Tag Archives: brain injury association

First Day of Second Grade – Mommy of a Miracle

One of the hardest decisions on Isabella’s journey has been the decision to homeschool her.  It was honestly something that I never even thought of or considered until her medical team recommended it last year. The decision to homeschool was one of the hardest I have ever made. I knew it was the right choice for Isabella.  When it comes to her I will do anything to help.

Last year, once Isabella realized that we were going to do “work” at home she excelled.  Isabella loves to learn and that smile just lights up the room.  As Isabella’s regression set in, the one thing that she was consistent in was her “work”.   I was so happy that Isabella continued to thrive academically.  When the Hyperbaric Oxygen Treatment (HBOT) stopped, Isabella quickly went from regressing to a downward spiral.  It was heartbreaking to watch Isabella lose skills that she had mastered and worked so hard to achieve.  It frustrated Isabella because she knew that she had already learned certain things and yet she was unable to remember.  As this past summer approached, Isabella and I worked every day to maintain what skills she still had in hopes of preventing further loss.  No matter how hard and challenging it was for Isabella, she was always excited to do her “work”.

As August approached, Isabella and I started talking about second grade “work”.  Isabella would ask with excitement about all the new things she would learn.  On Labor Day weekend we redid our “work” area in preparation for the “First Day of Second Grade”.   As I watched the excitement and joy in Isabella’s eyes, I thought this is how school is supposed to be for a second grader.  It is not supposed to be like last year- filled with terror, crying, screaming and aggression.  I always knew that I made the right decision but seeing that excitement in Isabella for second grade solidified my choice.

The “First Day of Second Grade” finally arrived.  Isabella was ready to do her “work” the moment her eyes opened.  I can’t express enough, how even though Isabella continues to regress in so many areas, it is a true blessing to see that her love for learning is still there. It continues to be our silver lining.  As we embark on another year of learning, I am excited to see how far Isabella will go.

Homeschooling was one of the hardest decisions on this journey and yet it has now become one of the best decisions.  In true Isabella fashion, she does things her way.  Isabella does not follow the path of everyone else, she is unique and likes to make her own path.  For that I am forever grateful.

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-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.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

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The Best “Job” In The World

Joan helped plan and execute a volunteer-run yard sale in 2011.

Joan helped plan and execute a volunteer-run yard sale in 2011.

Today’s blog is written by Joan Rauch, a BIA-MA volunteer who has been giving her time and talents for the past four years.

All through our lives we volunteer. Early on, we are often “volunteered” by our parents and become “committed volunteers” when our kids play sports or are involved in other activities such as scouting, music or the arts. At work and church, we are often “recruited to volunteer” for all kinds of worthy causes. To “volunteer” becomes ingrained in our daily lives, so much so, that we just accept that it is a job that must be done.

Then one day the thought of retirement brings the realization that we are now free to do whatever we want; to get involved in the things we have been waiting a life time to do. Some of us, like me, have been fortunate enough to be involved part time in the daily lives of our grandchildren. And many of us begin to look at the world in a different way; we look back and appreciate how fortunate we have been. Now that we have the luxury of time, we realize, that giving back, “volunteering” for the right cause, is indeed important to us. The ‘spirit of volunteerism’ becomes a part of us, centered in our thankful heart.

My own, ‘yes, I will’ moment came while reading the weekly insert in the Worcester Telegram. Volunteer opportunities filled several pages, but the one that caught my eye, was the one about the Brain Injury Association of MA. It was even located in my home town!

The article spoke about the chance to learn, to help and become a part of a vibrant and continually growing organization, one dedicated to people with brain injuries, their families and their care givers.

It has been almost four years since that article appeared and I know I made the right choice. I got to be a part of a welcoming environment, one that appreciates everything we volunteers do, no matter how big or small the job. As a volunteer, we are provided with on-going instructions for any task we undertake and we are permitted to attend appropriate client-focused education programs held by the BIA. We are accepted as part of the BIA team. We get to participate in activities involving brain injured adults and to experience, first hand, their  efforts to expand their capabilities and to witness their joy when they succeed.

