Keep Moving Forward: Children with Brain Injuries

[Allie]: I guess it's kind of a big thing to hear, and I didn't really comprehend it totally. I thought, "Oh yeah, I have a brain injury. That sounds serious." But I thought I'd be better sooner. [Ken]: When you have somebody laying there and they can't respond back, your mind goes so many different directions. [Randy]: You leave the hospital with a broken child--you don't know how severe. You don't know what you're left with. [Kathy]: As a parent, you just want to make everything better, and we couldn't do that. [Narrator]: Brain injuries occur in a variety of ways and can happen at any age. It is particularly devesating when a child is injured. According to the Centers for Disease Control, brain injury is the most frequent cause of disability and death among children and adolescents in the United States. No matter how the injury occurs, brain injuries may result in lifelong changes and challenges for children, their families, and the community. [Joan M. Gold, Ph.D.]: Children deal with being different. Many times, people with brain injuries can become very impulsive. They can have outbursts--very difficult to hold back and take time to think-- hard to sustain focus. If there are any physical difficulties they can't be involved in athletics anymore. There are many, many things that children have to contend with along with the fact that they are children. [Karen Thomas, C.B.I.S]: Many students going back to school have to reidentify who they are, As the student goes from class to class, grade to grade, elementary to junior high to high school, they constantly have to retell the story and reeducate. [Narrator]: Although each brain injury and its effects are different, what all brain injuries have in common is the way that they change the lives of the families involved forever. [Brandon]: I'm Brandon, and I'm 11 years old. Some of the things I like at school are leaving, break, free time. In many ways, Brandon is a typical 11-year-old boy. He likes video games, riding his skateboard, and playing the drums. But there is something very different about Brandon, brought on by an accident at a local park when he was a young child. [Randy]: It was 2 days after his fourth birthday. We went to just get away. It was a nice day. As we were playing, a little league team came to practice. [Brandon]: My dad was holding me, and I was watching my brother throw a tennis ball to the wall, and I just got hit. [Randy]: One of the children hit the ball, we heard "heads up," and the ball came out of the air--about 120 feet-- and hit Brandon on top of his head, causing a depressed skull fracture. [Narrator]: After a week in the hospital, Brandon was sent home with very little indication of what long-term impacts his injury might have. However, it didn't take long for Mary and Randy to notice changes in their son's behavior. [Mary]: When he first came home, you could tell his behaviors were a little more intense-- his reactions to the word "no," or if it was bedtime. You had your normal four-year-olds, but he took it way past there almost immediately. Then he would get violent. [Brandon]: When I was younger, I used to put holes in the walls. [Mary]: Brandon would make verbal threats towards me-- [Randy]: --towards a lot of people--anybody. [Mary]: --and that was not Brandon's nature. He was a very mellow, funny kid. So I called the pediatrician and said, "Something's not right here." The pediatrician said, "I think maybe we need to get a neuropyschological eval on him." [Narrator]: Agression and implusive behavior are common symptoms that may occur as the result of a brain injury. Brandon's neuropsychological evaluation revealed cognitive and behavioral changes indicative of possible long-term consequences. [Mary]: Just going through one day is really hard for Brandon. Without his medication, he couldn't function. With the medication, he can function, but a lot of things are modified for him. [Brandon]: When I get mad I swear and throw things. [Mary]: You have a child now that you didn't think you'd ever have. It really--maybe it's harder on the moms-- I know it was harder on me to accept the change. It has impacted our older son tremendously. I think sometimes he doesn't want to have friends over because he gets embarrassed by his little brother. We try to explain to his friends that his brother has a brain injury. I don't think they really get it. I would say a big challenge is trying to find a balance with all of your children, and you really don't realize the amount of time you spend with the one