Tag Archives: support

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.

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.

6th Annual BJ Williams Walk and Run Road Race is happening September 14th!

Bj and Karen from Mix 931

BJ Williams and Mix 93.1 FM’s Karen during the 5th Annual BJ Williams Road Race.

BJ Williams is the Manager of the Prevention Department  & Court-related Programs at BIA-MA, as well as a survivor of a traumatic brain injury (TBI) and founder of the Annual BJ Williams Walk & Run Road Race. Today in his first guest-blogging appearance, he will share how his life changed following his brain injury and why he felt it necessary to start an annual athletic event to raise awareness of brain injury.

Since I was three years old, I dedicated and lived my life to become a professional hockey player.  At age 16 I was fortunate enough to attend the National Sports Academy in Lake Placid, NY for high school.  Following my high school graduation, I spent time in Italy and in Boston playing hockey.  On July 28, 2005 before I was able to reach my lifelong goal, I made a decision that would have lifelong consequences.

During the summer of 2005 I landed a construction job working with a good friend.  On that sunny Thursday July 28 afternoon, my friend and I were driving home on the Massachusetts Turnpike.  My friend lost control of the Ford F-350 truck we were in, and being that I chose not to wear my seatbelt, I was instantly ejected from the passenger window of the vehicle.

When I awoke two days later at Baystate Medical Center I learned that everything I spent my life working for–my desire to be a professional hockey player–was gone.  During the days that followed I discovered the extent of my injuries.  I am deaf in my right ear, I’ve lost the ability to smell and taste, and I endured multiple skin grafts and suffered four skull fractures that needed a lot of time to fully heal.

The biggest injury was hanging up my skates forever….

My recovery from July 28, 2005 to today has not been easy.  From day 1 of the recovery I knew I had to take a different approach to life.  Late one night after hearing the story about Dick and Rick Hoyt, I began taking part in road races, triathlons, marathons and even Ironman events in an attempt to motivate myself to feel that my life was far from being over.

Since running in my first marathon in February 2007, I’ve craved the motivation even more.  The following year was the first annual BJ Williams Walk & Run Road Race.  The mission of the event was never to bring thousands of runners, but just to bring individuals to come and compete with the intention of supporting the prevention of brain injuries. In addition, I wanted runners and walkers who supported those individuals living with brain injuries and who wanted to raise funds for an injury that affects so many people in Massachusetts and around the world.

Runners take off during the 5th Annual Race

Runners take off during the 5th Annual Race

Since July 28, 2005 I set out to dedicate my life and career to preventing brain injuries and supporting survivors in any way that I can.  On September 14, 2013, the 6th Annual BJ Williams Walk & Run Road Race will once again host runners and walkers of all abilities to raise funds and awareness for brain injury. The only way the event will stop is if we reach the mark of raising $100,000.  Even then it will probably keep it going!

The 6th Annual BJ Williams Walk and Run Road Race will be on Saturday, September 14, 2013 in Longmeadow, Mass.  The event will feature a 5K Walk and a 5K Road Race, all to raise money for the Brain Injury Association of Massachusetts and the Joe Andruzzi Foundation! To register now, click here. ‘Like’ the Annual BJ Williams Walk and Run Road Race on Facebook!

The New Normal

Heidi Qua & her sons

Heidi Qua & her sons

Today’s blog is written by Heidi Qua, mother of Jacob and Eric. Her son Jacob suffered a traumatic brain injury, in 2004 when he fell from a third-story window. To read her entire story, click here.

A few days after Suspect Number Two from the Boston marathon bombings had been apprehended, I was speaking to a friend who lives in Virginia. “So, are things returning to normal now that the suspect has been caught?”  I laughed.  Normal? Things will never be normal again. We are entering a chapter of a “new normal.”

New normal is a phrase I used frequently when my then almost three-year-old son was discharged from the rehabilitation hospital, Franciscan Hospital for Children. In September of 2004 Jacob fell from a third floor screened window to the concrete courtyard below. He spent 19 days in NICU, 17 of which he was on a ventilator. Then we were moved to rehab where he, we, stayed for three more months.

When we were discharged, four days before Christmas, people assumed that we would be going back to our “old life.” They didn’t seem to understand that we couldn’t go back to our old life. My husband and I were trying to figure out our new life, our new normal. Rather than working full time, I was now shuttling my youngest child back and forth to therapies, and welcoming other therapists into our home.  I had to explain to my oldest son, Eric, who all these people were, and why his brother needed all this additional attention. We were trying to keep things normal for Eric, but even his life was forever impacted too.

