Telling Our Stories

Part of what prompted this blog post is the publishing of an article in Milwaukee Magazine this month about my accident, and how we began an adaptive climbing program with Adaptive

Adventures in the Milwaukee area.   Overall, the article is great....but I struggled to see in print, a comment I made in reference to how my accident happened:  “I was really wound up from taking him to medical appointments, you know, signing over my life to take care of [my son], who had some behavioral challenges as well,”   Even prior to doing an interview about my experience, I struggled as to how to broach the subject of my parenting challenges and how the reality of the intense stress I felt [parenting a challenging child] led to the judgment error I made almost 3 1/2 years ago.  I struggled with the perception that I might have some resentment toward my child, or that my comments might be viewed as blaming, somehow.  Nonetheless, I kept coming to the same place understanding in my heart....thinking, things happened as they did.  This is my truth.  

And thus, over the past 3 1/2 years I have shared some variation of how parenting stress played into my accident, but I have never written about it.    At this point I feel I have earned some degree of respect as someone who has weathered struggle....mostly as a survivor of [physical] trauma (and if you can't believe a one-legged mom trying her best, who can you believe, right? ).   What continues to occur to me most at this point is how I continue to be a parent of a CHILD who is a survivor of trauma.  A child who brought a profound degree of trauma into our home when he joined our family.   While I have struggled to make my way back to health from injuries, the scars imprinted on my son's psyche after suffering over two years of horrible orphanage neglect are less easy to recover from.   We continue to deal with them every. day. still.  I cannot begin to tell you in a single post, how mind-wrackingly, soul-wretchingly difficult it has been to parent our son, who suffers from a laundry-list of issues (Developmental Trauma / Reactive Attachment Disorder (RAD), PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified) , ADHD, Speech and Language Disorder, and others).  It is tempting to think, "Why wouldn't we be the perfect parents to parent a challenging child?  We have backgrounds in mental health / counseling, psychology and education....you'd think the match would be perfect, right?" Um.... Realistically, the daily grind of parenting a child whose life-goal has been to keep from attaching, to prove how unlovable he is, and whose brain is still stuck in survival mode 75 percent of the time is very taxing on a mother and a family.    All sugar-coating aside....every day is a struggle.   I am at the stage (call it maturity) where I don't care about impressing others with a Susie-Homemaker mommy image or a need to prove something.   I was and am a struggling mom...with a child with special needs....in a family trying to do our best.  I am also parenting with a disability, which makes life quite interesting. One of the good things that comes out of surviving something tough is that it helps keep things in perspective while peppering one with a good dose of grit.

"That" day...

People will often ask what came into my mind at the moment of my fall.  Truthfully, after the initial "oh shit" moment and self-berating over the "stupid" mistake of not clipping in, as I laid on the floor I lamented over and over to the gym manager how stressed out I had been to the point of being completely fried.    Over and over again, I said "you have no idea how stressed out I have been.  Oh my god...I can't believe I did this.  I have been so, so stressed in parenting this kid."   The day had been packed with appointments, my kiddo had just had his three-hour long in-home ABA (autism) therapy that morning, and I thought I'd squeeze in an hour or so of climbing before another appointment with the developmental specialist.   Yes, I had been horribly injured, but my mind immediately raced to all of the all of the responsibilities I needed to reschedule.  I never lost consciousness....in fact, I could give the phone numbers of places needing to be called to the gym staff, while still in shock.   It wasn't until I was safely strapped into the ambulance on an IV drip of dilaudid that I could take a deep breath and tell myself:  "Okay....this is your wake-up call.  Now you're gonna NEED to take care of YOU." 

After all of the ugly stuff that went on in the ER and I was wheeled up to my hospital room, I verbalized to the nursing staff that it felt good to finally, finally have some peace.  Obviously, because I had these bad injuries I did not even feel guilty this time. (guilt is another bad habit we moms of kids with special needs pick up).   While I had been on perennial auto-pilot and constant worry-mode about my son (in trauma-language this state would be called hypervigilance [Here is a good article on that: Autism Moms Have Stress Similar to Combat Soldiers. ), I realized that I had now been forced into a situation where I needed to confront this reality.  Luckily (yes, luckily) I would be going home to a hospital bed in the living room, and a competent group of therapists from Easter Seals would continue to work with my son.  In addition, family would be needing to step up to the plate and help out as well, which gave everyone a taste of what it was like to deal with the challenging behaviors of my kiddo on a first-hand basis.   

Present-Day

Perspective is a good thing, and sometimes the enduring of a life-changing experience gives a person a kind of permission, or authority, if you will, to be taken with a bit of seriousness.   My hope is that by sharing my story, folks will begin to understand just how difficult it can be for parents who take care of children with special needs, and how our lives are affected.    As a parent who sits on an advisory committee at Children's Hospital of WI, one of my main goals has been to champion the need for more emotional parent support.   (Emotional support, peer support, or anything which is not "medical" per-se, does not receive nearly enough funding or attention.   Apparently, specialists can medicate and treat our children and the parents will magically patch themselves together somehow.)  It has taken a horrible accident to be able to speak honestly about this, and to be at a point where I can truthfully admit these struggles.    (Parenting a child with attachment challenges and a history of trauma / neglect is a topic worthy of its own post, for sure.)

There have been several learnings over the past few years.....  

• Self-care is not an OPTION.  It is a NECESSITY.
• Remaining ACTIVE is healing for the body and the soul.
• We NEED each other, and we need to stop pretending that we've got it all together...because let's face it, none of us do.
• I needed (and maybe WE need) to stop feeling as if I am / we are not doing enough....for our children, for our jobs, etc., and replace that feeling with self compassion.
• There is power in finding and embracing your truth and your passion.....which can be used to ignite new ideas..
• It is very important to refrain from judgment, and try to embrace the belief that we all do our best, given the circumstances within which we find ourselves.   We need to be compassionate with others as well as ourselves.
• Our stories are powerful, and no one should be ashamed of their story / their truth.