Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the how their family life has changed since Isabella’s brain injury. Read Isabella’s entire story on our website.
When Isabella suffered a brain injury, every aspect of our family life suddenly changed. While life is not perfect or the way I had planned, it still is great. Often, people do not understand why things are different because on the outside Isabella looks “fine.” Isabella’s ABI (acquired brain injury) is an invisible disability. Below are some of the ways that our family life has changed.
1. Our day-to-day life is different: As summer approaches, I think of how we spent our days prior to Isabella’s ABI. We were either at the beach, swimming in the pool, going to cookouts and parties, taking day trips, going to the zoo or hiking. Prior to Isabella’s ABI, she was a lot more independent. Since her ABI, our summer days are spent at speech therapy, occupational therapy, physical therapy, aquatics therapy, in-home behavioral therapy, hyperbaric oxygen treatment, infusions, meetings and doctors appointments. Isabella also requires help with daily tasks, such as getting dressed, brushing teeth, using the bathroom, etc. Our downtime has to be carefully planned out and revolves around Isabella and where she is mentally at any given moment. I have to consider her level of anxiety, aggression, mood, fatigue, etc when trying to plan an outing or activity.
2. Others perceive us differently: Isabella looks like a typical seven-year-old child. She has an ABI, which is an invisible disability. Isabella is a completely different child than she was before her brain injury. She struggles on every level behaviorally, emotionally, psychiatrically, cognitively, verbally, etc. While others may be in denial that anything is wrong, I have come to terms with the fact that Isabella will never be who she once was. Accepting this early on has helped me tremendously. While Isabella was robbed of the life she was supposed to have, she is working really hard. Her future will be different, but she has a future I believe will still be bright – it just won’t be how I may have imagined it.
3. Isabella’s behavior can be unpredictable: Isabella gets out of control. She can drop to the ground, kick, scream, hit and have a full out tantrum. Other times Isabella says and does the most inappropriate things. Isabella’s brain injury causes her do things that she can’t control. Having someone laugh, point, yell at either of us or add rude commentary does not help the situation. Isabella doesn’t need to be physically disciplined or ridiculed. She needs support, understanding and positive reinforcement. As a Mommy, I am doing everything that I can to help her and when we are judged, it makes us feel worse.
4. Isolation occurs: As we continue on this journey, I have realized that everyone else’s lives are moving on and in many ways ours are not. Most of our family and friends have stopped inviting us to parties or events. At first I was relieved because I didn’t have to explain why we couldn’t be there. It hurts when the invitations stop because it feels like family and friends have forgotten about us. It’s hard to hear about graduations, birthday parties, holidays and other get-togethers. While Isabella may not ready for those types of situations, there will be a day when she will. I am so thankful for those few people in our life that continue to invite us in hopes that one day soon things will change.
At the end of the day, do I wish things could be different for Isabella and our family? Yes, of course I do. I wish nobody had to suffer from a brain injury. That being said, the reality is a brain injury is not going to magically disappear. I am helping us embrace the life we now have and to make the best of what we have – it’s all in how you look at it. I am thankful for every moment and day I have with Isabella. The outcome could have been so much worse. Brain injury changes every aspect of your family. It doesn’t mean your life is over, it means that you need to accept that a new life is about to begin.
Heidi and her husband David re-located their family from California to Massachusetts to teach and live at a boarding school. Both teachers, they work with children on a daily basis. However, their lives changed on Sept. 8, 2004 when their second child, Jacob, then 2 1/2 years old, fell from a third-story screened window onto a concrete courtyard below.
“When he first fell, a student saw it happen and ran to tell David,” Heidi explains. “Jacob then had a seizure during his ambulance ride, and the doctors immediately put an intra-cranial pressure device in because of the nature of his injury.” Jacob spent 17 days on a ventilator in a drug-induced coma so that his body and brain could heal with minimal movement.
Some early evidence of Jacob’s injury included an inability to speak due to the ventilator, and his cognitive abilities were not what they had been before the accident. “Jacob knew his colors before the accident. In therapy following the accident, he did not,” says Heidi. “He knew who his parents were, but he was lethargic and acted much like a four-month-old for a while. We called him a Raggedy Ann doll!
