Wednesday, May 28, 2014

Dignity and Rights for All

Washington State advocates are taking the lead once again. After meeting with Washington State Allies in Advocacy, U.S. Representative Derek Kilmer entered the Proclamation for the Dignity and Rights for all Human Beings into the Congressional Record.

In his address to the Speaker, Rep. Kilmer states:

"I was pleased to meet with individuals from my region and the Washington State Developmental Disabilities Council about important issues concerning people with developmental disabilities.I support their advocacy effort for people with developmental disabilities and programs that support them. The Washington State Allies in Advocacy has issued a Proclamation for the Dignity and Rights for all Human Beings and I am honored to submit a copy."

As the saying goes, Change is made by those who show up. Hats off to this group of committed advocates for showing up and being counted.

To view the proclamation, visit the Allies in Advocacy Proclamation page.
To add your name, or your organization's name, to the list of signatures, click here.

Monday, May 26, 2014

Does He Ever Get Tired?

Nate is definitely putting the "long" in "long weekend"! Is it bedtime yet? Hope you all had a nice Memorial Day!

Sunday, May 25, 2014

Parent of a Hitter by Rachel Nemhauser

Seven years ago at a weekly playgroup Nate hauled off and hit another child.  He had done it before and would go on to do it again, but this time was noteworthy because this time the child's mom got mad.  She may have raised her voice at Nate and she definitely turned her back on me when I tried to apologize and explain. Embarrassed, tongue-tied and frustrated, I slunk out of the room and went home, once again mourning the loss of the typical life I thought I'd have before Nate came along.

Being the parent of a hitter (or a biter, spitter, scratcher, hair puller, etc)  is really hard.  It means never allowing yourself to be more than an arm's lengthy away from your child.  It means constantly apologizing and trying to explain.  It means few playdates and even fewer friends. Even the most compassionate and understanding parents will react if their child is getting hurt. Most will force a smile and pretend they're fine with it, but it's obvious they're not.  A few will take their kids and leave.  One over-protective father might threaten to call the police (actually happened to me). In the case of the mom from seven years ago, she requested that Nate not be allowed to come back to the playgroup. Ouch.

This was a first for me.  Nate wasn't wanted.  A member of my community had proposed that this small part of the world would be better without my child.  My heart broke, but something else happened too: I gained a mission. I knew my sanity and Nate's success relied on our ability to be a part of the world, and I knew that the world would be better with Nate included in it.

We went back to the playgroup and I worked 10 times harder to ensure Nate behaved and played safely.  I redoubled my efforts to find recreational activities for preschoolers with disabilities.  I started writing about Nate in an effort to educate our community about his strengths and challenges, and to ensure people saw him as a whole person who just happened to be developmentally disabled.

For years I avoided the mom who got mad, although we ran in the same circles and came in contact with each other regularly.  We never talked about what happened, but I continued to do what I could to make sure Nate safely and meaningfully fit in with the crowd. I never forgot my hurt feelings, but as the years went on the wound was less raw, my feelings less bruised.  I was able to understand that at her core she was another mother lion, as powerfully devoted to defending her cub as I was to defending mine.

Over time something interesting happened: We got to know each other. We are both parents in the same small community. Our kids may not share developmental challenges but as parents we share a passion for raising gentle, loving and safe kids. We have similar backgrounds and values, and even overlapping views on how to raise great children.  When she was worried about the developmental delays of one of her children, she asked me for advice.  When I needed to hire someone for a job, I hired her.  I couldn't have predicted it, but we were becoming friends.

Two weeks ago, long after I stopped expecting or needing one, I received an emailed apology in my inbox. The mom who once literally turned her back on me said she has long regretted that interaction seven years ago, and that she learned so much from watching Nate and I non-confrontationally face the challenges around us.  Interestingly, she admitted she probably would have written me off long ago if I had been more aggressive in my reaction to her behavior, and that it was my patience and kindness that won her over!

I am blown away by her courage to apologize for something that happened so many years ago, and her willingness to allow room within herself to learn and grow.  I'm also gratified to know that because of my own hurt and grief I've been able to live my life in a way that leads by example.  For me there is no room for nastiness, aggression, retribution or hatred.  Instead, I've learned that living my life kindly, compassionately and honestly will always be what is best for Nate.  And that's all this Mama Lion could ask for.

Thursday, May 22, 2014

We're People, Not Jars

Ten years ago, a group of Washington state citizens with developmental disabilities decided to do something about the words people used to describe them. They also decided that they would be the ones to lead the charge by spearheading state legislation to prohibit the use of derogatory labels in state laws.