As a volunteer, I get to work with other like minded people, ones who help add to my own sense of well-being and accomplishment. In a world full of possibilities, ”volunteering” at the BIA of MA, truly can be, one of the best jobs in the world.

Mommy of a Miracle: “You are not Alone”

Kristin Olliney

Kristin Olliney

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. 

“To the memory of Giovanni (Gio) Cipriano”

When Isabella survived her Acquired Brain Injury (ABI) I desperately sought out other parents of children with brain injuries.  Statistically speaking I knew I wasn’t alone and yet I couldn’t find any other parents.  I knew there were others, after all, every 40 seconds another American youth enters an emergency department with a brain injury.  I needed that connection with other parents who could relate to having a child with a brain injury.  Only another parent on this journey could fully understand the emotions that you go through when you have a neurologically typical child one moment and then a child with a brain injury the next.  At one point we all had a neurologically typical child, some of us longer than others.

I wanted to find an online support group.  I needed the option to “talk” whenever I wanted to, on my own terms from the comfort of my own home.  In-person support groups were not going to fit it into an already jam-packed schedule. Plus, I needed more than a once-a-month meeting.  I wanted a safe, non-judgmental place to go to at any given moment.  Most of the online brain injury support groups I found were a mix of survivors, spouses, significant others, friends, family etc.  While these groups have helped me understand so much about brain injury and in particular, survivors, I needed more.

When I didn’t find an online support group specifically for parents, I started my own on Facebook called, “Parents of Children with Brain Injuries.”   I had hoped to have at least a few parents join.  One-by-one as parents joined, I realized that I was no longer alone and neither were they.  We found comfort in knowing that while our paths may be different, the journey is the same because we all have that common bond of brain injury.  We all belong to that “club” that we never asked for or imagined we would belong to.  That feeling of being isolated from the rest of the world had ended because we finally had each other and we are surrounded by parents who “get it.”  Our child survivors range from babies to adult children and our stories vary by how the brain injury occurred.  We are all at different places on this journey.  Some of us are brand new to life with a child who has a brain injury and others have been doing this for quite some time.  “Parents of Children with Brain Injuries” has become our safe non-judgmental place to vent our frustrations, cry over the heartache of what has happened to our children, and cheer each other on while sharing the victories that others couldn’t possibly understand.

Having a child with a brain injury has changed us all.  Our children are now faced with a very different life as are we.  Some of our survivors are being bullied because of those differences.  We struggle with helping the rest of the world understand that while some of our children look exactly the same, they are now completely different on the inside.  We all go through the process of grieving the child we had pre-brain injury and accepting the child we now have post brain injury.  We support each other in that moment of weakness when you don’t possibly think you can make it another day. We get angry when another survivor is treated unjustly by the school, the rest of the world or by family and friends.  We share possible treatment options, how to raise awareness, discuss medical procedures, medication experiences and how to fight insurance companies.  We celebrate the successes of hearing a nonverbal survivor make a sound, watching survivors figure out how to throw a ball or walk.

Two weeks ago, we had our first loss.  A new member joined and she had a child struggling to survive a brain injury.  Unfortunately that child did not make it.  Words cannot express the sadness that was felt.  I have never met this mother nor her child, and yet my heart ached just the same.  After all, at one point most of us were in that same position (watching our child die), praying our child would make it through the night and defy all possible odds to survive.  The reality is that every five minutes someone dies from a brain injury.  That someone has a parent somewhere.

What started out as my need to connect with other parents of children with brain injuries has forever changed who I am as a person, a mother and a caregiver.  I may never meet these amazing parents but I can’t imagine my life without them.  This group and our members have had such a profound impact on me.  I can’t express how much these parents have changed my life.  If you haven’t found a brain injury support group, I highly recommend it.  When you find the right one, you might wonder how you ever survived without them.

