Mommy of a Miracle: Why the shame?

Kristin Olliney and her miracle, Isabella, making new milestones every single day.

Brain injury is known to increase the risk of some psychiatric disorders including but not limited to anxiety disorders, personality disorders, depression, substance abuse disorders, self injurious behaviors, obsessive compulsive disorders (OCD), rage, aggression, post traumatic stress disorder (PTSD) and the list goes on and on.  Both survivors and parents of children with brain injuries find themselves suffering from these psychiatric disorders as a result of brain injury.  These conditions and disorders are often hidden from others because nobody wants to look “crazy”.  Our society has taught us that having these disorders is bad.  We are often told to be strong or grateful for surviving.  Then we are shamed into feel like something is wrong with us for admitting that we need help.

As a result of Isabella’s Acquired Brain Injury (ABI), she now has severe anxiety.  The separation anxiety, social anxiety and general anxiety is debilitating not to mention completely heartbreaking.  Isabella wakes up every single morning screaming from a panic attack.  This is how our day starts.  Isabella doesn’t like to leave the house because there are “bad things out there” and she feels safer at home.  When we are home, the routine is familiar, the expectations are the same and it is pretty predictable but when you leave home there is a lot that can’t be structured or predicted.  If other people look at Isabella while we are out at an appointment, she immediately tries to hide in her stroller and she starts to panic.  Unfortunately, anxiety for both a brain injury survivor and the parent of that child is all too common.

Isabella suffers from auditory hallucinations and on occasion visual hallucinations.  Isabella has these constant “sounds” that she hears.    About a month post ABI, I found Isabella under our kitchen table rocking back and forth, shaking and screaming while covering her ears.  It was like right out of a horror movie.  Over time, she was able to verbalize what she was experiencing.  The “sounds” that Isabella experiences are similar to static, stomping, banging and often sound like Charlie Brown’s teacher (talking that you can’t understand).  They scare her.  Isabella hates to be alone because of the “sounds”.  The “sounds” are constantly there and at their worst when she is tired, sick, in the car, post seizure and at night.  During the day, I try to keep her distracted and we have set up noise machines to help drown the “sounds” out.

Isabella has no regulation of her mood, behavior or emotions.  When Isabella feels something (happy, mad, sad etc) she feels it very strongly.  Isabella can escalate to rage and aggression within a second.  It is like a switch goes off and everything changes.  Isabella has been said to appear to have the worst case of ADHD that most people have ever seen.   These symptoms are all too common for survivors of brain injury.   We have trialed many medications to try and help Isabella.  Unfortunately, medication has been unsuccessful.  Some medications cause Isabella to have a paradoxical reaction which means instead of helping her slow down it makes her race worse than she was before.  Some meds cause her breathing and heart rate to drop where she appears to be lifeless.  Other medications have no positive effect.  When you have a brain injury, medications react different than they would in a neurologically typical brain.  Isabella receives in home behavioral to help her learn coping and adapting skills.  While Isabella knows what she is suppose to do, applying the skills is where she can’t seem to connect.

Isabella has extremely low self esteem.  She can’t get her brain and body to work together.  As a result she feels stupid, dumb and sad.  Isabella tries so hard every single second of every single day.  It is heartbreaking to watch her continue to try and not succeed.   Isabella knows that before her ABI, things came much easier.  Now everything is a lot harder and as a result she feels negatively towards herself.   I use a lot of positive reinforcement with Isabella.  I ask others that work with her to use it as well.

When we hear of PTSD, we often think of members of the military.  However, PTSD is not limited to the military.  Some of the symptoms of PTSD include nightmares, flashbacks, difficulty eating or sleeping, etc.  Many brain injury survivors live with PTSD every day.  Many parents of children with a brain injury also suffer from PTSD.  When you see your child dying before your eyes, it changes you.  It changes your entire world and everything that you thought you knew.

Isabella, like many other survivors of brain injury suffers from psychiatric disorders as a result of a brain injury.  Parents of children with brain injuries can also suffer from psychiatric disorders because they have witnessed the unimaginable.  Often times people go without treatment because of the shame that often accompanies these disorders.  Brain injuries change not only the survivor’s life but also those directly involved.  It is ok to feel how you do.  It is ok to get the help that you need.  Let’s end the shame that is involved with these disorders.

Guest Blogger, Kristin Olliney, is the mother of 7-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor. 

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