“When he left UMASS, we went to Franciscan Hospital for Children. I remember the first time I was able to discipline him again. Jacob was sitting in his crib, doing something I had told him not to do. —‘Jacob I asked you to stop, I need you to stop.’ Who would have thought disciplining a child would have been a great thing, but it was a sign of his recovery.” Jacob spent three months in in-patient rehabilitation at Franciscan. He was then in early intervention for six weeks. He received outpatient physical, occupational and speech services for two more years, as well as services in the school system. Even now, nine years later, he continues to receive speech therapy, and he just recently discontinued adaptive physical education.
Currently, Jacob is an 11-year-old fifth grader with hemiparisis on his right side, as well as some learning issues. “He had a neuropsychological exam three years ago by a woman who works with people who have brain injuries, and it was determined that he has some recall and retention issues,” says Heidi. “Anything with numbers, he remembers. But, if he reads a book today and I ask him questions about it tonight, he can’t recall specifics from the book.” Jacob is also fatigued by the end of the day, and is dealing with the emotional piece including impulsivity and anger. “Sometimes we aren’t sure if it’s the brain injury or just his age, since he’s moving into his teenage years,” says Heidi.
She says that her biggest frustration is that people do not realize how easily brain injury can happen. “Why don’t more people wear helmets? Or keep a couch away from a window?” Heidi and David advocate for helmets in activities like riding bicycles and scooters and skateboards. She wants people to become more aware of how easily brain injuries can happen.
She also gets frustrated by people’s perception of individuals with traumatic brain injury (TBI). “When people hear brain injury they automatically think, ‘quadriplegic living at home forever,’ when they could be highly functional individuals who just need our patience,” explains Heidi.
“Many injuries can be prevented. When your child is arguing with you about wearing a helmet, because it isn’t the cool thing to do, talk to them about the alternative. Of course you need to keep the discussion age appropriate, but as a parent, you do not want to be standing over your child in PICU, wondering what their future will be like. We have been there. We have seen other families’ realities – what life is like for them now. We were lucky – Jacob is highly functioning, and many people would never know he has a TBI. But you may not be so lucky. Brain injuries can happen very easily. Take precautions!”
This blog is part 2 of “Brain Injury Myths DEBUNKED.” To see part 1, click here.
There are unfortunately hundreds of myths about brain injury which you can find all over the Internet. This information is not only misleading, but for brain injury survivors, it can be just plain hurtful. Keeping that in mind, we came up with some top myths, some of which were inspired by some great conversation on our Facebook and Twitter pages, so thanks to all who comment and keep the conversation going! We’ve been posting these myths on Facebook and Twitter for the last few months to help increase awareness, so here are the final five all in one place.
This is unfortunately one of the most common myths. Because a person cannot tell if someone has a brain injury just by looking at him or her, many believe the individual is “fine” weeks, months and years post-injury. However, that person is likely involved in various types of rehabilitation and typically experiences a number of issues, including headaches, brain fatigue, and sensitivity to noise, among others. In school-age children and student athletes, teammates and even teachers, parents and school administrators often have their doubts about how long these issues can affect an individual who has sustained a concussion. Students may need extra time on homework, frequent breaks throughout the day and other accommodations weeks, months and even years after the injury.
Whether you’re wearing a helmet for contact sports like football or hockey, or sporting one when riding a bike, motorcycle or horse, there’s no doubt that a helmet is one of the most important types of protective gear you can wear. Wearing a helmet can save your life. “Helmets provide a 63 to 88% reduction in the risk of head, brain and severe brain injury for all ages of bicyclists.” However, no helmet can guarantee a person won’t sustain a brain injury. Helmets were created to prevent skull fracture and death by a blow to the head – they were and are not equipped to prevent all brain injuries. With that said, it can most definitely reduce the risk. To ensure you protect your head and get the most out of your helmet, make sure it fits properly.
This myth is one that many survivors find especially irritating. The brain is complex. There is so much we’ve discovered in the last decade – even the last year or two – about the brain and brain injury, but there is still so much we do not know. What we do know is that every brain injury is different, and despite all the research that has been done about rehabilitation and the “road to recovery,” there is no time limit on progress. Survivors continue to make progress days, weeks, months and years after the injury. To say no more progress will be made more than a year after the injury is completely false.
