July 2020 PPDB Shout Out:  Back to School

The return to school is on all of our minds.  Every day brings new questions and hopefully some answers.  You already have a good sense of what our children need, but it is hard to put that into the mix of what is unknown.   We know children need predictability, routine, clear communication, and positive support.  Here are some ideas, and I hope you will share your thoughts, too.
Predictability:   Involve your child in preparations for back to school, e.g., selecting a new bookbag, getting ready for the back to school picture, or setting up your virtual learning center. 

Routine:
Practice routines such as hand-washing, or the use of a face covering (if appropriate to your child’s age and medical status).   Reach out to your child’s teacher before the year begins, to ask about the daily schedule and how to preview that schedule, using your child’s learning preferences. 

Clear Communication:
Schools are still making and revising plans on reopening.  We can continue to talk about going back to school, and share what we know (e.g., location, teacher name, classmates).  You may want to list your concerns, such as a decrease in any skills, or a need to provide instruction about skills that you see as important.  Also, make a list of new skills and strategies that worked well for you and your family during the pandemic closure.  You can include siblings in this discussion, as they have a wealth of knowledge and would benefit from knowing their input is valued.   You can share this information with the IEP team. 

Positive Support:
Children pick up on our emotions, whether through touch, facial expression, or language.  Reach out to families through PPDB, your PaTTAN Family Consultants, educators, or other sources of support, so that you feel informed.  Set a foundation for your children by identifying positive aspects of returning to school. 

Please share your ideas!
​
Juli Baumgarner
School Psychologist
Special Advisor to the Pennsylvania Partnership for the Deafblind 

Let's talk about COVID-19 burn out.  At seven weeks into this pandemic, with no clear end in sight, we have all undoubtedly begun to feel the anxiety, stress, and frustration that has engulfed almost every aspect of our lives.  Families are struggling to pay bills, put food on the table, and stay safe and healthy.  Working parents are struggling to juggle work and their children’s school work all while continuing to tend to their day to day family operations.  Children are struggling to understand the ramifications of the virus, social distancing, online learning, missing crucial social and emotional development that can only come from their friends and peers, and they may also be silently and helplessly watching their parents struggle.  Seniors are feeling more and more isolated, unable to get the care or help they so desperately need, missing important events in the lives of their children, and missing their grandchildren and great grandchildren as they grow and change.  The disabled population, most especially the Deafblind, are feeling more and more secluded and helpless every day.  They are given minimal support at best and are sometimes treated like burdens or pariahs.
 
There is a really great saying that has been going around lately and it basically says that we aren’t all in the same boat but we are all weathering the same storm.  This whole pandemic looks very differently for each of us but we can learn from each other and help each other through it.  I know that personally, I have been struggling a lot lately.  But through all of this, I have learned so much.  I learned how important self-care should be and that sometimes we need to step away from things and take some time for ourselves.  We can’t possibly be expected to do all of the stuff that is required of us if we have a breakdown.  Remember deep, calming breaths and there are trained people all over who can help.  Or maybe a simple phone call to a friend or loved one.  Take that afternoon nap if you can.  Go for a long walk with your family.  And read that book, even if it takes you all month.  I have also learned what it means to really have a conversation with someone and how important phone calls and snail mail actually can be, especially for the elderly.  If you have small children, let them draw or color pictures to send to family.  Have older children write letters or emails.  Make that call to a loved one that you have been putting off because you haven’t had the time.  Who knows, you may make their day.  Pay attention to the news but don’t let it overwhelm or consume you.  Enjoy the little things that you may have been overlooking because you were too busy.  Remember that every day is a blessing and make sure to hold your little ones tightly because they don’t stay little forever.       
 
If anyone is suffering from COVID-19 burn out and is in need of support or help, for any reason, feel free to reach out to me at any time. Stay safe and take care.
 
~Lisa     

​"Alone we can do so little.  Together we can do so much." 
 
This Helen Keller quote is one of my favorites of all time.  It is especially appropriate in these trying times, when we are all forced by Covid-19 to be physically separated and left to our own devices in coping with the new world.  Other than family living with us, the clerk at the grocery store, the pharmacist, and health care workers, we pretty much don't see anyone in person anymore.  And even then, it's behind a mask.
 
