With the changing of seasons, it is also time for change at INDEX. After three years as the Blog Editor, I will be leaving INDEX and moving on.
In the beginning
When first approached by INDEX to coordinate their new blog, I had no idea what a blog was; I had only heard the term. But since I loved to write, I thought it would be fun and maybe a new challenge. I was also encouraged by the staff at INDEX who were genuinely excited about the new venture.
I just never realized in the process how much I would learn.
The stories
There were the family members sharing their experiences of anguish and triumph. The community organizations addressing challenges with creativity and a commitment to change.
And most important, there were the people with disabilities themselves who inspired us with their personal stories. I may have worked in the field for over 30 years, yet I am still humbled by the perseverance and ability of those who truly make a difference.
With gratitude
To our guest bloggers and all those who were interviewed, my sincere appreciation. To the staff at INDEX who were such a pleasure to work with, you will be missed.
To you, the readers, thanks for listening.
Over the summer the Blog will go on hiatus with a new format introduced in the fall.
This week we are pleased to introduce Kristin Olliney and her daughter Isabella, who suffered brain damage from sudden acute encephalitis at four-and-a half years old. This is the final blog in our series from the Brain Injury Association of Massachusetts (BIA-MA) and was written by Lauren Byrnes, Marketing and Communications Associate.
Photo courtesy of biama.org
The morning of Nov. 25, 2010 was like any other Thanksgiving Day for Kristin Olliney and her four-and-a-half-year-old daughter Isabella. However, it was on that day that their lives changed forever.
“She was fine all day,” explains Kristin. It wasn’t until 7:00 that night that Isabella started “screaming” that she had a migraine and needed to throw up. By 10:30 she was confused and dehydrated. Twenty-four hours after Isabella had complained of a migraine, she was “crashing and literally dying” at the hospital, explains Kristin. Isabella had come down with sudden acute encephalitis.
“Everything happened in an instant,” she says. Isabella was in a drug-induced coma and then her own coma. “When she finally woke up, she was like a newborn,” says Kristin. “She couldn’t lift her head up.”
The brain damage caused by sudden acute encephalitis has caused Isabella, who was once advanced for her age, to be developmentally and behaviorally delayed and to have seizures, tics, migraines, anxiety, symptoms of ADHD, mood disorder, aggression, OCD, sensory issues, depression, learning disabilities, visual and audio misperceptions, cognitive disorder and separation anxiety. Additionally, she could not walk or even move her arms and legs at first.
Despite doctors’ beliefs, Isabella survived. “My daughter is the one-in-a-million to survive and she truly is a miracle,” says Kristin.
Isabella spent nearly a month in the hospital, which included the time she was hospitalized for sudden acute encephalitis, as well as in-patient rehabilitation. Kristin says that she was never told how much rehabilitation would be needed or of the long journey they had ahead of them.
“I thought when we got out of the hospital, in six weeks life would be back to normal,” she says. Brain injury “is a life-changer. It’s not like a broken bone.”
After Isabella got out of the hospital, she started receiving out-patient therapy, including speech, occupational and physical therapy. She now receives behavioral therapy as well. Isabella has also had 80 hyperbaric oxygen treatments, a therapy which Kristin believes all brain injury survivors should have access to. The hyperbaric oxygen treatments have helped Isabella sleep through the night, remember life before her injury and with empathy,” Kristin says.
“She has made progress,” she says. “She’s so determined.” Although doctors wanted to put her in a wheelchair, Isabella refused and instead, learned to walk again. A year ago, she couldn’t put four words together and now she’s able to form sentences.
“She’s come really far … but she has a long journey ahead of her, but we’ll take that together, too,” says Kristin, who refers to her and her daughter as Team Isabella. With Isabella’s determination, their “team” of doctors and the combination of therapies and medication, Kristin has hope that one day her daughter will be able to do everything she dreams of, like being a “pet doctor.”
“I just want her to be happy and for her to do all the things she wants to do,” says Kristin. “I’m not settling for her. She works so hard [every day] which makes me work even harder.”
The Brain Injury Association of Massachusettsprovides support services to brain injury survivors and their families, offers programs to prevent brain injuries, educates the public on the risks and impact of brain injury, and advocates for legislation and improved community services.
