Shout Out: Resiliency and Self Care
Recently I was talking with a colleague who is a supervisor, mother, wife, and incredibly giving person. She had been sick for two weeks and hadn’t been to a doctor. I reminded her, “Put on your oxygen mask first,” which is the instruction given by flight attendants to parents. I then laughed that I had just cancelled my own check-up in order to take the cat to the veterinarian for a routine appointment! Bad example, right?
Parents, grandparents, and even siblings put others’ needs first. Resiliency and self-care involve identifying and using supports to deal with challenges. Are you minimizing basic self-care, such as sleep, healthy eating, exercise, and relationships? For siblings, are they leaving things unsaid, when they want to talk with you?
The reality is that you are absolutely doing all you can do, and self-care may seem to be a luxury or completely unrealistic. Here are some ideas:
Usher Syndrome Awareness Day is celebrated worldwide on the third Saturday of September each year to raise public awareness about the disorder and to increase funding to find a cure. Usher Syndrome is an autosomal recessive genetic disorder. It is the most common genetic cause of combined deafness and blindness and it affects over 400,000 people worldwide, with about 50,000 of those living in the United States. Usher Syndrome affects a person’s vision, hearing and balance. Vision loss is caused by a progressive vision disorder called retinitis pigmentosa(RP). RP causes the light-sensing cells in the retina to gradually deteriorate, initially resulting in night blindness, followed by a narrowing of the visual field, commonly known as tunnel vision. People with Usher Syndrome are born with or develop hearing loss. Since balance is achieved and maintained through input from the eyes, vestibular organs in the inner ear and the sensory systems of the body, people with Usher Syndrome suffer from balance issues due to vestibular function.
There are 3 clinical types which are determined by the severity and age at which symptoms present and there are at least 11 genetic types which are determined by the gene affected. Type 1 is characterized by severe-profound hearing loss at birth, the onset of RP by age 10 which progresses quickly into almost complete blindness or tunnel vision by early adulthood and severe balance issues resulting in delays in sitting and walking for infants. Type 2 is characterized by moderate-severe hearing loss at birth but normal balance. Onset of RP usually does not begin until late adolescence. Type 3 is characterized by normal hearing and vision and normal or near normal balance at birth. Both hearing and vision slowly begin to deteriorate during adolescence and continue over time. Balance may or may not be affected in the future.
Usher Syndrome is diagnosed with genetic testing and there is currently no cure. Treatment involves managing hearing, vision, and balance problems. Early diagnosis helps tailor educational programs that consider the severity of hearing and vision loss and a child’s age and ability. Treatment and communication services may include hearing aids, assistive listening devices, cochlear implants, auditory (hearing) training, and/or learning American Sign Language. Independent-living training may include orientation and mobility training for balance problems, Braille instruction, and low-vision services.
There are various non-profit organizations, such as the Usher Syndrome Coalition, Ava’s Voice, Hear See Hope, Usher Syndrome Society and Usher 1f Collaborative, to help raise awareness and funding for Usher Syndrome. The Usher Syndrome Coalition also hosts an annual conference on Usher Syndrome and Ava’s Voice hosts a week long camp for children ages 11-14 with Usher Syndrome and a family weekend for those with children ages birth to 10 with Usher Syndrome. In Pennsylvania, we have the State Deaf-Blind Project and the Pennsylvania Partnership for the Deafblind to assists those living with Usher Syndrome and there is also the National Family Association for the Deaf Blind. Someone diagnosed with Usher Syndrome should also register with the USH Trust to stay informed of the latest research, treatment and clinical trials.
On September 3rd, Governor Wolf signed the State Proclamation declaring September 21, 2019 as Usher Syndrome Awareness Day in Pennsylvania. Wayne County will declare the same for their County at their weekly Commissioner’s meeting on September 19th. We encourage you to contact your local municipal government to do the same.
It's just a little over a month since we lost Brittany. Many of you knew her. We thank you so much for your condolences and kind thoughts, prayers and words. The support of the deafblind community has helped us greatly.
What I'd like to focus on today isn't our sorrow, but how our deafblind children affect and influence their siblings.
We all know that our kids touch other people outside our immediate families -- relatives, friends, teachers, nurses, doctors, social workers, aides and more. And all of these groups were present at Brit's memorial service, including the many friends she made during the last five years among the deaf community at ParHtners Deaf Services.