It was something that had never been done before, not in this state or the country, and it happened during the early swell of an historic and unrelenting economic downturn, worsening partisanship, and what would become routine legislative logjams in our state (and later, the nation). Doing something positive and proactive just wasn't on anyone's radar, but they felt up to the challenge.

"Don't label us," their campaign slogan proclaimed. "We're people, not jars." They called the legislation Respectful Language.

Despite having gotten broad bi-partisan sponsorship—and, with the assistance of then Senator Debbie Regala, having kept the bill from getting a fiscal note that would have meant certain death—the Respectful Language bill faced tough challenges and surprising twists.

The following video captures this remarkable effort and serves as a reminder that, regardless of status or influence, every citizen has a right to speak up, take action, and make change happen.

Monday, May 19, 2014

Healthy Relationships Series

iStock/Getty Images
About a year ago, Informing Families Building Trust sent out a survey to families, asking what they would most like to know. The results of that survey, along with direction from the IFBT advisory committee, showed a significant need for information about a difficult topic to talk about: sexual development and (along with that) abuse prevention.

The concerns were many:
  • What do I say to my child about his/her changing body?
  • How do I keep my child safe, but also allow him/her to have a life that's as typical as possible?
  • How do I know if s/he has been harmed or is in harm's way?
  • Is there such a thing as too early to start talking to my child?
  • What are age appropriate words to use?  

The answer is simple, but not easy: Educate. Educate. Educate.

Theresa Fears, MSW, of The Arc of Spokane's Partnership 4 Safety program, met with the IFBT advisory committee and agreed to help shed some light on this very challenging topic. She has contributed informational one-pagers (bulletins) available for download on the IFBT website, called Healthy Relationships.

Healthy Relationships is positive approach to body/boundary awareness and relationship education—teaching healthy relationships, rather than focusing solely on abuse. You can find the first two bulletins for download here.

IFBT wants to hear from you. Please let us know what you think about this and other topics. What are the issues you most want to learn about?

Monday, May 12, 2014

Living an Inclusive Life: Brian's Story

Last fall, I had the privilege of interviewing twenty-five year old Brian and his mother, Teri, about how he pursued his dream of living independently, with support from family and a few services from the state Developmental Disabilities Administration (DDA).

Brian shares a duplex with one roommate, once held a job at the police department as a data entry clerk (he types 60 words per minute) where he earned more than $11 dollars per hour, and currently works at his local community college in the financial aid department.

He receives Medicaid Personal Care, which, combined with support from his parents and siblings who live nearby, gives him the freedom and independence he and his family have always envisioned. It hasn't always been easy, and, as Teri explains in the video created for IFBT's Community of Practice, it takes years of planning and practice.

Below, Teri talks about her family's guiding principles in helping Brian create an independent life:
In our family, as [Brian's older brothers] learned to ride a bike, Brian learned to ride a bike. As they learned to skateboard—and this makes my friends crazy—Brian learned to skateboard. And, in the process of 8 months, he actually broke his foot twice. And he was in a cast.

One of the things that we decided early on, number one: It's not about us. It's about Brian.

The second thing: You have to do risks with your child.
Obviously, you want to do them when you still have some control and you can support the risk.

We had skateboarding lessons in our front room. And then he took it outside, and the very first time he was outside, he broke a foot. So he was in a walking cast. When that healed, he did it again. He practiced and practiced. He broke his foot again. And Brian decided that he didn't want to do skateboarding anymore. Brian made that decision.

So, we did:

1) It's all about him.   

2) You have to let him take risks.

And then...

3) You have to have 10,000 eyes on him.

You have 10,000 eyes on your child. You have 10,000 eyes on your other kids. These are the people that keep an eye on him and intervene in case something happens.

So, in school, Brian was in regular classrooms with assistance. Because the people he was going to live with and encounter in the community were those people he was in school with.

He met everyone. And when he went through school, those different people graduated and started doing all the things in the community that are things Brian involves himself in.

One of the bus drivers is a young man that Brian went to school with. His name is John. So Brian sees John when he goes out.

The grocery store clerks are people he went to school with. So he sees them and he talks to them.

They're all out there, keeping an eye on him, and helping him make decisions, and just watching out.

For more of Brian's story, watch the IFBT Community of Practice video.

Friday, May 9, 2014

Community of Practice: Family Matters

It should come as no surprise that the majority of individuals with Intellectual/Developmental Disabilities (I/DD) live with and receive daily care and support from their families; and yet, despite the vital role that families play in supporting their sons and daughters with I/DD, states have fallen short in building systems or assisting families in developing community connections that recognize and support their commitment.