To locate a support group in Massachusetts, visit http://www.biama.org/groups.html and click on BIA-MA Support Group Listing. Or, click here.

Don’t Wait, a guest post by Catz LeBlanc

Catz LeBlanc goaltending for her handball team.

Catz LeBlanc goal tending for her handball team.

Today’s blog is written by Catz LeBlanc, a member of the ‘Amazing’ Brain Injury Support Group in Framingham, Mass. Originally from Madison, WI, a former Physician’s Assistant, collegiate soccer goalkeeper, ice hockey player, team handball goalie and mother of an “amazing son,” she suffered a sports concussion as a team handball goalie. Two months later, she suffered a more severe concussion when her Volkswagen Beetle convertible was rear-ended by a truck and totaled. Searching for a book to provide some comfort, guidance, understanding for her challenges with the fallout of a traumatic brain injury, she found none. So, she wrote one. She continues her rehabilitation four years since the injuries.

Don’t Wait

Everyone is so busy.  No one has enough time, no one has enough money.  Someday, someday, they will do what their heart and soul desire, in the meantime, so much needs to just get done.

Last week a woman said she thinks she has maybe five to seven decent years of cognitive function before she may succumb to her older siblings’ demise.  There was urgency in her voice, tired of helping everyone else, everyone always needing something from her–she just wanted to live her own life–with whatever remaining quality she has.

If I could, I would fill Gillette Stadium to capacity, everyone shouting “Yes, you, do it! We give you permission!” If I could, I would have all the birds in Boston sing outside your bedroom window, “Wake up! Wake up! Today’s the day YOUR life begins!”  If I could, I would have the planes at Logan fly over you, pulling signage, “TODAY! Yes, you, Today- GO FOR IT!”

It would be tricky, but we might be able to have you professionally kidnapped, to somewhere you can finally do what your heart and soul have been whispering.  Trickier still would be to have all the family and people connected to your loathsome to do list- have THEM professionally kidnapped and dropped off with provisions to an island to care for themselves for the next whatever number of years.

Perhaps your next fortune cookie will read, “This is it. Last call-You have 6 months of quality left. Use wisely.”  Would you change your priorities then?  What’s it going to take to have you put you on the top of your list?  Are you waiting for a parade with bells and whistles, a marching band, to let you know, OK-Now! Go ahead, FORWARD march!

Human illusion of time left in our lives, it’s funny how we somehow calculate it, as if a physics equation.  Denial is a powerful thing. Human nature is human nature.  “I’ll just get these two more things done and then I’ll sit down and give myself 30 minutes for me.” And then the door bell or phone rings, postponing again and again. Before we know it, another decade or more has passed.

We are delusional about our lives–Start today, tomorrow noon at the very latest.  I’ve already been to the land of a compromised brain and it is a Godforsaken place.  I’m still stuck there precariously living within my limitations, receiving punishing consequences if I rebel.

Will we be one of the lucky ones who suddenly dies peacefully in their sleep, self-sufficient until their last breath, life list completed in total?  What are the odds of that?

How about listening to that inner voice?  I can hear the resistance rallies revving up, all the reasons why you can’t do what you say you really want to do.  No need to answer me. It’s your life.

P.S. Here’s a sample refrigerator note.

Dear All,

I have come down with a rare form of L.M.N.O.P. and am quarantined for a bit.  Don’t bother to phone or text as my room doesn’t get the tower.  Take excellent care of each other and don’t worry about me.  I will be just fine.

 Love,

Your spouse/Sibling/Parent/Grandparent/Neighbor/Friend/Friend of a Friend…

Catz’s book, Tell Me This: Encouragement and Hope after Brain Injury, a pocket guide for athletes, veterans and civilians, is being published by Lash and Associates and will be released this coming winter.