We, as grandparents, have many, many great memories of Brit, and they will remain with us forever. But one of the things that sometimes isn't so obvious on a daily basis is the impact that our deafblind children have on their brothers and sisters. In this spirit, I'd like to quote Brittany's sister, Kayla. She wrote her tribute for Brit's ceremony, but was too emotional to speak it at that point. This is what she wrote:
My sister Brittany passed away in her sleep the morning of July 20th. She was only 26. She fought her whole life to live, but she did it with a smile on her face. She was so beautiful, strong, sweet, feisty and funny. She was a light in everyone's life, but she was MY big sister.
I'm going to miss her laugh, the way she would run her fingers across my face and hands, her sudden bursts of laughter and even the constant sound of her Elmo guitar that she always had up to her ear repeating over and over the same part of the song. I can still hear it so clearly.
She couldn't see, but she loved the sunlight. She'd just stand by the door looking up at it. I can picture her blue eyes and long eyelashes in the sun perfectly like a photograph in my mind.
She couldn't hear, but was she was the best listener. When I was younger I'd just talk to her about anything while she was standing playing with her toys to contently.
I'm sad she had to go so soon, but I'm glad she doesn't have to be in any more pain. She's a part of me and everything I do.
I'm not sure what is after this life, but I hope I get to see her again. She was so perfect and amazing and she definitely left her mark on this world and anyone that was lucky enough to meet her. She's a true inspiration. I feel so lucky that I got to be a part of her journey.
--Kayla Villano, Brittany's sister
Thanks to everyone for your words of comfort and support,
Gordon & Mary Boe
PPDB June 2019 SHOUT OUT
I remember when I was first groomed to use the word “advocate” as opposed to the word “fight.” It was when my son, Hunter, was very young. I had just started to engage with the educational system and was working to ensure that his educational team had the specific knowledge required to work with a student with both a vision and a hearing impairment. That is when I began to learn that getting what you want is not always about the fight. It is about educating yourself, improving your argument, and getting advice from and joining forces with others.
Advocacy is defined as any action that speaks in favor of, recommends, argues, supports, defends, or pleads on behalf of one’s self or others. There are many types of advocacy.
Self-Advocacy. I knew early on that this was a must. I had an obligation to teach my son how to represent himself and stand up for his own needs.
Peer/Family/Friends Advocacy. When I first started advocating on behalf of Hunter, I looked for peers that had walked this path before me. Initially these were other parents of children with deaf-blindness, but now I also receive support and advice about how to advocate from adults who are deaf-blind. In addition, having the support of family and friends has been crucial for my own well-being. I think this is why I hold so dear to my heart the quote from Helen Keller, “Alone we can do so little; together we can do so much.”
Group Advocacy. Group advocacy happens when our community comes together to work on shared interests and goals and support each other.
Professional or Crisis Advocacy. As families, we may have times when we need to use either legal representation and or another type of paid or non-paid representation on behalf of our cause.
Political Advocacy. Our family can be a voice for action at a political level on behalf of the deaf-blind community.
In addition to advocating for my son, I have made it a point to teach him self-advocacy—to know himself and know what he needs and how to get it. Regardless of whether we have a disability, don’t we all do this as we go through the everyday tasks of life? We must advocate for what we need. If we do not ask, it is easy for others to assume that we do not need.
PPDB Board Member
Image: The Lorax on a tree stump with the quote " Unless Someone like you cares a whole awful lot, nothing is going to get better. It's not"
PPDB May 2019 Shout Out (please excuse the fact that’s it’s now June)
As parents of extraordinary children, our minds are always ‘on’. Waiting for the next blow. Even when I have a few months of wonderful, in the back of my head I’m always waiting for the other shoe to drop. Many of you know about the past 3+ years and Shane’s almost monthly trips to the ER. Well, we just went 6 months without an ER trip AND admission! Then, bam. Shane gets sick and we are back. Everything I thought I moved past and dealt with comes flooding back. It hit me hard. I always know he will go back to the ER at some point, but darn, those 6 months were really nice.
There are studies that compare the stress of special needs parents to that of combat veterans. I believe that to be true.
I want to share this with you so you know you’re never alone! Please talk to someone and please know PPDB and I am here for you. Please reach out.
We live unique lives and I’m beyond blessed to be Shane’s mother. Just know it’s ok to say you’re stressed and to say you need a night off. Taking care of yourself makes you a better parent.
-Kristina Kezmarsky, PPDB President
Click here to While visiting an amusement park a few summers ago, we realized that people were continuously tripping over the cane he uses to navigate the park once it got dark. We needed something to allow his cane to stand out to others at night as well as it did during the day. We tried wrapping the cane with glow necklaces and even tried glow tape, neither was a great solution. We came across some finger lights in the dollar store. The little elastic band that is made to fit over your finger fits beautifully around the stem of the cane and illuminates his cane so that others can now see it. They come in multiple of colors including white and cost so very little for such a great solution.