While children often recover faster after an injury, they do not when it comes to brain injury. Some believe this is because a child’s brain is still developing and sustaining a brain injury before the brain finishes maturing could cause serious issues.
This is such a common myth among those who might not know what a brain injury truly is or how it can affect a person. Every brain injury is different and every brain injury survivor is different. No case is exactly the same. Although a brain injury can leave survivors with devastating effects – like issues with senses, retention, memory, and even walking and talking – many people go on to make progress in leaps and bounds, re-learning everyday, important skills and eventually reintegrating into the community. Many survivors return to full- or part-time work, volunteer or find new hobbies. As Madeline Uretsky, who suffered two concussions within months of each other, says, “Just because life is different than it used to be, doesn’t mean it isn’t as great—you just have to find a way to make it as great, even if you have to do it differently.” We couldn’t agree more.
Today’s blog was written by Ryan Farrell, who suffered a severe traumatic brain injury during a cheerleading exhibition in 2010. Ryan currently shares her story with teens through BIA-MA’s Gateway Program.
Ever since my injury, many dates have stuck in my head, for better or worse. Now, May 25, 2013 (this Saturday), is another one I will not be able to remove from my mind.
The 67th Commencement Exercises for the Class of 2013 are being held at Marist College this Saturday. I, however, will not be sauntering proudly across that stage with the individuals with whom I began my collegiate journey back in August 2009.
When I returned to school in August 2011, after one full year “off,” with various therapies, doctor’s appointments, and other procedures taking the place of my classes and sorority meetings, it was an inundation of varying emotions – happy and excited to be back at school, yet nervous, and at times, frustrated that studying, exams, and completing any other assignments in a timely manner was such a challenge. I am very fortunate to have a wonderful advisor for my major, along with an amazing advisor in special services. The other incredible individuals with whom I have been lucky enough to work since my return are quite exceptional, as well!
So, I will not be receiving my diploma this Saturday, but I will be receiving it May 2014!
If I had to state just one of the many things I have learned in the three years since my injury, it is this: It doesn’t matter WHEN, or how quickly, you complete something. What really matters is how you do what you set out to do!
It has been said, many times before: “Good things come to those who wait.” Well, then I know only the BEST things will be coming to me!
Our Facebook page is a place for conversation, information and of course, support. We love when everyone gets involved in the conversation and shares advice. Last week, we asked our Facebook fans to share their best advice that they would give to a caregiver or loved one of an individual with a brain injury and we got a lot of great responses. The best caregiver tips and advice we get are from those who have experience providing care to brain injury survivors and survivors themselves! Check out 10 tips for caregivers that our wonderful Facebook fans shared with us in their comments:
1. “Err on the side of caution after a concussion when considering return to school and return to play timelines.”
2. “Be patient with me please, and learn who I am while I relearn who you are.”
3. “Take it one day at a time.”
4. “Recognize that being better today does not mean being better tomorrow. Gains are not necessarily permanent. And even when someone does seem to be improving, don’t act as [if] everything is ‘all better’ because that can make the patient feel terrible when they need more help.”
5. “Don’t say ‘I do that all the time’ in reference to forgetting stuff. It’s not the same! It doesn’t make us feel better; just makes it worse.
6. “Don’t keep asking ‘Do you remember…?’ People would ask me that all the time in the first few years after my accident, and it truly made me feel stupid when I didn’t remember.”
7. “Provide patience, quiet time, understanding and love. The brain takes time to heal and cannot be rushed. Walk away if you feel upset or feel like yelling. Noise, like yelling, only causes the brain to shut down and the mind to go blank. We know we aren’t the same and are bewildered by this stranger who takes over and for that we are scared and sorry. Give us time and we will start coming back to you. Sometimes we come back better! It is a long and winding road for all.”
8. “Be sure to include the family when setting goals/creating a care plan.”
Today’s blog was written by Ryan Farrell, who suffered a severe traumatic brain injury in 2010 (exactly three years ago today) during a cheerleading exhibition. Ryan currently shares her story with teens through BIA-MA’s Gateway Program.