What Brain Injury Survivors Want You To Know

Today’s blog is compiled by The ‘Amazing’ Brain Injury Survivor Support Group of Framingham, Mass., one of 34 BIA-MA support groups around the Commonwealth of Massachusetts. It was then published in Lost and Found, A Survivor’s Guide for Reconstructing Life after Brain Injury, by Barbara Webster, BIA-MA’s Support Group Leader Liaison. If you want more information about joining a support group, click here. 

What do  brain injury survivors really want you to know?

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem. If there is more than one person talking, I may seem uninterested in the conversation – but that is because I have trouble following all the different “lines” of discussion and it is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! and it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me, allowing me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience as well, trying not to interrupt, allowing me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory and know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time, it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. ( It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD, obsessive-compulsive disorder, but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional issue as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Every single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

Think A-Head Redesigned and Revamped, Coming to a School Near You

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Students get ready for prom. Do they know the dangers of drinking or drugging and driving?

Did you know that the brain contains 100,000 miles worth of blood vessels–enough to circle the earth four times?  The brain contains 100 billion neurons, which are cells, known as gray matter, that process all of the information in your brain. Each neuron is connected to other neurons by up to 40,000 synapses. This means that the number of connections in the brain outnumbers the number of stars in the universe.

Did you know that the brain is made up of 75% water, and uses 20% of the oxygen in your body at any given time?

What a powerful organ…one worthy of protecting, since it houses so much information and capability.  However, brain injuries are the leading cause of death and disability in young adults and teenagers. The recorded instance of concussion, car crashes and substance use by this group is increasing. So, what can be done to enlighten students and give them knowledge, allowing them to make better choices for their own safety?

The Brain Injury Association of Massachusetts has a solution. Think A-Head is a dynamic, school-based program that has been teaching students to avoid risk-taking behavior and develop healthy living habits for nearly 20 years. This curriculum is tailored to the age of the students and to the specific needs of the school and its community. The program offers a core curriculum with amendable activities based around the following issues:

  • Brain Injury: General knowledge of the brain, brain injury, high-risk groups and behaviors
  • Drugs and alcohol: Breaking down drugs to include depressants, stimulants, inhalants and prescription pills and the affect on the teenage body and brain
  • Impaired driving: How alcohol affects driving, the dangers of impaired driving and the increased risk of sustaining a traumatic brain injury (TBI)
  • Seatbelts: The benefits of using them and the detriments of not using them; statistics on usage and common misconceptions about seatbelts
  • Concussions: Focusing on sports concussions, signs and symptoms, and information on what to do in the case of a suspected concussion; the roles of coaches, student athletes, teachers and school systems in this process

www.bigstockphoto.com

You may have experienced this program in your school before. However, BIA-MA has completely revamped the program to be a more effective educational and preventative tool. Your students will experience new presentations with interactive question-and-answer sessions to make sure they are really consuming the information. In addition, a brain injury survivor speaker will be on hand to discuss their experiences with brain injury and to also pose situational questions to the students. When reality is standing before them, how do they respond?

Thanks to a generous gift from the Sarah W. Rollins Charitable Trust, BIA-MA is able to offer this redesigned Think A-Head program at a discounted fee of $75 for the first program and $25 for each additional program held at your school on the same day. Think A-Head aims to inform and engage students and supply them with applicable knowledge so that they can make more informed choices during a most impressionable time in their lives.

Science has proven that neurons continue to develop throughout an individual’s life, at least in some parts of the brain. In addition, fresh cells are actively involved in the formation of memory. This organ should be protected, as it serves as the “engine room” or “control room” for all of your body’s faculties. An individual’s choices affect the brain on a regular basis.

To bring the Think A-Head program to your school in Massachusetts, visit the webpage today to book a program (or more!) and learn more about how educating students about the risks and impact of brain injury helps them make better choices. To book your program immediately, click here.

