Choices. Often, choices are good. But sometimes, as a parent of a child with Down syndrome, I must choose between two bad options.
My daughter is 13. In addition to Down syndrome, she has scoliosis, or a curve in her spine. She also has sleep apnea, where the back of her throat closes when she sleeps. Sleep apnea causes her body to wake her so she can breathe normally. But waking up so much makes her sleepy all day. The simplest treatment for my daughter’s form of sleep apnea is to sleep on her stomach to keep her throat more open and help her sleep better. The treatment for scoliosis is to wear a Boston brace. It’s a hard plastic device that gently pushes on her rib cage to keep her spine from curving more.
But wearing a Boston brace and sleeping on her stomach together add up to a sleepless night for my child. We work on it. We try to add time in the brace. We try to keep her from flipping on to her back as she sleeps. But after weeks of waking many times a night for both of us, I’m right back to the newborn days of 3 AM feedings and 4 AM diaper changes. My daughter falls asleep on the beanbag chair at school. I nearly fall asleep in the car line for school pick-up. No one is happy. Something must give.
We must make a choice between these two treatments, weighing the short term impacts and the long term impacts. Without the brace, the spinal curve may progress over time. If it does, my daughter may need spinal surgery. It’s a big “if”. But wearing it means she gets a terrible nights’ sleep, every night, and so do I. It feels too hard to weigh the choice between sleep now and the fear of possible surgery in the future. But the immediate need for more sleep wins, and we ditch the Boston brace.
We go for the sure thing -more sleep- and keep our fingers crossed that the curve in her spine doesn’t get worse. It’s a terrible choice to have to make. And there are no do-overs, no second chances. My daughter now sleeps well, but I still toss and turn some nights, second guessing our choices. I worry about possible surgery in the future. I wonder if we tried hard enough to make it all work at the same time. Did we make the right choice?
Young Adult Panel at 2013 Autism Consortium Symposium
On a chilly November morning, I took the Green Line train over to the Joseph B. Martin Conference Center at Harvard Medical School for the annual Autism Consortium Symposium. This isn’t the first time I have attended the research symposium, but this past year is one that I will never forget. There were the usual sessions around the latest and exciting cutting-edge findings in autism research from the giants over at Harvard and MIT, but a panel of 3 remarkable young adults with autism having a conversation about their transition to adulthood – “In their Own Words” ¬– left me feeling inspired and energized. The moderator opened with introductions from the panel – Michael is at Mitchell College for Sports Management; Kush is at UMass Lowell pursuing a degree in Civil Engineering; and Darcie is in the Threshold Program at Lesley University. They chatted briefly about their work experiences. Michael talked about his first job as a baseball coach and when he had the opportunity to work in the classroom as a City Year member. Kush explained how he is part of a team of researchers testing the chemical properties of packaging materials for solders. Darcie expressed how she loves working with animals and children, and the time she was “forced” to answer the phone as part of her job. With a constellation of experiences that led them to where they are today, the most powerful words spoken to a 100+ crowd of researchers, providers and parents were the advice and wisdom they had to share. On to topic of friendships, Kush noted it got easier as he got older since people were “willing to accept differences and not make a big deal out of it.” When offering advice to teens about transitions, Michael said to “find your strength and go for it!” Darcie asserted, “keep your options open because you are going to make changes in this world,” while Kush concluded, “use your supports because you can’t do it alone,” and “surround yourself with a great team of people.” Perhaps, the most insightful perspective for me was when the issue of bullying was mentioned, and Kush said of his offenders, “it was due to a lack of understanding, and it was for them to deal with, not me.” These incredible young adults had the audience grabbing for tissues by the end of the session. I was humbled as I walked out of the conference center on that wintery November day, and all I can remember thinking I wish I had those same insights in my early twenties. To borrow from Margaret Mead, “Never doubt that a small group of thoughtful committed citizens can change the world; indeed it’s the only thing that ever has.” For more information about the Autism Consortium, please visit the website: www.autismconsortium.org For more information about the author, Katherine Blakeslee, follow her rumblings on Twitter @kbswoon
Mallory and boyfriend Owen enjoying the New England coast after their move to Boston
When I got accepted to the Boston University School of Public Health in the spring of 2012, I was excited and thrilled, but underneath those emotions was a layer of dread and anxiety. My acceptance meant that inevitably I would have to move from my home in rural Maine, to the big city. This of course was my intent when I applied to the graduate program at BUSPH, but the fact that the transition would now be a reality was nothing short of daunting.
