Tag Archives: Isabella

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. 

Christmas Changed

Before Isabella’s Acquired Brain Injury (ABI), Christmas was a time filled with decorating and shopping.  We would listen to and sing Christmas music; Isabella even had her own version of a few songs.  We would stay up watching Christmas movies and go out at night to enjoy the Christmas lights.   Our weekends were filled with Christmas parties and other gatherings.  Christmas morning was the chaotic rush to open gifts followed by visits with family etc.  Isabella loved Santa as long as she didn’t have to get close to him.

Since Isabella’s ABI, Christmas is very different.  It is more thought out and planned.  Everything is structured and organized.  During the holiday season, life is kept as close to regular as possible.  Isabella has significant memory deficits so I have spent the last few years, reintroducing Christmas to her.  As each year passes, Isabella “gets” Christmas a little bit more.  Our Christmas is no longer that crazy, chaotic time that it once was.  We have had to make some major changes to help Isabella during the holidays.  Some of these changes include:

1.)    We stick to our schedule.  With the excitement of the holiday it is very easy to get off track.  Isabella needs structure and consistency.  We have a visual schedule on the wall with all of our appointments and therapies.  Bedtime and meals are the same every day.  All Christmas activities are scheduled.  This includes putting up our Christmas tree, decorating the windows etc.  I  DVR Christmas movies so Isabella can enjoy them at an hour that is reasonable for her.  Spontaneous nights of light seeing, staying up late to watch Christmas movies and such are a thing of the past. 

2.)    Social stories are essential in preparing Isabella for Christmas.  Social stories are written to describe a particular event.  They are very detailed in what will happen, how it will happen and when.  Isabella doesn’t do well with the unknown or unstructured activities.  Those carefree Christmas mornings have given way to a very thought out and planned one.

3.)    Less really is more.  Isabella gets overwhelmed easily.  Our Christmas decorating is limited to a Christmas tree.  This year Isabella wanted to put decorations on the windows so we got the window clings.  They are easily removed or covered by curtains.  On Christmas morning, presents are opened in shifts.  Isabella will open one, wrapping paper goes in the trash and the gift goes into my bedroom (to eliminate the sensory overload).  Then Isabella can open another gift. When everything is opened then they all get put away.  Nothing is left out under the tree.  Even on Christmas the rule is still only one toy out at a time. 

4.)    Santa had to be adjusted.  Post ABI, I was conflicted on how to handle Santa.  Once Isabella mentioned Santa and she had an idea on who he was I decided to go with it.  Isabella freaked out when she heard that Santa comes down a chimney and leaves presents under our Christmas tree.  For a child who is filled with anxiety and hallucinations the thought of a “stranger” coming into the house terrified her.  Once Isabella was able to verbalize that, Santa quickly became the person who “poofs” the presents into our house. 

5.)    Parties, holiday gatherings and family visits are on hold.  Isabella is struggling with her day to day life.  She has no ability to cope or adapt.  These are not things that Isabella can handle.  I miss my family and friends but I am not willing to sacrifice Isabella in the process.  I am not going to set her up to fail and cause her to regress further.  Since Isabella’s ABI, family and friends either mail gifts or drop them off when she is in bed asleep.  This also allows me to visit with them while she is sleeping. 

6.)    Christmas shopping is done entirely online.  At this time of year, the stores are absolute chaos.  For a person with a brain injury who already has sensory overload, stores are a disaster waiting to happen.  To eliminate this, we shop online.  No babies crying, no perfume to smell, no loud music, no crowds, no long lines, no people talking too loud, no blinking Christmas lights etc. 

While Christmas maybe very different from how it once was we make the best of what we do have.  The true meaning of Christmas is what is important.  The twinkle in her eyes as she talks about Santa, the magic in watching her decorate the Christmas tree and the excitement is what really matters.  It is not about whom you are with, how many presents there are, what parties you attended, it is about enjoying the simple moments.  Isabella is my Christmas miracle.  I am truly blessed to have another Christmas with her.

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.