who has the brain injury. It's all of that time spent away from the other one. [Narrator]: Brandon's parents have worked hard to ensure that he gets the education and supports he is entitled to receive in a special education classroom that can accomodate his needs. [Mary]: One thing we did learn in dealing with the school: we got tossed into the special ed world, and we didn't know the rules, and nobody tells you anything, and we didn't know what questions to ask because we didn't know how the game was played. [Randy]: It's weird because the school takes over the meetings, and you basically feel like you're at their mercy. So a lot of times, your child will get sevices, but won't get the proper services unless you're there and you know the rules and how to tell them, "This is what I want." [Mary]: As the years have progressed, we're much more comfortable realizing we are an important member of that team, because we know Brandon. We know what works and what doesn't work. [Narrator]: For Brandon, the work continues outside of school as well. Utilizing Medicaid home and community-based waiver services from the New York State Office for People with Developmental Disabilities, Brandon receives service coordination, respite and residential habilition services, and behavioral intervention. [Mary]: It's a home-based service where they send-- we have a school psychologist and a social worker who come out to the home, and they include the whole family in it, to help de-escalate the behaviors. [Brandon]: I'm trying to work harder not to get mad. [Mary]: One thing we find with brain injury is that there are peaks and valleys. He can be doing so well for so long, and then I don't know what happens, but then we come crashing down. And that's really when you want your supports. You need more and you need to ask for more. We've learned that; we've tried to do it on our own. We've realized that we need help. [Narrator]: Mary and Randy have started a number of support groups for parents of students with disabilities to help them advocate for their children. At home, they tirelessly focus on meeting the needs of their entire family, hoping that the future will bring good things to all of them. [Brandon]: What I want to do when I grow up is ride dirt bikes. [Mary]: Our dreams for Brandon would be that he can be all that he can be, whatever that is. He can do a lot; he has a lot of potential. [Randy]: Hopefully he'll have a family and will be in control of his destiny. [Allie]: Hi, I'm Allie. I'm 17 now, and I had my injury when I was 15 years old. [Narrator]: Prior to her brain injury, Allie was a teenager living a very busy life. [Stephanie]: Her life before the injury consisted of school and tons of extracurricular activities. [Allie]: I've been dancing since I was 2, so I take 5 dance classes a week. I used to do Tae Kwon Do. When I started high school, I switched to track instead. So I would go to school, I'd go to track, I'd come home to eat and do homework, and then go to 2 dance classes. [Narrator]: But all of that activity was suddenly put on hold for Allie and her family 2 years ago. [Drew]: Allie was hurt in a dance class. She ended up getting thrown onto her head on a hard-wood floor. [Allie]: They just said, "You have a good ol' concussion," and sent me home. [Drew]: We kind of thought, like everyone, that it would be a few weeks and she'd be totally fine. That's what most of the physicians said, but as it went on she was really out of sorts. She would forget things in 20-30 seconds and had a brutal headache. [Stephanie]: She couldn't handle the stimulation of a lot of different things coming at her at once. It just increased her symptoms and made her more confused, and the headaches got much worse. She spent the summer, from June to September, in her room, in a dark room with the lights out. [Narrator]: Concerned that Allie's symptoms did not lessen over time, as the doctors had suggested, Drew and Stephanie began doing their own research. [Stephanie]: We just kept seeking information. We stumbled upon the New York State Brain Injury Association, which was incredible, and the FACTS Program really helped guide us at that point. [Karen Thomas, C.B.I.S.]: FACTS is a program that's offered. It stands for Family Advocacy Counseling and Training Services. FACTS coordinators offer family support, information, referral to different systems and programs. We offer free trainings and education. [Narrator]: Working with Allie's FACTS coordinator enabled Stephanie and Drew to put together the right supports for Allie to return to school. [Stephanie]: We had her come at the beginning of both her 10th and 11th grade school years to come in and meet with all of her teachers. [Mr. Green]: All of the staff were there to familiarize them with what's going on with Allie, and what TBI is and what it means and the potential for what people could do help her. [Narrator]: The FACTS coordinator conducted a training for the entire school team about brain injury and its specific effects on Allie. Based on input from her doctors and neuropsychologists, the school implemented what's called a 504 plan for Allie. [Mr. Green]: A 504 plan is a plan used to ensure and identify accomodations that a student needs in place in order for them to be successful. [Allie]: Learning new things is very different than it used to be. It's really frustrating because I used to be the kid who would sit in class, soak it in, and not really have to study to get As. Now I have work really hard to take notes and take a lot of time to study things. [Mr. Green]: She has to actually put forth the effort--a lot of effort now. [Allie]: My English teacher, who I have for World Lit this year, had me in freshman year also, so he's really good. He understands how I was before and that it's not that I'm not as smart, it just takes more to get there. [Stephanie]: Mr. Farry is in the resource room and he's been phenomenal for Allie. He is the person she can go to and say, "I need help here. This teacher isn't understanding me." "This teacher isn't giving me extra time." And he will make sure that that happens. [Mr. Farry]: I like the fact that Allie is self-advocating. She needs to say how she feels. We all need to know exactly where she's at so that we don't smother her and give her too much. But we also make her know that we are here when she does feel she needs the extra help. [Stephanie]: For Allie, learning how to advocate for herself has been a real challenge. She never had to ask for help before. [Drew]: Part of what makes is hard is especially when she's in the outside world, she tries to put on the face, and she tries to be happy. Everyone says, "I saw Allie; she looks great and says she's doing great." [Allie]: It's one of those things--I don't have a cast or a broken wrist, so people don't see it when they look at you, so they'll just say, "You're looking better," and things like that. It's frustrating because I'm not going to get mad at them and say, "Actually, I'm not better." It's just hard to hear. [Mr. Green]: Some people may look at her and see this beautiful young lady and think that everything is "normal," and she's really trying to find these new pathways in her brain so that she can make accomodations for herself. [Stephanie]: I think the outside world doesn't see what it costs her to put on the face when she's out in public. It costs her a lot. [Narrator]: Allie works with a cognitive rehabilitation therapist outside of school to rebuild pathways within the brain and improve processing skills that were lost or damaged in the injury. With so much effort now going into her studies and rehabilitation, Allie has little time for the extracurriculars and social life she once enjoyed. [Allie]: I used to get all of my social life with the activites. At dance I'd see people. I didn't go to camp, so I didn't see any of my camp friends. It's hard to keep in touch with the people that I used to know. [Mr. Green]: She's not as bubbly and outgoing all of the time. Her center's a little more focused, and she's got 3 or 4 people that she deals with. That's apparently enough. [Mr. Farry]: Her friends have really stepped up. I've been impressed that these teenagers have said, "We understand this has happened to you, but you're still our friend." "You're still in our classes, and we're going to be here for you all the way through." [Narrator]: For now, the work toward rehabilitation continues, but Allie and her family remain hopeful that the future will be promising and pain-free. [Drew]: She has had an amazing attitude. I know I personally would not have had near this attitude if I had a constant headache for 20 months. [Stephanie]: We both are just in awe of her determination to push through. [Allie]: I guess I'm a motivated person so that probably helps. [Stephanie]: I think our hopes for Allie at this point are for her to reach her new potential, whatever that will be. [Allie]: I always, even before the injury--I like lots of stuff. I'm all over the place. I'd love to be on Broadway, but if that doesn't work out, now I'm more interested in the brain, so I think I'd like to go into something medical, maybe cognitive