single mom, fighting the good fight for an appropriate education and therapies for my daughter, I am worn to the bone. In addition, for 10 years I faked that everything was “OK” in front of my older children, which stuffed my emotions down further, so I’m sure I haven’t fully processed them. How do I know this? I still get choked up recalling the emotional horror of the first few years, the knowledge that I WAS and still AM alone. My daughter still has seizures and I still get frightened.”

Is there such a thing as “fully processed” stuff???…not in this life, at least not for me!

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“…My heart goes out to everyone in these types of situations. I know how isolated you feel – because, let’s face it, no one wants to touch your war with a 10 foot pole, let alone volunteer to walk the front lines.

I’m trying hard to be strong, but I’m not. I’m very, very weak… I try to lean into God’s strength, but even that doesn’t feel like enough many days.”

Well that comment can pretty much stand alone!

Here’s the next post, the 12th in the series:

https://differentdream.com/2015/06/special-needs-parents-and-trauma-the-unseen-battle-with-ptsd/

Special needs parents and trauma doesn't seem real to onlookers. Christina Nelson describes her unseen battle with PTSD in this guest post.

I was at war…with my own expectations about mothering as well as societal and cultural norms surrounding parenting and grief. The truth is I was held captive by a deep shame in my heart. Ashamed that even though my baby was starting to grow and thrive, that his surgeries were sucessful, I continued to weep in the darkest hour of night, wiping my tears for a smile in the morning. Ashamed that while others found joy in my child’s successes, I continued to feel anxiety and fear. I searched for affirmation of my battle. Someone to tell me that it was okay to jump out of my skin each time I heard my child’s sharp barking cough or the shrill sound of his cry. That it was okay to hide from my friends who were celebrating their healthy babies and lamenting the pains of a common cold. That my foggy brain, the constant numbness and fear was all normal…that it was okay.

I didn’t begin to break free until I received affirmation that my feelings were a normal response for people who had suffered a traumatic event. Validation that I wasn’t weak, ungrateful or undeserving. That what I was feeling was a result of PTSD. This affirmation began erasing my shame and bring me out of hiding. It gave me permission to lean into my faith, community, and others for support. Most of all, it gave me the freedom to be real. To embrace and experience all of the mixed up, messy feelings that come with caring for a child with special needs-the joy, fear, anxiety, hope, chaos and success. Even the startling moments that send me into panic mode. Those are okay too.

Families and friends…if you know someone who is raising a child with special needs, please be unconditional. Please seek them out and help guide them into a place of feeling known, validated and affirmed. None of us are strong enough to fight this battle on our own.”

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I remember hearing my mother speaking somewhat contemptuously (to me) of another relative’s need for affirmation or validation.  Although she wasn’t speaking about me I “felt” like her words were directed toward me & I felt guilty of for feeling such a “need” to be understood in a sea of confusing & conflicting emotions.  Being the parent of a special needs kid can be incredibly overwhelming.  For most of those more than 2 decades I had no real frame of reference with which to compare as to whether I was doing a decent job…

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I used to use the Report Card analogy to describe this uncertainty.  When I was a kid I’d bring home a report card with all A’s & one B.  My dad would harp on me about why wasn’t that lone B an A instead of commending me for the entire report card being above average or better…anyway back then the standard was an “A”…but as a parent of a special needs kid I had no idea what the standard was.  Whenever I fell short of whatever I thought the required action/attitude was it was like I could hear my dad chastising me for that lone “B” again.  What was the standard for parenting with special needs?  How would I know if I was doing a good job or not?  If I did get a “B” & not an “A” was that really so bad?  What if I got an E or F, like in battling the special ed system, was that really the end of the world?  Is good ever good enough.  What if you are doing the “best” you can with what you have to work with at the time (but falling far short of internally or externally imposed expectations)???

I guess we as humans have a tendency to look for role models or examples.  We learn from each other’s experiences & mistakes & triumphs.  I didn’t know where to turn to see if I was managing my son’s needs “acceptably”.  When turning to scripture was I hearing my Heavenly Father’s voice or replaying the “old tapes” of my dad’s criticism of my slightly less than perfect report card.  I still don’t know what that standard is, but I’m trying to learn to live with that ambiguity with grace, peace, & forgiveness for myself, my son, my world…

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Here is the 13th & final post in the series:

https://differentdream.com/2015/06/special-needs-parents-and-trauma-medically-induced-ptsd/

In the final post in the series about special needs parents and trauma, Kathryn Sneed shares her story of medically-induced PTSD.

“I would have flashbacks watching shows that had a child in the hospital or going into surgery, and I would have to change the show before I had a full blown panic attack. I would have nightmares about people choking. Just choking over and over and nothing could stop it.”