I began telling people about the upcoming move for both my boyfriend and I, who use mobility devices to get around independently and would require fully accessible housing, and received varying reactions. Many people shared the same initial thought of, “What are you, crazy?” and we were told horror stories of the lack of accessibility within the city. I had spent months researching academic programs, and where I wanted to live, and although I had researched cities based on accessibility, but I refused to let my disability and physical challenges dictate the direction that my life would take.
We began the housing search feeling optimistic. Being from small, rural areas, we had what we thought was a reasonable budget and we had lots of connections in the disability community, both in the state of Massachusetts and nationally. What we found however, was that those things only got us so far. The university was supportive, but they had limited options for graduate students, and none that would be sufficient for two people who required accessibility.
In our early phases of searching, we started by looking specifically for just accessible apartments. We spent hours scouring Craig’s List only to find hundreds of old, cramped low budget apartments with flights of stairs for an entrance. There were many within our budget, and we discussed options of how we could “make it work,” through various accommodations or just being creative.
I called and emailed every listing that looked like something that could work for us. Nobody called me back, or responded to my inquiries. With our modest budget and request for a fully accessible unit, we were not a realtor’s dream. One broker had a conversation with me about a unit she was sure would be “perfect” but the conversation ended abruptly with a last interaction of her sending me a text message of just a smiley face emoticon.
Another woman called me back and we were able to arrange for a friend to do a video tour of the potential units she had in mind for us. Even from the short videos we could tell the apartments were not accessible, and the agent had no experience with any sort of disability. We knew it was a red flag when her first question to me in our conversation discussing wheelchair accessibility was, “Is one or two steps OK?”
Finally, I took my blinders off of just wanting so desperately to move to the city and came to a conclusion that this was unacceptable. We should not be forced to accept something that wouldn’t truly work for us when other people without disabilities had thousands of apartments to choose from. We were looking to make a move that would change our lives. We were both new at life in the city; we were going to be away from our immediate families, and taking on a lot of things for the first time. Wherever we decided to live, was where we were going to be for the good, the bad, and the very ugly. At the end of the day we did not want to get into our apartment and have to exert the last bit of our physical and emotional energy to do something simple like use the bathroom. This was going to be our HOME. I understood that going to grad school would mean that I would have to make sacrifices, but I was not willing to sacrifice my inclusion in society for the sake of finding housing.
It was at that point that I decided to reach out to our friends in the disability community. I contacted the regional Center for Independent Living and explained our situation, of how we were hoping to live independently in the city of Boston, and our tight timeline of needing to move in time for me to start classes at the end of the summer. The woman I spoke with was kind, but her response seemed automated as she began explaining the process for applying for subsidized housing. I kindly explained to her that I was not looking for that kind of support, simply buildings that were accessible. She seemed surprised at this request and was silent for a moment. It seemed odd to me, that in asking for LESS support, it could actually be more difficult of a request.
She referred us to a registry that listed all the accessible properties in Massachusetts and that could be searched based on various criteria such as location, budget, or specific accessibility features. However, in using this search engine, we only found buildings that were specifically for senior citizens, individuals that were of low- income, or were located a significant distance from the city, or a combination of all of those things. The more we narrowed our search, the fewer listings that resulted, and we started to realize that what we were looking for simply did not exist.
Just when I was actually considering deferring my educational offer, in a last attempt, I reached out to a particular property that looked promising. It was far beyond our original budget and considered a “luxury housing development,” but it was fully accessible, safe, in the ideal area, and had amenities that would actually make our lives easier instead of harder. Within days, the apartment was ours. It was a 500 square foot studio, so we knew space would be a challenge, but we saw no other options.
We have been living in Boston now for almost two years, and I have become even more passionate about the existing housing challenge. While many people living with disabilities are aware of the struggles to find accessible, equal opportunity housing in the city, I have learned that it is not necessarily common knowledge to those without disabilities. All students struggle to find housing in the city as more and more people move to Boston each year, but when I told my peers that we were given the option to live in a nursing home so I could attend school, they assumed I was joking.
People assume that all buildings have ramps and elevators, and bathrooms that can fit a wheelchair. Until they start looking at things through a different lens, they just believe the city works for everybody. The truth is that the housing options for people with disabilities are limited and segregated.
While the models that are available may work for many people, they should not be the only options. Housing is ultimately the foundation for all people to live healthy fulfilling lives and for people with disabilities, this component can be even more crucial. If people are forced to live in unsafe conditions or away from their peers just because they require accessibility, they will be even less likely to be able to achieve success in employment, education or other endeavors that would help them to become equal members of society.