This week we are pleased to introduce Joanne Coggins, a stroke survivor whose personal story inspires us all. This is the third blog in our series from the Brain Injury Association of Massachusetts (BIA-MA) and was written by Lauren Byrnes, Marketing and Communications Associate.
Photo courtesy of biama.org
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.
Despite the challenges she faces, Joanne remains determined to regain the skills she lost. She now receives speech therapy through a unique program with graduate students and is learning to form sentences—something she was unable to do for the first three-and-a-half years after her stroke. “She’s been able to communicate so much more,” Karen explains. “Her expressive language is so much better.”
Karen works with her mother on other skills, such as cooking, writing checks and verbal exercises even while they’re in the car driving to appointments. Joanne remains determined not to let her stroke get in the way of her goals. She’s even learned to kayak and ride a bike, so she can ride with her granddaughter to the park.
Joanne’s granddaughter, who is learning to read and write, inspires her because they can both learn together. “It motivated my mom to have someone to go through it with,” says Karen.
Although the family has a long journey ahead of them, Karen says they are hopeful. They want to see Joanne drive again, speak more fluently, be able to read out loud to her grandchildren and write on her own without having to copy the words.
“We don’t concentrate on the things she can’t do,” Karen says. “The more she learns the more independent she becomes.”
Although Karen says she knows they can’t change their circumstances, they want to change people’s lack of knowledge about brain injury. “I want people to know how important it is to know about brain injury,” Karen says. “One out of six people each year are affected by brain injury and if it’s not you, it’ll probably be someone you know.”
The Brain Injury Association of Massachusettsprovides support services to brain injury survivors and their families, offers programs to prevent brain injuries, educates the public on the risks and impact of brain injury, and advocates for legislation and improved community services.
This week we are pleased to welcome Madeline Uretsky, the second guest blogger in our series from the Brain Injury Association of Massachusetts (BIA-MA).
Photo courtesy of biama.org
Madeline is a BIA-MA Ambassador Speaker, still recovering from a concussion she had in 2011. Today she shares her tips for navigating concussion recovery. This blog was posted on their site on march 18, 2013.
When I began my day on October 13, 2011, I was a happy-go-lucky sophomore in high school looking forward to my afternoon soccer game. When I finished my day, I was a high school student who had suffered a life-changing concussion that would keep me out of school for a year. I have learned many things about myself and about my brain during this time, so I have decided to share some of my experiences of what has helped me to navigate my way through this. Although I am still suffering from many symptoms 24/7, I can say that there are some things that can help along the way.
1. Brain Rest – I was put on complete brain rest for the first three months of my concussion. I did not watch TV, read, use my computer, exercise, or use my cell phone. In fact, I did absolutely nothing but lie in bed and sleep. I know that this sounds almost impossible to do, but when you have a concussion, you really don’t feel well enough to do those things anyway, so for me, it was not as hard as it seems. I can say that the brain rest did provide me with a good foundation for my recovery, and to this day, when my symptoms become a bit too much for me, I take some time to rest and recharge my brain.
2. Eating habits – Another recovery tool that was very helpful in clearing the fogginess that I had been feeling was to change my eating habits. When I was able to start reading, I asked my mom to buy me a book called “The Lean,” by Kathy Freston. I read a chapter each day, because I would become more symptomatic as I read, but I decided to change one eating habit daily, and before I knew it, I was eating things like broccoli, sweet potatoes, pumpkin, nuts and seeds, tofu, salmon and beans. I cut out all sugar, processed and fried foods, meat and poultry. In addition, I started to drink a lot of water each day. I noticed that after about a month, not only had I lost some weight, but my general fogginess had cleared by about 90%. I also just felt so much better, so I continue to eat this way.
3. Find a hobby – Once I had finished my three months of brain rest, I was anxious to do something – anything that I could do without exacerbating my symptoms. Since I still was suffering terribly from all of my symptoms, finding something that I actually could do was quite a challenge. Again, I asked my mom if I could help her in the kitchen. I really was not a fan of cooking, but there wasn’t much else I could do that didn’t require too much of me physically or mentally. So, that became my new hobby – helping my mom cook dinner every night. While I’m still not a fan of cooking, I did feel proud when each meal was done. I recommend finding some sort of hobby to fill the time and give a sense of accomplishment.