rehab therapy because that's helped me a lot. [Sara]: Sara, 21. [Narrator]: Six years ago, Sara was an outgoing teen with a great sense of humor. She loved music, traveling with her friends, and eating lobster. But in an instant, life came to crashing halt. [JoElla Gasse, M.A.]: How did you get your head injury? [Sara]: Car accident. [Ken]: Sara was 15 years old when she had her car accident. She was coming back from Syracuse, from field hockey camp. That day, Ken and Kathy got a call from the local hospital indicating that Sara was being airlifted to the O.R. They rushed to the scene, anxious to find out about their daughter's condition. [Kathy]: She was all hooked up to monitors and to tubes, and just lying there with bandages on her head. It was just very, very upsetting to us--very, very upsetting-- how else would you explain it? [Ken]: It was just--we were in shock. [Kathy]: Yeah, we were defintely in shock. [Narrator]: Ken and Kathy stayed by their daughter's bedside as the days passed, waiting for answers, struggling with questions no parent wants to ask. [Kathy]: She was in a coma. Is she ever going to come out of the coma? Can she see and hear? We were thinking of all of the day-to-day normal things that you take for granted. We didn't know if she'd ever be able to walk again. Would she survive this? [Ken]: What we would do is pretty much sit there and hold onto her hand because she couldn't talk and her eyes were swollen shut. So we were just holding on. The doctors would come and give us updates. Our hope was to get us through that day and get to the next day. Keep on moving. [Narrator]: Sara was in the hospital for a month before being transferred to a coma stimulation program. [Kathy]: When Sara was no longer considered critical, they got her all set up there and immediately started assessing her and put her on an intense therapy program. [Ken]: She still couldn't talk, and she had a feeding tube. It was all getting her body to move again and go from there. [JoElla Gasse, M.A.]: When you first had your accident, were you walking? [Sara]: No. [JoElla Gasse, M.A.]: What were you doing? [Sara]: Wheelchair. [Kathy]: They also told us it's going to baby steps--slow progress. It took a year before we heard her voice. [Ken]: And-- [Kathy]: I think just seeing what she was doing and the obstacles she was overcoming gave us a tremendous amount of strength. It's just amazing the things that they put them through in these rehab centers, but the results are so positive. [Narrator]: After 7 months in the rehabilitation center, Sara was ready to come home. But she would still need a great deal of supports and services just to get her through the day. [Kathy]: We had a busy household during the day before Sara went back to school, with therapists coming in and out of the house, nurses, home health aides, people from the county--the central assessment-to talk about funding and the therapies and the agencies. It was very, very confusing. I just took notes and tried to keep everything as organized as I could, with a calendar on-- [Ken]: We had 2 calendars. [Kathy]: Well, we have several different calendars; one is Sara's calendar [Ken]: We're on one side, and you open the door and there's Sara's calendar, and every day was filled with something--all day long. [Narrator]: Eventually, it came time for Sara to return to school. Although the experience would hardly be the same for her as it was before. [Kathy]: It was about a year and a couple of months after her accident that she did return to school in a wheelchair with a one-on-one aide. We carved out an educational plan for her. She received speech therapy in school, occupational therapy, physical therapy. Even though Sara wasn't verbal in the beginning, people would come up to her and she could give them high-fives and communicated that way. It was just very heart-warming to see her back in school and accepted for Sara. [Narrator]: Today Sara continues to progress, participating in a cognitive rehabilitation day program and outpatient therapies. [Joan M. Gold Ph.D.]: When Sara was first referred to us, I read the neuropsych report that was done on her, and I said to myself, "Oh my gosh, this poor young lady. She is so severly injured, I don't know if there's any way we're going to be able to help her." [JoElla Gasse, M.A.]: What were you like when you first came here? [Sara]: Sleepy. [JoElla Gasse, M.A.]: Did you have a lot to say? [Sara]: No. [JoElla Gasse, M.A.]: Did you want to say a lot? [Sara]: Yep. [JoElla Gasse, M.A.]: What happened; why couldn't you say a lot? [Sara]: