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:
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.
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:
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…
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:
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):
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
- 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…
“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.
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!
& 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…
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)…
Here’s the second post (& these remaining posts may be from various willing parents who participated in the PTSD survey):
“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!
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:
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…
“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.
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…
“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?
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)…
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…
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…
“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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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…
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:
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…
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…
Here is a comment by this post’s author to the one really struggling…
“Rachel Olstad on April 21, 2015 at 8:38 pm