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

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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:
https://www.teachingvisuallyimpaired.com/national-agenda.html
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:
https://www.pattan.net/disabilities/deaf-and-hard-of-hearing/communication-plan/
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
-Moodiness
-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.
https://lifeofablindgirl.com/2018/10/31/6-ways-to-make-your-social-media-posts-accessible-for-people-with-a-visual-impairment/  

Wishing Everyone a Wonderful Thanksgiving Holiday!


Patti McGowan
PPDB Board Member

​Did you know that the school does not always share information with all of the teachers that your child interacts with or the bus drivers that are driving your children to and from school.
 
For years, I was under the impression that our school district was sharing information about my son’s hearing and vision impairments with all school personnel that had interactions with my son.  It was only after I started working for the district that I found out that the IEP was only getting shared with his core team of teachers (this did not include his specials such as library, music, art or lunch and playground proctors).  Once learning of this, I was sure to add to my son’s IEP that ALL school personal that dealt with my son were to have access to his IEP to be made aware of his vision and hearing impairments along with special instructions on how to meaningfully interact with him.
 
I did not feel as though the bus drivers needed to know his whole educational plan, so I came up with another way to let them know about my son’s needs and to be assured that anyone driving my son would know about his needs.  Having a direct conversation with your daily bus driver and/or aide is the best way to communicate their needs, but there is always that day that the regular driver has to take a day off and you now have a sub who does not know you son/daughter and more than likely will not be given a lot of information about the run in which he/she will be driving that day.  To solve this issues, I came up with a sheet of paper that I give to the daily bus driver the very first day of school.  Knowing that the bus drivers keep a folder with there directions in the bus and in the transportation office, I made a sheet that I ask the driver to place in the very front of their directions folder so that anyone driving that route would be made aware of the special circumstances.  Please see below.
 
Have a great school year everyone!
 
Tammy Kitterman
Vice President, PPDB
 

Apple wants to teach coding to everyone...including those who are deaf blind.  Learn more in the link below!

https://www.usatoday.com/story/tech/talkingtech/2018/05/17/apple-pushes-teach-coding-students-who-deaf-and-blind/619269002/
​

There is a current song by Mary Gauthier titled, "The War After the War."  The first line of the song goes,
“Who's gonna care for the ones who care for the ones who went to war?”​

I love this song (and this line), because I and so many of my fellow comrades went to war and needed to rely on someone to take care of us after we came home.

But if you take out the word "war" and think of those of us who are caregivers to our children and grandchildren who are deafblind, it also really applies to us.  Who is supposed to care for us as we struggle to get through each day?  Who is supposed to care for us as we deal with school, IEPs, ISPs, life-threatening medical emergencies, doctors, nurses, insurance, providers and countless other issues?  Who is supposed to care for us as we lie awake at night worrying about the future of our deafblind child, after we have gone?

Thinking about it (and I have a lot over the years), the answer is probably different for everyone.  For some, it's a loving, supporting spouse and a strong marriage that gets them through the dark days.  Some can lean on parents, relatives, friends, professionals, to help.  Some have to struggle to find support.     
Mary and I are in our 70s.  We raised our granddaughter, Brittany, who is deafblind, from the age of three until 22, when she moved to a community placement (she is now almost 25).    She has a very involved health history, including a kidney transplant.  We still see Brit almost every Sunday (she "appropriates" a "souvenir" from our house and takes it in her backpack to her apartment every time she visits).  We will also celebrate our 50th wedding anniversary this June. 

One of the key lessons that we learned over all the years of dealing with Brittany's various health crises is that those who care for the ones who "went to war" MUST find ways to take care of themselves.  Whether it is a cup of tea or an "adult" beverage, or fifteen minutes to yourself every day, or a designated time to cry, or an evening out for yourself, you must invent ways to take care of yourself.

Because, to paraphrase Dr. Phil, "How are you going to care for others if you don't take care of yourself first?"

God bless all of you, who face issues and stresses that "regular" parents and relatives never have to deal with.  Please take care of yourselves. 

​Dear PPDB Members – 
 
As you know may or may not know, two Goals of the Pennsylvania Partnership for the Deafblind (PPDB) are to:
 
·       Collaborate with other organizations & groups to ensure that the needs & concerns of persons who are deafblind are addressed and
·       Educate policymakers on issues involving the deafblind.
 
With this in mind, will you join with the Deafblind Community and HELP ADDRESS the following THROUGH YOUR OWN ACTION?
 
Support The Cogswell-Macy Hill visit day, which is February 28th. If you can't be there, send an email on February 28th.
Please write to your 2 U.S. Senators and 1 member of Congress to support the Cogswell Macy Act (S.2087 in the Senate and H.R. 1120 in the House of Representatives).
Find your U.S. Representatives and Senators and their contact information here: https://www.govtrack.us/congress/members
Supporting information can be found at www.intervener.org, http://ceasd.org/child-first/alice-cogswell, andwww.AFB.org/MacyAct.
 
And … please support House Bill 2069
 
On February 8, Representative Miller introduced HB 2069, Printer Number 3015. Representative Miller is the prime sponsor. Representative Murt is one of the co-sponsors. We are seeking additional co-sponsors.
 
Right now, we need for all persons to email, call, and write to their representatives to encourage them to become co-sponsors on HB-2069, Printer Number 3015. The more state representatives who become co-sponsors the better chance the bill will become a law when the House votes on it. This is very important and must have action taken immediately. please call or email your Representatives immediately. We must work together for this bill to become law. The law provides funding for an SSP program. 
 
Find your U.S. Representatives and their contact information here: https://www.govtrack.us/congress/members
 
Let’s do this together!