As Jacob grew older, my new normal included monthly visits with different doctors – neurologist, physiatrist, or primary care doctor. The therapies continued, several times a week.  This is not what I call “normal.” As a young woman, when I thought about becoming a mother, I never thought “what pattern should we choose for my son’s AFOs (ankle-foot orthosis)?  Where can I buy shoes big enough to fit his AFOs?”  In fact, before Jacob’s accident, the world of rehab, therapies and AFOs was a world I had never given a second thought.

As much as I lamented my new normal, I realized I only had one option, and that was to accept it.  I actually started to appreciate our new life. Nothing was going to make Jacob “normal” again, and I was beginning to be OK with that. I fell in love with his funny little walk, or the way he throws a ball. Even now, at age 11, all I have to do is hear his walk and I know it is him. I realized quite quickly, back when he was in rehab, that Jacob is a hard worker. He never once complained about all the therapy he went through. To this day he is the hardest working guy I know. This past weekend he hiked over seven miles with a backpack on, carrying his camping gear. He fell down, 10 times to be exact, but got back up each time and kept going.

As we approach the nine-year anniversary of Jacob’s accident, I can honestly say I am content with my family’s new normal. I would be lying if I said I wish the accident never happened – no parent wants their child to suffer any injury, let alone a traumatic brain injury. That said, we have found victories in the small things, in the quietest of places, and we have learned to celebrate each moment with all three of our children, as we take this journey together.

Finding Support: Join a BIA-MA Support Group

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Today’s blog is written by Sandra Madden, brain injury survivor and administrative assistant at the Brain Injury Association of Massachusetts.

When I was diagnosed with Post-Concussive Syndrome, I did not understand what a traumatic brain injury was, let alone understand what a support group was. Then, it was suggested that I attend a support group meeting with a group called BABIS (Boston Acquired Brain Injury Support Group) – I wish to this day I could remember who suggested this to me, as I would bestow a very big hug upon this wonderful person. At BABIS, I felt understood, in ways my family and friends could never understand, and I felt a sense of appreciation for all that I still had, despite my brain injury.

I have found many benefits in joining a support group – there is a sense of belonging when a sense of isolation can be so dominant, long-lasting friendships are formed, and coping skills and other valuable lessons are learned. Even on the simplest level, being surrounded by others like you provides a sense of calm and belonging.

The Brain Injury Association of Massachusetts (BIA-MA) has over 33 support groups in the state of Massachusetts and these support groups serve survivors, family members and caregivers of all ages. The purpose of BIA-MA’s support groups is to provide support, information and social recreation opportunities. However, according to Barbara Webster, the Support Group Leader Liaison for BIA-MA, “The most important function a support group provides, the most important value, is finding out you are not alone.”

These support groups are both large and small, and the size of the group can drive the focus. Small to medium groups can address individual needs and issues while larger groups host speakers such as doctors and authors. “There are so many needs in the groups, trying to adjust and adapt, be understanding and be patient, yet meet everyone’s needs” is the focus of all support groups, says Barbara.

If you are newly diagnosed or have been living with a brain injury for some time, and you have yet to seek out a support group, I would urge you to consider contacting the Brain Injury Association of Massachusetts for a listing of the support groups in our state. I believe you will experience a sense of belonging and understanding, and if you are fortunate, you may make some friends along the way.

For a listing of all support groups sponsored by the Brain Injury Association of Massachusetts, call the Information and Resources Department at (508) 475-0032 or visit our website.

#BrainInjuryAffects A Family – Three Generations

karenkellyandfamily

It was Oct. 13, 2008 when Karen Kelly received a call that would change her and her family’s lives forever. She was told that her mother, Joanne Coggins, who was visiting a friend in North Carolina, had a staph infection from dental work she had weeks earlier and was going to need surgery for acute bacterial endocarditis. Doctors needed to remove a growth on her heart which was caused by the acute bacterial endocarditis. During surgery, a piece of the growth detached and traveled to her brain, causing her to have a stroke.

Karen and her sisters rushed to North Carolina to be by their mother’s side. Because of the stroke, Joanne lost her abilities to speak (termed aphasia) and eat and had no strength to be able to walk. The right side of her body was also affected.

Because Joanne was being treated in a North Carolina hospital, staff expected her to receive care at a nursing home or acute rehabilitation center in the state, despite Karen’s wishes to take her home to Massachusetts. The judge granted Karen temporary guardianship of her mother, who was unable to communicate on her own behalf, so that she could be transported to Massachusetts for care.