4. Find support – Finding other teenagers who were also recovering from severe concussions was another useful tool for me. It was not an easy task, but I managed to find several others like me, who had missed a good amount of school and were still at home recovering. We were able to commiserate with each other about how we were feeling, things we would do to pass the time, and how no one could possibly understand what we were going through unless they were going through it themselves. I am happy to say that I have made some very good friends in the US and Canada, and we continue to provide each other with friendship and support.
5. Education – My last recovery tool that I found very important was education. I was so confused about all the different things that I was feeling – headaches, sharp shooting pains all over my head, fogginess, ringing in my ears, light and noise sensitivity, balance problems, memory loss and so many other things – that I had to learn about what was happening to me. When I was up to it, I would read whatever I could, and talk to whomever I could, about what a brain injury was all about, and what recovery from brain injury would entail, so that I could give myself the best chance for recovery.
Recovery from a brain injury is a long and difficult process, but if you arm yourself with some helpful tools, and explore various treatment options, you will find that although extremely slow, there can be some relief.
The Brain Injury Association of Massachusettsprovides support services to brain injury survivors and their families, offers programs to prevent brain injuries, educates the public on the risks and impact of brain injury, and advocates for legislation and improved community services.
For a listing of all support groups sponsored by the Brain Injury Association of Massachusetts, call the Information and Resources Department at (508) 475-0032or visit our website.
The Brain Injury Association of Massachusetts provides support services to brain injury survivors and their families. It also offers programs to prevent brain injuries, education on the risks and impact of brain injury, and legislative advocacy for improved community services.
Photo courtesy of biama.org
Today’s blog was written by Sandra Madden, brain injury survivor and administrative assistant at the Brain Injury Association of Massachusetts, dated March 29, 2013
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.
To see other BIA-MA Blogs go to “An Instant Can Change Your Life Forever” at https://braininjuryma.wordpress.com. The blogs offer inspirational personal stories, information & tips for caregivers and survivors.
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.
There are wonderful museums & sporting events in Boston for those of all ages and abilities to experience.
The following are links and contact information to plan your outing. Be sure to call numbers listed beforehand to address your individual access needs.
Museum Venues
Museum of Science Everyone can participate at the MOS equally in the excitement of science and technology learning.
Accessible Museum Offerings This very handy tool displays many cool accessible offerings at the MOS! Use the filters on this link to display museum offerings that meet your individual access needs.
Access to Art Program
Interactive tours designed for groups with physical and cognitive disabilities, dementia, or those undergoing medical treatment. Also offers individual tours with care partners for those with Alzheimer’s and those undergoing cancer treatment.
Beyond the Spectrum – Adventures in Art for Children with Autism Special program designed for children ages 8-12 on the autism spectrum, including Asperger’s syndrome, accompanied by parent or caregiver. Program meets the 1st Saturday of each month from 10:30am – 12pm. Call 617-369-3303 for further information.
Hand’s Reach to Art Throughout the year, a selection of gallery tours, performances, and demonstrations are presented in American Sign Language (ASL) or are sign-language interpreted. On the second Wednesday of each month there is a tour in ASL at 6 pm.
For general access information, call 617-267-9300.
For MFA‘s Access Program Tours, contact Hannah Goodwin at 617-369 or Valarie Burrows at 617-369-3302.
Offers information on ASL programs, assistive listening devices, quiet spaces and times. The Exhibit Accessibility Guide uses icons as a guide to navigate the museum based on child’s learning style.
The Morningstar Access Program offers children with special needs the opportunity to visit the museum at a time when guests are limited to 100. During these times, children and their families can explore the Museum with less concern about infections and large crowds. Pre-registration required.
For further information call 617-426-6500
Free Fun Fridays
Thanks to the Highland Street Foundation, be sure to take advantage of Free Fun Fridays to explore museums and cultural venues across the state for FREE this summer with your family. Fridays run from June 28th-August 30th featuring parks and venues such as the Museum of Fine Arts (July 12th), Boston Children’s Museum (Aug. 2nd) and others!!
Sporting Event Venues
Boston is one of the finest sport’s towns in the country. Enjoy rooting for your favorite team.