With the thriving disability community in Boston, and the current political efforts to increase housing in the city, I do believe there is progress being made, but until we have everybody on board, and understand the level of this problem, there is still a long way to go!
Behavior as a mean of communication for nonverbal individuals with ASD
As a parent of a nonverbal child with autism it has been critical that members of my son’s medical team understand and appreciate the connection between his physical pain and his uncharacteristic behavior. Early on in my journey to secure appropriate medical care for my son, I was given a critical piece of advice from our pediatrician. He once told me “whenever there is a dramatic change in my son’s behavior that could not be readily explained by some known cause, to pick up the phone and bring him in to be seen.” I did not realize at the time how rare and how invaluable this piece of medical advice would be for our family. In fact, I can recall an occasion when my son started to randomly bite his hand. In an effort to stop the biting, the educators working with my son immediately began formulating a behavior plan to address this self-injurious behavior. But I thought, what if there’s more to it. I remember calling my pediatrician about the biting and bringing my son in to see him. As it turned out, my son had a raging sinus infection. Once the infection was treated, the biting behavior vanished.
To an inexperienced physician, especially in an emergency department (ED), assumptions on how to treat an initial presentation are often made based on an assessment map for a typical child. During a recent trip to the ED with my son, the physician on duty made a determination that my son’s pain level was low based on his behavior. He was not crying in pain and was not showing any other signs. My son was simply curled up on a stretcher, lethargic and weak. The imaging studies suggested that he had a small bowel obstruction and a CT scan was needed to confirm this diagnosis. The ED physician stated that “with children with challenges like your son, we do not think a CT scan would be feasible.” All I could think of was, if a CT scan was the standard of care for children presenting with abdominal pain and persistent vomiting, then my son would have a CT. A CT scan was eventually done and did confirm his diagnosis.
I see it as critical that ED medical staff get a complete picture of a child’s profile before jumping to assumptions about the level of pain or the degree to which a child with autism may cooperate on an exam. We as parents are key members of the treatment team that must educate providers that each child on the autism spectrum is unique. We have to work together to make sure that assumptions aren’t made based on previous experiences with other individuals on the spectrum. My son is so fortunate that his medical team is composed of exceptional professionals who understand that a child with autism is a child first and that behavior often serves as a way to communicate. Other medical professionals need to learn how to translate uncharacteristic behaviors. Understanding that each child with autism is unique, and that medical comorbidities exist. Each and every child needs to be comprehensively evaluated in an effort to provide the highest quality of medical care for individuals on the autism spectrum. For more information regarding medical comorbidities and autism see: https://nationalautismassociation.org/pdf/MedicalComorbiditiesinASD2013.pdf
We were in the junk food aisle. I was not happy about this. The fruit aisle had been a total bust, as had been the cereal aisle.
With her hand hovering over a package of Twinkies, my sister Amelia turned to me and gave me a very grumpy look.
A woman pushing her shopping cart by us in the cramped Stop & Shop aisle scurried away, sensing an argument in the air.
As an adamant advocate for self-determination for people with intellectual disabilities, I was struggling with my sister’s food of choice for breakfast, debating where to draw my line in the sand – or whether I should do so at all. I chose the fruit route – and made a plea for cantaloupe.
“But I do not want cantaloupe, I want Twinkies!” she declared, pointer finger straight up, “they taste good with milk and tea.”
“But, Twinkies,” I stammered, “that’s – that’s just not breakfast food!” My counter argument came out as my hand went on my hip.
“It’s my human right and you can’t stop me,” she said loudly, her back stiffening. I recalled that Amelia was a regular attendee at her group home’s human rights meeting, in which people role played standing up for their human rights in decision-making at all levels – from self-defense to food choice.
“On the one hand,” I thought, “this human rights training is totally right on, but on the other hand, how could they let a person with pre-diabetes eat Twinkies, of all things, for breakfast?”
Agitated, my voice now met hers in decibel. “It’s my house, and my wallet, and we don’t eat Twinkies for breakfast at my house!” I stammered, attempting to impersonate a parent, now that our parents were dead.
The parental tone did nothing to further our détente. Her voice even louder now, Amelia became more adamant “They let me eat it at MY house. I went to MY human rights advocate. I eat one for breakfast with tea and milk. It is what I eat for breakfast. I WANT it for breakfast.”
Freeze frame.