1,096 days – 156 weeks – Time really does fly … THREE YEARS have gone by!
If anyone had ever told me 1,097 days ago that I would suffer, survive and THRIVE after a brain injury, my response would have been quite simple: “A BRAIN INJURY?!? Why would I have sustained a BRAIN INJURY?” Well, it has been three years since I suffered a TBI and although I never would have imagined something of that magnitude would have ever happened to me, it has made me a stronger, more steadfast, more determined woman. Every morning when my alarm clock goes off (no matter how early it starts to loudly chime), I pop out of bed, ready to take on the day!
My determination, in all that I do, has been strengthened even more than before my injury. I have truly discovered who my true friends are – the ones who will always be there for me, no matter what. Not only have I discovered my true friends, but I cannot reiterate enough how significant family is. My family – immediate, extended, and sorority – are the fabulous individuals who will be there for me, no matter what.
Even on the days when I get frustrated, when nothing seems to be going the way it should, I try my hardest to stay positive. Do I think about the things which were taken from me on April 18, 2010? Of course I do. But, do I waste my time and energy getting frustrated and upset? No, I do not. I am HEALING, I am STRONG, and I am ALIVE!
As Winston Churchill once said: “Success is not final, failure is not fatal: it is the courage to continue that counts.” Surviving, persisting, THRIVING – that’s the way to go through life!
Although the official Brain Injury Awareness Month is over, our advocacy and awareness efforts are not. Our social media and advocacy #BrainInjuryAffects campaign has been so successful that we have decided to continue it. Through the campaign, we have spoken to and met so many incredible survivors, family members, caregivers and brain injury professionals and have been able to share their stories on Facebook, Twitter, this blog and our website. We hope you’ll continue to share your stories with us! Today, we’re sharing brain injury survivor Scott Doane’s story.
It was 1967 and Scott Doane was just seven years old, riding with his father and sister in their station wagon when their vehicle got broadsided by an 18-wheeler whose brakes gave out.
“My sister saw the whole thing,” Scott explains. A bystander, who turned out to be a marine and EMT, ran over to help. Scott’s sister was screaming “Where’s Scott?” which made those helping at the accident scene look for him. They saw tufts of Scott’s hair behind the front seat where he was pinned.
“The marine saw that I was unresponsive and choking on my tongue. He began to give me mouth to mouth and saved my life,” he says.
Scott, his sister and father were taken to the local hospital. His sister received 20 stitches and his father had a collapsed lung and broken ribs. Scott needed more care so he was taken to Columbus Children’s Hospital in Ohio where doctors discovered he had a significant frontal lobe brain injury and his right side was paralyzed. To keep the brain swelling down, doctors gave him penicillin and put icepacks all around him. Scott was in a coma for three weeks and was not expected to survive. Despite the doctors’ beliefs, he did.
After three months, he was finally released from the hospital. He was paralyzed on his right side and spent six months in a wheelchair. Scott was given no formal rehabilitation for his brain injury other than regular checkups and working with his parents at home. Their family moved out of Ohio and after that, there was no follow up on his brain injury, leaving Scott with many questions.
Just three years ago, Scott found himself still desperate for answers about the accident and his brain injury, so he asked his father to give him his medical records so he could find out more. He went to get a baseline MRI, started seeing doctors and getting tests done to find out more about the extent of his injury.
Today’s post was written by Jami Stelman Uretsky, the mother of Madeline Uretsky, an Ambassador Speaker for BIA-MA who is still recovering from a concussion she suffered in October 2011. Jami is an active participant in the brain injury and concussion conversation and provides information and support for caregivers and parents on her Facebook and Twitter pages. To contact Jami, e-mail firstname.lastname@example.org.
When my daughter suffered a concussion in October, 2011, I had no idea what to expect, or how life would change. I was used to various injuries because she was an avid athlete, but nothing could prepare me for how her concussion would affect our family. The following are just a few of the things that have helped me to get through this.