Talking was off-limits. [Joan M. Gold Ph.D.]: And even though she could barely say a word, she was there with us, and we saw she was understanding what we were saying, and we saw her spirit, and we saw her determination, and we said, "Wow, this is the best of all possible worlds." It's a supportive family who has learned and knows what they're doing with her, is open to learning more, and a young woman who says, "I'm going there no matter what." And that's basically how she impressed us, so we decided to take her. [Narrator]: Sara continues to make great strides, increasing her capabilities and building on her skills each day. Most importantly, her perseverence and sense of humor have always stayed with her and help to inspire others. [JoElla Gasse, M.A.]: I heard you took a cooking class. [Sara]: Terrible. [JoElla Gasse, M.A.]: What was bad about it? [Sara] Cooking is not-- [JoElla Gasse, M.A.]: It's not your thing? [Sara]: No. [JoElla Gasse, M.A.]: What would you like to be doing? [Sara]: Eating. [JoElla Gasse, M.A.]: Oh, you'd rather eat it than cook it? [Sara]: Yeah. [Kathy]: Her bubbly personality, her sense of humor have gotten her through so much. [JoElla Gasse, M.A.]: So you laugh a lot? You have the sense that you're number 1? [Sara]: Yes, obviously. [Kathy]: It's still Sara; it's still Sara. [Joan M. Gold Ph.D.]: Everybody respects her, everybody likes her. Her sense of humor comes through. [JoElla Gasse, M.A.]: When you walk into the room, do you come in all quiet? [Sara]: No. [JoElla Gasse, M.A.]: What do you do? [Sara]: This is my entrance. [Kathy]: When you're in it every day, you don't always see it. It isn't until someone comes in to visit Sara or hasn't see Sara in a while, that they notice the progress. [Ken]: So we're kind of following her. She's leading us, and we're supporting her, and we've got the support from everybody around us. [Narrator]: The families of Sara, Allie, and Brandon face unique challenges. As they continue on their own roads to rehabilitiation, they're happy to share their insight and offer advice to those newly coping with brain injury. [Allie]: Advice that I would give to somebody who just found out they have a brain injury would be to stay positive and keep moving forward, but not to belittle what they're doing. [Brandon]: Ask for help when you need it. [Kathy]: Educate yourself as much as possible. [Sara]: Stop, breathe, take the time to think and plan. [Drew]: Definitely reach out to the State Brain Injury Association. They have a lot of resources. The second thing I would say is you need to really be assertive or aggressive about advocating for your child. [Mr. Farry]: Meet the special education teachers, social workers, psychologists, and the regular education teachers. Keep them informed about what's going on. [Stephanie]: Keep the dialogue always open with school, not only with administration, but also with each individual teacher. [Mr. Green]: Put yourself in their shoes and say, "If I was dealing with this kind of a situation, what would I need right now?" [Mary]: Networking is important for support, and taking time for each other-- for the mom and dad to go on a date is important. [Randy]: A date? [Mary]: Uh huh. [Karen Thomas, C.B.I.S.]: Spending time with other families who have been there and really know what you're going through is invaluable. [Ken]: You have to have a lot of patience. You have to do anything for your child. [Joan M. Gold Ph.D.]: I would have to tell you that it is a long journey, but that there is hope. [JoElla Gasse, M.A.]: Do you give up? [Sara]: No, keep coming at it. [JoElla Gasse, M.A.]: Do you ever give up? [Sara]: No. [Karen Thomas, C.B.I.S.]: These families, dispite all of their struggles, are held together by this love and this drive that no matter what their day may bring or no matter what their future may look like, that they just keep plugging away with smiles on their faces and with a sense of hope in their heart. [Sara]: I can take a chance! For more information about brain injury visit the Brain Injury Association of New York State's website at www.bianys.org. Keep Moving Forward

Meet Brandon, Allie, and Sara — and their families. Learn how they live day to day with the effects of brain injury.

Posted on BrainLine June 14, 2011.

This project was developed by the Brain Injury Association of New York State in cooperation with the New York State Department of Health, supported by project H21MC06742 from the Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. This material is public domain. For more information, go to http://www.bianys.org.