Mommy of a Miracle: I learn something new every day

Kristin Olliney

Kristin Olliney

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. 

I have learned a lot in the past month about the public school system.  I learned that the public school system is like a wooden-shape puzzle.  Most pieces fit in the puzzle.  Some pieces require a little more effort to fit in than others.  With every puzzle there is always that one piece that no matter how hard you try to shove it into the mold, it just does not fit.  Isabella is that unique puzzle piece that does not fit.

As I mentioned in my previous blog about Isabella’s first day of school, I moved to our current town specifically for its school system.  It ranked very well on the state report card.  The special education program was known to be fantastic.  I had such high hopes and I honestly never expected it not to work out.  The first week of school was horrible.  Fighting, kicking, screaming, biting, panic attacks etc., just to walk out the door of our home.  Never mind the car ride, the 15 minutes of school and then the aftermath which consumed the rest of the day.  The second week of school is when the stress, anxiety, aggression and panic attacks took on a whole new level.  It was affecting her sleep, therapies, treatments and it became medically necessary for Isabella to have a home-based program.  School is not supposed to be this traumatic.  I quickly realized that just because a school system has a great ranking and a fantastic special needs program, that does not mean that it is the right or appropriate fit for Isabella.

I was left with a few options:

  1. In-home tutoring:  I was hesitant to go this route as we had already done that (with little success) in another town.  Isabella needs more than in-home tutoring can offer.  Also, with in-home tutoring the expectation is that the child will go back into the public school. I already knew that was not working.
  2. In-home tutoring until out of district placement could occur: I started calling and researching a variety of specialized schools.  The problem I ran into is that most programs were for emotional/behavioral conditions or cognitive conditions.  Isabella doesn’t fit into any one category because she has a brain injury.  While she has emotional/behavioral conditions, they are a result of a brain injury so therefore can’t be treated the same.  The few schools that do specialize in brain injury either do not accept Isabella’s age group or they accept her age group but currently do not have any attending.
  3. Home school: Several providers had mentioned home schooling to me.  I knew nothing about it.  I decided to research the laws, potential curricula, talked with other parents who home school and to find out as much as I possibly could.

I spent many stressful days and sleepless nights trying to figure out what to do.  I felt like I was between a rock and a hard place with not many good options.  The more I researched home school, the more I realized this was the best option for Isabella.  The laws, the policies, the application, finding and submitting a curriculum–it all overwhelmed me but I knew that she would thrive in a home school program.  I knew that I could teach Isabella because I would go to the end of the world for her if I had to.  After all, I know her better than anyone.

I started looking into therapeutic playgroups to get Isabella the socialization she needs.  I was referred to a facility that would offer Isabella the one-on-one that she requires.  They will help Isabella cope with her anxiety, teach her social skills and eventually be able to interact with another peer in a very structured environment.

I submitted my home school plan which included an online curriculum coupled with a few other programs to supplement it. Isabella already has existing outpatient therapies, in-home behavioral and soon a therapeutic playgroup.  I received an approval shortly after submitting.

I can honestly say this is the right decision for us.  Isabella loves “school at home.”  That twinkle in her eyes that I haven’t seen in years–that twinkle is there.  The excitement Isabella has every morning when she asks what we are going to learn today–that is how it is suppose to be.  Learning is not supposed to cause panic attacks, regression and aggression.  The public school experience has caused Isabella to regress so much.  It is going to take some time and a lot of work to get Isabella back on track to where she was prior to the start of the public school.  I know together we can get Isabella back to where she was and moving in the right direction.

I am not saying public schools are bad.  I live in a town that has a great public school.  I am saying that not every child fits into that cookie cutter mold.  It wasn’t appropriate for Isabella at this time.  Will I home school forever?  Honestly, I have no idea.  What I do know is that this is the right choice for us right now.  One day at a time.

“Two roads diverged in a wood, and I- I took the one less traveled by, And that has made all the difference.” Robert Frost