I can remember watching the TV show House on DVD with my kids.  I was constantly pausing the show to explain how yet another diagnosis or surgery being portrayed was something we’d experienced with Josiah.  Or there would be diagnostic tests like MRI’s portrayed & Josiah & I would “reminisce” about his hospital experiences.

Whenever I had to fill out pre-op paperwork, even before some procedures, I’d get almost panicked for there would be details required in virtually every bodily system.  Having to recount those diagnoses & surgeries so many times became overwhelming & would lead to some degree of emotional shut-down just to try to get through the present-tense surgical or procedural experience.  It was all exhausting!

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“I share my story to raise awareness. Combat-related PTSD it not the only type of PTSD that exists. Caregiver trauma and PTSD due to caring for children that have special needs is real.”

I guess after reading all these posts in the series that it is highly likely that I have some degree of “caregiver trauma” & PTSD from parenting a special needs child.  Where do I/we go from here?  Well that remains to be seen…

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I hope you have been blessed by this post & have visited any of the original posts from DifferentDream.com that might have sparked your interest.

May the Lord be with each of us, providing comfort, healing, peace, joy, hope, strength, grace, rest, & refreshment to each of us as we continue to face our daily (sometimes moment by moment) challenges.  May we glorify Him & encourage each other!

God Bless You…

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The verse above was the end of the original post but I decided to add this bit of addendum, & lots of encouraging scriptures to the latest version…please forgive any duplicate scripture postings, they are inadvertent.  Blessings to All!

Well, I fell into an exhausted sleep & during that “rest” at least partially subconsciously “processed” this PTSD topic.  I actually remembered numerous conversations with my brother where I mentioned feeling/being “traumatized” & was basically mocked for this perspective.  I guess even my speech years ago carried the flavor of acknowledging “trauma” before ever having read or heard about it from any outside sources.

In talking about some of this with my husband upon waking today he reminded me of how he became aware of how critical my family was of me, even in the early weeks of our marriage.  He helped put into perspective the extreme difference in the points of view we felt in the midst of a special needs family & what various parenting criticisms were thrown our way by outside family members who just did not “get” where we were coming from for they really had no understanding of the magnitude of the issues we faced.  Thankfully God sees & knows what each of us wrestle with…

It just now comes to mind how angry I used to get after having some conversations with my mother (in particular) when she would recount some of the health challenging experiences my sister-in-law faced with a couple of her kids a couple of times.  My mom would go on about how hard things were as if I had no comprehension of the magnitude of the issues parents wrestle with when their child’s health is compromised.  None of those health concerns in my brother’s family rose to the level of “special needs” at least not even close to what we faced with Josiah.  They may have somewhat paralleled what we faced with Clarissa with ADHD & Speech Therapy & Nathaniel with ADHD (& some school accommodations) but nothing touched Josiah.  My anger stemmed from the juxtaposition of my mom’s seeming compassion & care for my brother’s family’s circumstances & obtuseness about ours…the ugly beast of sibling rivalry–uggh!

Anyway, one of the hard things about diving deep into this PTSD topic is seeing how so many people find healing through support & relationships.  That’s just not an area where my life has been in balance, going back to my wedding preparation & the bizarre loss of “friendships” over choices I made in the wedding planning & execution.  I spent many years mourning friendships & my inability to comprehend the problems & my tendency to gravitate to people who were rather dysfunctional.  After moving across the country & 2 1/2 years later having the twins & all Josiah’s “stuff” even the concept of pursuing friendship-style relationships went completely by the wayside.  Nowadays I just accept that that part of life is very much in my past & I was very blessed in my younger years to have some deep & meaningful friendships with many people that were a tremendous blessing in a very different season (planet) of my life.

In my case the supportive relationships I have access to now are primarily with the Lord & with my immediate family!  I guess that will just have to be enough…Occasionally God has sent someone for a season to provide encouragement & prayerful support…& that is Always Such a Blessing!!!

 

Well I ran into a major snag while attempting a bit of polishing to this post & lost a lot of beautiful scriptural images I’d hoped to share…this may be only a partial re-creation…Many of these verses can provide sustenance during times of “famine” of the soul.  I hope that you will look to the Lord to supply All your needs “according to His riches in glory in Christ Jesus!”

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4 thoughts on “Special Needs Parenting, Trauma, & PTSD

  1. Valerie, thank you for featuring Different Dream’s series about PTSD in parents in this post. Getting the word out is important to me. Many of your readers might also be interested in my book “Does My Child Have PTSD? What To Do When Your Child Is Hurting from the Inside Out” which was published by Familius and is available at Amazon and through your local book store.

    Liked by 1 person

  2. Pingback: Unexpected Blessing | Special Connections

  3. Pingback: Commenting on “Only the Rich will Have Rights” Article | Special Connections

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