Tammy Kitterman, Vice President PPDB
The Pennsylvania Partnership for the Deafblind (PPDB) would like to thank Jackie Brennan for her many years of service. She has been instrumental in establishing PPDB, including the status of a nonprofit organization. Jackie, Superintendent of Overbrook School for the Blind, finds time to contribute to advisory councils, professional organizations, and other entities that support students with many different needs. She brings her expertise and commitment for students who are deafblind to many efforts. Here are two important resources that you many want to explore:
Jackie helped bring the National Agenda for Students who are Blind or Visually Impaired to Pennsylvania. This agenda sets forth best practices in education, along with a description of the Expanded Core Curriculum:
Jackie made sure students who are deafblind were included in Pennsylvania’s Communication Plan for Students who are Deaf/Hard of Hearing. This document helps teams determine necessary supports for reading, communication, and the utilization of assistive technologies:
On a personal note, I met Jackie over 27 years ago. She took me under her wing immediately, and has never stopped advocating for children and youth with disabilities. Jackie brings goodness, excellence and commitment to all that she does.
Wishing HAPPY HOLIDAYS to our PPDB Membership!
A recent inquiry came through the deafblind network among Family Engagement Consultants from a parent requesting resources related to talking to a son/daughter about their changing bodies.
While sex education may be a difficult subject to discuss with any of our children, when a disability is also involved communicating and understanding of this information may be compounded. With a little extra downtime on our hands over the Holiday Season, this might be something to consider as a topic of discussion among family members.
Here are a few of the suggestions that were shared:
Introduction to Sexuality Education for Individuals Who Are Deaf-Blind and Significantly Developmentally Delayed - Standard PrintPDF Robbie Blaha and Kate (Moss) Hurst – Downloadable link
This book is for parents and professionals. This text offers information and instructional guidance for delivering sex education to deaf-blind students who also have cognitive disabilities. Issues of self-expression related to gender identity, modesty, and appropriate touch are discussed. Specific instruction is included for menstruation, masturbation, hygiene, health, and sexual abuse.
Two other great resources by Terri Couwenhoven are: (both of these books are available through Amazon)
The Boys' Guide to Growing Up gives boys with intellectual disabilities the facts they need to navigate puberty.
Written at a third-grade reading level for boys aged 9-16 with Down syndrome, autism, cerebral palsy, intellectual disability, fragile X, or other special needs, this book is the companion to The Girls' Guide to Growing Up (2011), also by Terri Cowenhoven. The author, a certified sexuality educator, draws on more than 20 years experience conducting workshops on puberty and sexuality issues with boys, girls, families, and professionals. "This appealing and easy-to-follow guide for girls with intellectual disabilities is an introduction to the physical and emotional changes they'll encounter during puberty."--Amazon.com. The Girls' Guide to Growing Up
The book's succinct text, realistic illustrations, and learning activities enable boys to read the book themselves or follow along with the aid of an adult. It’s reassuring, matter-of-fact tone shows boys what changes--inside and out--to expect during puberty, and how to manage them:
-Growth spurts and bigger muscles
-Voice cracking and deepening
-Blemishes and oily skin
-Body and facial hair
-Crushes, flirting, and sexual feelings
-Erections, wet dreams, and masturbation
The Boys' Guide to Growing Up gives practical advice on commonplace concerns such as shaving, what to do about zits, and how to smell nice. More complex and essential topics are covered too, such as how to know when flirting is reciprocated (or not!), how to hide or discourage an erection in public, what information is okay to share with others versus what should remain private, and how to stay safe. It's a must-have book for boys on the brink of puberty, teens who are in the midst of it, and the adults who care for them.
Pennsylvania Partnership for the Deafblind (PPDB) November Shout Out!
As the Holiday Season is quickly approaching, we will have opportunities to be with family and friends and taking advantage of the many celebrations and festivities that occur during this fun time of year. We love to share these activities and exciting moments via social media such as Facebook, Instagram and our Twitter accounts. The question to all of us, are these posts, pictures, and tweets accessible for all to enjoy? As a community that supports and embraces deafblindness, we should do our best to model accessibility. Here is a link to a great blog on a few easy 6 steps to begin thinking.
Wishing Everyone a Wonderful Thanksgiving Holiday!
PPDB Board Member
Each month members of our board share their thoughts on vary topics.
Pennsylvania Partnership for the DeafBlind