Joanne received occupational, physical and speech therapy. She learned to swallow and eat again—both enormous accomplishments—and was able to regain enough strength to walk. Joanne now lives at home with a 24-hour caretaker. However, her aphasia continues to be a challenge.

“Everything she can do we’re so grateful for,” explains Karen. “Over time she has learned to compensate [speech] communication skills by learning different ways to communicate.”

Regardless, Joanne’s aphasia is a constant struggle. Joanne is aware of what is happening around her and knows what she wants to communicate, but is unable to find the words, which can be incredibly frustrating for her. “It really upsets her,” Karen says.

Read the rest of their story here.

A Guide To Taking Care of Yourself

“The care you give to yourself is the care you give to your loved one,” said a caregiver. Absolutely the easiest thing for someone to say and the hardest thing to accept is the advice to take care of yourself as a caregiver. It is often hard to see beyond the care tasks that await you each morning.

What is shown by study after study is that caregiving compromises health. About 60% of caregivers show signs of clinical depression, and caregivers take more prescription medications, including those for anxiety and depression, than others in their age group. Reluctance in asking for and accepting help is a major barrier to getting necessary respite and support. Who has time to think about breaks when there is a diaper that needs to be changed? Seventy-five percent of caregivers in America are women, some taking care of spouses/partners, some adult children taking care of parents, some parents taking care of adult children. What does taking care of yourself mean, why is it so hard to do, and how do you do it?

Support. Support and coping comes in many forms-prayer, talking to family, friends or professionals, saying “yes” to offers of help, taking walks, reading a book, eating hot fudge sundaes. But most caregivers end up withdrawing from friends and family and feeling isolated and as if no one understands. Support groups can be an important source of understanding and connection.

Guilt. Guilt that “I should” do this or be able to do it, guilt that your loved one won’t get as good care if you aren’t doing it, guilt that something will happen if you are away, guilt about having a good time when someone else is not. As there is no “perfect parent,” there is no such thing as a “perfect” caregiver. And you are not selfish to sometimes think about yourself and your needs and feelings. Although caregivers feel guilty when they get angry or frustrated, these feelings are ok and a way to know how well you are coping. “How can I say it is difficult when I really love this person?” questioned the husband of a client.

Setting limits. Learn to ask for help. The often-heard question, “Is there anything you need?” has but one answer: Yes. “Yes, I need a meal, I need someone to stay here so I can go out, I need some time by myself, I need flowers, I need help in the garden, I need some groceries.” Learn to say “no” to requests that are draining rather than nurturing, such as hosting holiday meals. You can still make choices about your life and what is right for you and you do still have some control.

Your Body. Not getting enough sleep is a major cause of illness and stress in caregivers. Exhaustion is one of the main complaints, leading to irritability and then inappropriate anger which then leads to more guilt. Talk with your physician about medication for either yourself or your loved one to help with sleeping through the night. Know the limits of your own endurance and strength. Make sure you have regular check ups and that those “little concerns” about your health are looked into. Exercise is even more important as it gives you a break, combats depression and helps you maintain health. When I talk with caregivers, one of their fears is worrying about what will happen to their loved one if something happens to them. Worrying doesn’t help. Taking better care of your health does.

Education. Learn as much as you can about the illness so that you can understand what is happening. Attend a workshop or support group, not just for emotional support but also to learn caregiving tricks to make caregiving easier. You can’t know it all; this is a job you weren’t trained to do. Contact someone who can help you connect with community resources and use them.

Emotional Health and Respite. Taking care of yourself may mean dealing with family problems. How can you make your siblings pull their weight? Possibly you can’t, and learning how to have a family meeting or work around them is essential for survival. One family actually has a chart and marks off what each does so no one can say, “You aren’t doing your share.” It is easy to become overwhelmed, thus the need for breaks. One caregiver told me that she deals so much better with her husband when he has been at day care, because when he comes home, she is not already frustrated by him. Without breaks, you begin to question yourself, feel inadequate and experience burn out. Caregivers are often mourning the loss of the person “who used to be.” Grief and loss need to be acknowledged.

One of the stressors of caregiving is seeing no end to the situation. Having a life and connections outside of caregiving helps you to maintain perspective, so that caregiving doesn’t become one’s only reality. You might be interested in the FCA’s Taking Care of YOU: Self Care for Family Caregivers, a guide to assist caregivers in facing day-to-day challenges.

Meanwhile, your best defense is a sense of humor. Find people or situations to laugh at daily. It refreshes the soul and renews your spirit.

 logoUsed with permission of Family Caregiver Alliance, National Center on Caregiving. For more information, visit www.caregiver.org or call (800) 445-8106.