TD Garden ADA Seating – home of Boston Celtics and Bruins
TD Garden ADA line 617.624.1754
For Accessible seating call:
Celtics – 617.523.6050
Bruins – 617.624.1950
Disability Accessible Seating at Local Arenas & Stadiums
This MNIP Fact Sheet, created by Patrick Gleason, offers handy tips and strategies for those buying tickets for accessible seating at arenas and stadiums in New England.
This week we are pleased to introduce guest blogger, Patrick Gleason.
Boston’s TD Garden crackled with emotion on April 21, 2013. The hometown Bruins were looking for their first win since the bombings at the Boston Marathon just six days before.
Fans were out in force, many wearing black and gold “Boston Strong” shirts that mimicked the team’s jersey colors. The Bruins had already punched their ticket to the playoffs, but needed positive momentum for the postseason.
As I looked out from my manual wheelchair in Balcony section 307 celebrating my 33rd birthday with my longtime friends Nicole and Michael I thought, there’s nowhere else I’d rather be.
Experiences With Disability Seating
I’m a veteran of attending events through disability seating. It has been a regular part of my life since the Americans With Disabilities Act (ADA) became law in 1990. Red Sox games, rock concerts, comedians; I’ve been fortunate enough to see them all.
I bring up those examples because society hardly ever talks about the idea that individuals with disabilities may want to attend these events. The opportunities to attend are there, and they may be easier than you think.
ADA Guidelines
First, the ADA mandates that disability seating must be available in every seating area and price range, so patrons can choose their location. Second, virtually every venue has a dedicated ADA line where you can order tickets directly from a live operator.
Third, many venues only allow disability seating to be sold by the box office, so you don’t have to worry about scalped or fraudulent tickets.
Lastly, many venues don’t sell the row in front of disability seating, so views are often unobstructed.
Absolutely Worth It
It can sometimes be a maze to find your seats. For the Bruins game, we parked in an accessible spot, took three separate (but clearly marked) elevators, got searched by security, and sat down about ten minutes before puck drop.
Was it a hassle? Maybe a small one. But after watching the B’s pitch a 3-0 shutout and literally give the shirts off their backs to first responders in attendance, I didn’t mind at all.
This week we welcome back Nora Nagle, ADA and 504 accessibility coordinator for the Museum of Science, Boston.
The Museum of Science shares a lifelong appreciation of science, technology, engineering, and math (STEM) with over 1.5 million diverse visitors each year. We hope that you will join us!
Universal Design
The Museum understands that true accessibility goes way beyond compliance with architectural access codes. For over 25 years, the Museum has been committed to Universal Design (UD), the design of products and environments for use by all people, to the greatest extent possible.
In the late 1980s – well before the Americans with Disabilities Act — the Museum began to incorporate universal design principles in creating its exhibits, shows, and programs.
Accessibility at the Museum
Here are some of the Museum’s accessibility features:
Wheelchair accessibility
Multisensory interactives
Audio labels
Captioning
Sign Language interpreters, with 2 weeks’ notice
Sighted guides, with 2 weeks’ notice
Family restroom
Loaner wheelchairs and scooters
Assistive listening Devices
As a person with a disability myself, I understand visitors often have individual questions or concerns. We welcome such questions and will try to make it easy for you to find the information you need.
Finding Accessibility Information
Accessibility at the Museum of Science is not limited to compliance with the Americans with Disabilities Act. We strive to create an environment that is inviting, engaging and accessible for everyone. If something is accessible, it should be easy to approach, reach, enter, interact with, understand or use. That is our goal.
We understand the need to “know before you go” and have made accessibility information available in a variety of ways:
The Museum has an accessibility page on its website. This page contains a search engine that enables visitors to search for the accessibility features desired.
If you prefer to speak with a person, or have questions that the website does not answer, please call me directly at 617-589-3102 (voice or relay). We can discuss your concerns and find answers to your questions.
Is accessibility an issue for you when making plans? For many of us, the answer is yes, whether it be due to our own disability, or physical issues for a family member due to aging.
Well the good news is Boston offers many accessible cultural attractions and fun sporting events for those who require accessibility.
Coming Up This Month
This month we will feature two previous INDEX bloggers, Nora Nagle and Patrick Gleason, to share their personal and professional experiences with accessibility.