These times can be especially trying for parents and families in the deafblind community.  Our families live with tremendous stress even in the best of times.  In reviewing previous Shout-Outs over the last several years, I found at least four that deal with the difficulties our families face in normal times:
 
December 2019 - Resiliency and self-care

May 2019 - The dread of waiting for the other shoe to drop, but remembering that you are not alone!  Reach out!

August 2019 - Remembering Brittany - surviving with the support of the PPDB community, friends and family

​May 2018 - "Whose gonna care for those who care for the ones who went to war?" 
 
(You can find these and other informative shout-outs on the PPDB website:  www.papdb.org  Click on "More..." to find them.)
 
And now, we're dealing with the isolation imposed by Covid-19, which has immeasurably added to our stress levels. 
 
So, THE REAL REASON I am writing is to remind you that there is a Zoom Meeting, scheduled for April 30 at 8:00 pm, for the specific purpose of supporting our parents and caregivers in this time of tribulation.  Please refer to Lisa Lopatofsky's April 14 notice on this listserve.  The notice and its attachment provide the details.  It's an opportunity for an informal chat to share some celebrations and challenges you are facing, and to get help from other parents and caregivers.  We hope you can join this meeting.  RSVP to Lisa at lopatofsky.lisam@gmail.com by April 27.
 
Don't be alone.  Be together with us.  We can get 'er done.
 
Thanks and hope to see you on Zoom soon.
 
Gordon Boe 

Each March, the National Association of Councils on Developmental Disabilities (NACDD) partners with Association for University Centers on Disabilities (AUCD) and National Disability Rights Network (NDRN) to create a social media campaign that highlights the many ways in which people with and without disabilities come together to form strong, diverse communities.
 
The campaign seeks to raise awareness about the inclusion of people with developmental disabilities in all areas of community life, as well as awareness to the barriers that people with disabilities still sometimes face in connecting to the communities in which they live.
 
Governor Tom Wolf has signed a proclamation highlighting Pennsylvania’s accomplishments towards the goal of full inclusion for individuals with developmental disabilities.
On March 3rd, PPDB exhibited alongside the Pennsylvania Deaf-Blind Project to provide awareness of our organizations and deafblindness at the Disability and Mental Health Summit, sponsored by Rep. Dan Miller.  This year’s event also celebrated the 30th anniversary of the passage of the landmark Americans with Disabilities Act.  There were more than 40 informative sessions and hundreds of exhibitors for the more than 1,100 people registered to attend.
Join the Conversation on Social Media by sharing your stories using #DDawareness2020.

Saturday, February 29th , 2020 will be the 13th International Rare Disease Day.  On and around this day, hundreds of organizations from countries and regions all over the world will hold awareness-raising activities.  Rare Disease Day always takes place on the last day of February each year.  The first Rare Disease Day was celebrated in 2008 on February 29th, a “rare” date that happens only once every four years.  Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a “rare” number of days.  The campaign started as a European event and has progressively become a world phenomenon. The USA joined in 2009 and to date over 100 countries participate all over the world.
 
The reason of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and the impact on individuals and or course their family lives.  In addition, the campaign targets policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.  It is so important to build awareness of rare diseases because 1 in 20 people will live with a rare disease at some point in their life.  There is no cure for the majority of rare diseases and many will go undiagnosed.  Rare Disease Day improves knowledge to the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living and supporting individuals and families living with rare diseases. 
 
Deaf-Blindness in all of its uniqueness would certainly fall under Rare Disease.  Have you ever checked out this list from the National Organization for Rare Disorders (NORD)?
https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/  Don’t see a description that would describe your individual deaf-blindness?- then it is very rare. 
 
You can Rise Up For Rare Disease Day by getting involved and having some fun!  Here are some ideas and ways to get you started  https://rarediseases.org/rare-disease-day/
​

​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:

• Give yourself grace to understand you are doing your best. 
• Ask for help when you can.
• Make small changes to take care of yourself.

Best Regards in the New Year,
Juli 

​
 
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.             
 

Hi folks,
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:
REMEMBERING BRITTANY
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
Why Advocate?
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.
Patti McGowan
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"