1. Spend time with him or her. When brain rest was prescribed for my daughter, I decided that I would spend all of my time with her. After all, she was scared and lonely, and I could not let her suffer alone. I was lucky enough to be able to stop working, so I lied in bed with her daily. When she was asleep, I would do things around the house, catch up on phone calls, watch TV, or read, but when she was awake, I was next to her. We talked, I read to her, and we played quiz games. I felt that just having me by her side helped her get through the difficult time of brain rest.
2. Educate Yourself. I spent most of my waking time educating myself about her concussion. She had so many symptoms that were so severe, that she was basically just bedridden for 3 months. I felt that in order to help her, I had to learn about what was going on inside her brain and how the various symptoms were affecting her. I also continue to research the many treatment options available for her. Although at times there seems to be nothing that will help her, there are other times when there seems to be several things to try. Continuing to educate myself and research these options has led us on a seemingly never-ending path of appointments, all of which have helped her in different ways.
3. Find support. The support that I received from other parents who have children with severe concussions was probably the most helpful thing in getting me through my daughter’s recovery. I often felt so alone and so hopeless that being able to discuss these feelings with others who were also going through this was incredibly helpful to me. I would spend hours and hours on the telephone talking to other moms, and my daughter and I would also meet other survivors and their moms for lunch when she was well enough. Both my daughter and I continue to reach out to other parents and children in the hopes that we can also provide support to them.
4. Probably the most important advice I can give to a parent or caregiver of a child with a concussion is to be prepared for a lifestyle change. There is really no way around this, unfortunately. After awhile, you really do get used to things like keeping the shades closed, turning out the lights when your child enters the room, keeping all noise to a minimum, realizing that your child can manage to do only only thing per day, and understanding that more often than not, plans must change at the last minute to accommodate your child’s symptoms. The list of how our family does things differently now is endless, but these changes are the only way to ensure that my daughter is given the best chance for recovery.
While my daughter continues to recover from her concussion, I still follow each of these tools for recovery – it has all become an important part of my daily life. I sometimes sit back and think about the different path my life has taken, and how I could never have imagined it being this way, but it is this way, and just accepting that, and doing what I need to do, has made it easier to navigate.
From art and painting to yoga and meditation, there are a number of alternative therapies brain injury survivors find helpful. Yoga has therapeutic benefits and it’s a great form of light exercise for those who may not want to hit the gym for weights or cardio. Many brain injury survivors find yoga is most of all, a great form of relaxation, which can be a wonderful way to start or end the day. Additionally, yoga can help you to increase your flexibility, strength, self-confidence and self-esteem. Thinking about starting yoga? Consider these tips first.
1. Talk to your doctor. Before starting any new kind of exercise regimen, you should always have a conversation with your doctor. Additionally, if you have specific needs, your doctor may be able to recommend a yoga instructor or program to you that could work with your hospital or other brain injury survivors.
2. Get the right gear. If you’ve been cleared by your doctor to start yoga, make sure you get the right gear. Yoga clothes, which don’t need to be by a specific brand – they can even be comfortable sweats, a yoga mat and water bottle are all necessities. Also, get a pair of yoga socks or go barefoot for yoga.
3. Take a beginner class. Start with the basics! Learn the basic moves and master those first, before moving on to anything intermediate. Your local yoga store, such as Lululemon which offers free classes on weekends, may offer classes right in the store!
4. If you’re concerned about anything, speak with your yoga instructor. Let him or her know your concerns and ask for feedback if needed.
5. Be open to it. Many people are fearful of looking “silly” or not knowing what they’re doing. Don’t worry about how you look and focus on the moves, breathing and enjoying this new activity. Remember, anything new takes practice. The instructor is there to help you, too.
6. Don’t do anything you aren’t comfortable with. Poses range from the most basic to the challenging and extreme. Do what you’re ready for and don’t push yourself. Stay at your own pace.
7. Warm up before every session. Basic stretching for as little as 10 or 15 minutes will help warm up muscles.
8. If practicing yoga at home, make sure you do so in a quiet, clutter-free area where it’s easy for you to focus.
Looking to get into yoga or other alternative therapies, but don’t know where to start? Attend the 32nd Annual Brain Injury Conference on March 28th at the Best Western Royal Plaza Hotel in Marlborough, Mass. where there will be workshops on alternative therapies including yoga and art! Click here to register.