Thinking about exploring and discovering what the Museum of Science has to offer? Be sure to read next week’s blog by Nora Nagle, the Museum of Science’s Accessibility Coordinator. The Museum of Science offers an accessible building, parking and programs/services for people with disabilities. Nora will answer questions and concerns for all visitors needing accessibility.
The following week we will feature Patrick Gleason, an avid and passionate fan of the Red Sox, Bruins and Celtics. Patrick will share his story of attending a wheelchair accessible Bruins hockey game at the TD Garden. You may not know that the TD Garden, home to Bruins hockey and Celtics basketball games, offers ADA wheelchair space seating for patrons with disabilities and their companions.
New ADA Ticket Requirements
In addition, the ADA 2010 revised requirements for Ticket Sales went into effect March of 2011.
These new and updated requirements address ticket sales, prices, identification of available accessible seating, purchasing multiple tickets, ticket transfer, and hold and release of tickets for accessible seating. This provides the opportunity for Boston sports fans with disabilities to enjoy the American pastime of rooting for their favorite teams.
Join us this month to learn more and get ready to make plans to have some fun in the months ahead.
Throughout the month of April, we’ve heard from members of the Massachusetts Act Early state team who have shared heartfelt stories about why identifying autism and other developmental disorders matters to them.
Who We Are
Our team is made up of parents, medical professionals, educators, autism resource specialists, human services program managers, public health practitioners, university faculty and many others.
We lead an interdisciplinary, collaborative statewide effort “to educate parents and professionals about healthy childhood development, early warning signs of autism and other developmental disorders, the importance of routine developmental screening and timely early intervention whenever there is a concern.”
What We Do
Our statewide coalition works to strengthen state and community systems for the early identification and intervention of children with signs of developmental disabilities, such as autism spectrum disorders.
The coalition envisions a future that uses a family-centered model that overcomes geographic, socioeconomic, cultural, and linguistic barriers to assure equal access to developmental screening for all children in the Commonwealth. This mission and vision drives every action Mass Act Early takes to make a critical difference in the lives of children and their families.
Our current goals include:
Public outreach to increase awareness of autism spectrum and related disorders.
Training for early childhood, health care, and educational professionals.
Shortening the wait times between screening and diagnosis as well as diagnosis and intervention.
Developing culturally competent autism screening materials and training curricula for early childhood educators, community health centers and pediatric practices across Massachusetts.
How We Do It
Our web site at www.maactearly.org contains free downloadable materials about healthy developmental milestones in young children for families, early childhood professionals, and health care providers.
Most of these materials were developed by the Centers for Disease Control and Prevention (CDC). The CDC developed them for the national “Learn the Signs. Act Early” public awareness program, of which the MA Act Early initiative is the local state chapter.
Additionally, the CDC‘s online Autism Case Training (ACT) course covers identifying, diagnosing, and managing autism spectrum disorders.
There are three modules, which can be taken separately or together. They are based on real-life scenarios and include up-to-date information, illustrative videos, and pertinent references and resources.
Free continuing education credits (CME, CNE, and CEU) are available for each of the modules.
Our Priority: Cultural and Linguistic Equity in Massachusetts
The MA Act Early state team has set a priority of reducing early identification disparities for families who are from culturally, ethnically, and linguistically diverse backgrounds, particularly if their primary language is not English.
Early identification may be important to any of us. It could be due to skyrocketing prevalence rates, a beloved family member living with an autism spectrum disorder, a sense of profound professional purpose to improve the quality of life or any number of other reasons.
Whatever raises your own concerns about early identification, please join us in making a lasting difference. Positive outcomes are within our reach!
About the Author
Elaine Gabovitch, MPA serves as state team leader for the Massachusetts Act Early program and as one of 25 national ambassadors appointed by the Centers for Disease Control and Prevention (CDC) to promote the “Learn the Signs. Act Early.” public health program in Massachusetts. For more information, visit www.maactearly.org . She is also the Director of Family and Community Partnerships for the UMass Medical School-Eunice Kennedy Shriver Center, family faculty in the Shriver Center’s LEND program, and an instructor in the UMMS Department of Family Medicine & Community Health.