This seemingly simple incident in the grocery store is actually about the foundation of modern disability policy writ small and large – the implementation of the “dignity of risk.” Coined during the de-institutionalization era by disability studies scholar Robert Perske at first used this phrase to challenge disability system workers about:
“…going overboard in their effort to protect, comfort, keep safe, take care and watch…this overprotection can…consequently prevent the retarded individual from experiencing risk that is essential for normal growth and development.” (Perske, 1972: 24)
By reflecting on the potential gain from experiencing day-to-day risk, Perske championed the need for people with intellectual disabilities to be able to take such chances as well. While I am doubtful that Perske thought much about Twinkies for breakfast, he did comment on the need for ‘prudent’ risk taking, stating:
“Knowing which chances are prudent and which are not—this is a new skill that needs to be acquired…Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk-taking and there can be crippling indignity in safety!” (Perske, 1972:24).
Perske’s commentary has informed the disability service community to think deeply about how to best support people with intellectual disabilities living and working in the community. And yet, I wonder, have we really had the conversations we need to have as service providers and advocates about the nitty gritty of the implementation of the dignity of risk – say – when it comes to Twinkies?
“Well,” I thought, “here I am, on the front line of implementing this important principle via arguing with my sister about the merits of a healthy breakfast versus the demerits of Twinkies. “Somehow,” the cynical me thought, “we’ve taken a wrong turn on this human rights stuff.” The disability rights movement supporter in me nearly passed out at this thought.
Taking a deep breath – and a new tack – I posed this question to Amelia. “OK, I understand and agree that it is your right to choose Twinkies, but will you at least ALSO have some fruit, and think about how Twinkies impact those sugar levels the doctor warned you about last week, you know, because of how you’ve been feeling sick sometimes?” As her sister and pseudo parent-figure, I felt compelled to lecture, and yet I also felt like a hypocrite, failing in my chance to effectively implement of the dignity of risk.
I was met with silence as Amelia defiantly placed three packages of Twinkies in the shopping cart. So, as many parents have likely done, I bought the Twinkies in order to avoid a scene in the grocery store. And, needless to say, Amelia had her Twinkies for breakfast the next morning, with tea and milk – and did give a bowl of cantaloupe a try.
While Amelia has since moved on from Twinkies to Count Chocula’s best, we do continue our discussion of her “sugar problem” and the importance of healthy choices, but the process is slow. I am often stumped about how to support an adult with an intellectual disability on making choices, as I believe a balance must be struck between supporting self-determination that incorporates the ‘dignity of risk’ with the need to support a person’s health “security.” Or, maybe that’s just an overprotective sister talking.
So, when I find myself struggling with Amelia over such issues as Twinkies – and more recently dating, sexuality and contraception – I look back to Perske to guide me. Recently, in looking over his seminal writing on the topic, Perske also addressed the disability service community, asking them to look within:
“Overprotection can keep people from becoming all they could become. Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try.” (Perske, 1972:24)
And in reading this passage, I was able to step outside of myself. I look back at myself and see that it has taken me too long to realize that much of the learning that needs to be done is learning on MY end. While my health-focused conversations with Amelia go on, I have learned to back off and respect my sister in ways I never thought I could. And in turn, Amelia has, on occasion, surprised me in asking for melon for breakfast.
Perske, R. 1972. “The dignity of risk and the mentally retarded.” Mental Retardation 10:24-27.
Note: The name “Amelia” is a pseudonym and is used to protect the privacy of the author’s sister
Dr. Elspeth Slayter is a Fellow in the Advanced Leadership in Neurodevelopmental Disabilities Program at the Eunice Kennedy Shriver Center of the University of Massachusetts Medical School. Dr. Slayter is also an Associate Professor of Social Work at Salem State University in Salem, Massachusetts.
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 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.
My name is Jonathan O’Dell, and I’m the Assistive Technology and Training Specialist at the Massachusetts Commission for the Deaf and Hard of Hearing.
When Hearing Aids Were No Longer Enough
I became ill with meningitis at age 10 and I lost my hearing quickly. I remember wondering why I couldn’t understand the radio or television anymore, but it wasn’t until a few months later that my father thought to have my hearing tested and we found out I would be needing hearing aids.
I used a body aid at first, a big box with a wire snaking to my earpiece; then I wore smaller behind-the-ear types for many years. Unfortunately my hearing kept getting worse, and soon even the most powerful aids didn’t help me anymore. That’s when I decided to see if a Cochlear Implant (CI) would help me.
What Is A Cochlear Implant?
CI‘s are designed to help people with severe nerve damage – “sensorineural hearing loss” is the medical term – by taking over the functions of the damaged cochlea. That’s the part of the ear where speech and sounds are received as vibrations and sent to the brain as electrical signals.
When the cochlea is damaged the brain doesn’t get the full signal anymore, which means that while you may hear something you might not understand what it is, or what someone is saying to you, even though you can hear them speaking.
A CI requires surgery and is done under full anesthesia, so I asked a lot of questions about safety and effectiveness from my surgeon and his team. They told me it was a safe procedure, problems were fairly rare, and that while they couldn’t guarantee my hearing would be better, they were pretty sure it would help me quite a bit. So I decided to go for it, and my left ear was implanted in the winter of 2011.
Internal Component of Chochlear Implant
After The Surgery
It took me less than two weeks to recover from the surgery, and just a few weeks more to get used to the initially very strange way that everything sounded. After I had gotten used to it, I was tested to see how much it helped. I had improved from 0% speech discrimination (understanding words without speechreading) to almost 60%.
I did so well that I decided to get my right ear implanted also, which was done in February of 2012. The surgery was more complex this time, and the recovery period longer, but the results were equally impressive.
Is A CI Right For You?
If you notice that even a really strong hearing aid isn’t helping you anymore, maybe it’s time to look into getting a CI for yourself. You’ll have to undergo several tests and doctor’s visits to see if you are a candidate. The process takes a long time, but it was absolutely worth it for me and many other late deafened adults I’ve talked to who also went for it.
External Component of Chochlear Implant
I’m much more confident now in approaching anyone, anywhere to have a conversation. My hearing aids just amplified sounds and didn’t make them any easier to understand, but making sounds easier to understand is what CI‘s are designed to do. The implants are only getting better; they keep getting smaller, and at least one manufacturer has come up with a waterproof CI for people who want to hear while on or in the water.
Years ago, I had the privilege of meeting Alex Brejcha while we worked together to find an accessible home for he and his wife, Tatiana. Alex was prepared to purchase a home and we had funding for modifications, yet the challenges in finding a home that could be modified for accessibility were overwhelming to say the least.
Yet Alex never gave up. In the process, his persistence, positive outlook and sheer determination were a lesson for us all.
This week I am pleased to introduce Alex as our guest blogger to share his personal thoughts about living with M.S.
Diagnosis and Early Symptoms
M.S. is a neurological disorder impacting the ability of nerves to transmit signals from brain to body. The biggest problem is that there are a variety of different ways that this impacts people.
In my case, the initial diagnosis was made in 1980 when tingling in the hands and coordination impairments immediately had a major impact on my life. I was an art student at Temple University in Philadelphia with a gallery interested in my work, but I did not have enough pieces yet for a show.
A combination of symptoms complicated things. I had visual problems which fortunately cleared up, but increasing coordination problems ended my art career hopes, and walking problems diagnosed in 1980 progressed to paraplegia between 1980 and 1985.
The good and bad of research
In retrospect I realize that part of this was my own fault, because another aspect of M.S. is that Affect has a very real Effect. In other words: attitude is a bitch, if you forgive the language.
To clarify: I was very fortunate to work graveyard shift at a major teaching hospital in Philadelphia for 27 years. We had an excellent medical library, and the first thing I did upon my diagnosis was go to the library to research what M.S. was.
This was a big mistake! What I failed to realize was that medical journals concentrate on the worst aspects of a disorder. As I was reading, I made the mistake of believing that what “might” happen “would” happen — and my body happily went along with it!
This is a crucial aspect of Multiple Sclerosis which people need to understand if they are diagnosed. This is a condition with a variety of forms ranging from mild to more progressive types such as I have.
Life is what you make it
It is critical to work closely with a neurologist specializing in this condition in order to take advantage of improving treatment paradigms that are being developed. Just because you are diagnosed with this disorder, it does not mean an end to your life.
As I wrote, I worked for 23 years in a wheelchair and drove independently — first in cars with hand controls, and later in a variety of converted vans. One advantage of the diagnosis was that I had a handicapped parking spot right outside the entry to the hospital and I didn’t have to pay for parking in the hospital garage.
To borrow a cliché: life is what you make it!
I never would have had the relationships I have been lucky to have (including a wonderful five year marriage to a woman I still live with), if I had not been diagnosed with M.S. The truth is, before M.S. I was a terminally, overly shy nerd, afraid to approach a woman.
But when everyone is staring at you anyway: what the hell?
syndrome, I must choose between two bad options.