Our state’s No Paid Services Caseload is filled with thousands of such families who are trying to avert crisis and keep the family intact. Many have made community connections that meet their needs but others are holding on in the hope that one day funding for services will reach them.

Addressing the lack of community connections and funding is essential, and our state has been working hard on that front; but to reach a long-term solution, we need a comprehensive system that reflects the values and realities of today’s families.

In an effort to focus on the needs of families, the Developmental Disabilities Council and the Washington State Developmental Disabilities Administration, applied for and received a five-year Community of Practice grant to explore different ways of supporting families across the lifespan of the individual.

Community of Practice Goals:
  • to create a model framework for supporting families;
  • to develop and sustain exemplary family  support practices;
  • to build capacity within states and the nation to create policies, practices, and systems that assist and support families;
  • to capture and share lessons learned and products to develop, implement and sustain exemplary practices to support  families and systems.

A kick-off event was held for the Washington State Community of Practice last fall. Almost 100 individuals (including self-advocates, family members, community organization representatives and more) from across the state came together to begin the discussion of how Washington will work to improve systems of support for people with developmental disabilities and their families.

Community of Practice Wants to Hear From YOU

The DD Council is planning to host listening sessions throughout the state on topics of important to Community of Practice. If you are interested in participating in a listening session, or would like to join the Community of Practice listserve, email Ed Holen at: ed(dot)holen(at)ddc(dot)wa(dot)gov.

Monday, May 5, 2014

In the News: Children's Author Trudy Ludwig Sets the Record Straight on Bullying Prevention

A few weeks ago, a Nebraska elementary school made quite a splash when it sent home a flyer on how to deal with bullying. Great, right? Well, no. Not when the message broadcasts ways to turn “bullies into buddies” and includes advice that reads like a primer on how to be a better target, with tidbits such as: 
  • Do not tell.
  • Treat the person who is being mean as if they are trying to help you.
  • Don’t be a sore loser. 
Parents were outraged, and rightly so. Later, the school district apologized on Facebook for what it termed inaccurate information; later still, that apology disappeared. That these educators missed the boat with such wild inaccuracy is baffling, to say the least. Are schools (and we, as a society) that far behind in understanding how to handle such a pervasive social cancer, or was this just one of those teachable moments we can all learn from?

I reached out to children's advocate and author, Trudy Ludwig, to get her take on the notice and offer some sane advice for parents of children who experience the highest prevalence of bullying: students with disabilities.  

GJ: What was your reaction to the Nebraska school’s tips for turning bullies into buddies?

TL: I was shocked, angry, and deeply disturbed by these tips. Unfortunately, some highly misguided, uninformed adults actually thought these tips would be helpful in addressing and preventing bullying when, in fact, their so-called “Rules” have just succeeded in further victimizing the bullied child!

GJ: Considering that the prevalence of bullying against children with intellectual/developmental disabilities is 2-3 times higher than other students, what steps can parents take if they suspect or know their child is being bullied? 

TL: Be informed, aware, and active:

  • Learn more about the laws that apply to disability harassment and check out the IEP resources at your disposal to help you work with school staff in bullying intervention and prevention.
  • Pay attention to sudden and marked changes in your child’s mood, behavior, and/or appearance (torn clothing, bruises, or cuts).
  • Take advantage of resources (listed below) to educate yourself and your child as to what bullying is and isn’t.
  • Calmly listen to your child’s concerns without judgment, so that he/she is more likely to share with you his/her experiences and feelings.
  • Gather as much information as you can about the bullying incidents for documentation purposes: What were the specific hurtful behaviors done to your child? Where did the bullying take place? When did it take place? How often? Who, if any, were the witnesses (bystanders) of the bullying incidents?
  • Ask your child which adults at school he/she feels safe having you talk to about these incidents to protect your child and help the bullying child end his/her hurtful behavior.

GJ: Can you share a little bit about how your books help parents open up a discussion with their children about such a complex and pervasive problem?

TL: For years, children’s literature has been used by counseling practitioners, teachers, librarians, and parents to foster empathy and perspective in youth. Stories help kids emotionally connect with and gain insight into others’ thoughts, feelings, and behaviors in a safe social setting. In her book, Treating Child and Adolescent Aggression Through Bibliotherapy (Springer, 2009), Dr. Zipora Shectman states, “Through the imaginative process that reading involves, children have the opportunity to do what they often cannot do in real life—become thoroughly involved in the inner lives of others, better understand them, and eventually become more aware of themselves.”

As an author, I want children to connect with my stories, with the characters in my stories, and with each other. My goal is to help young readers understand the difference between “helpful” and “hurtful” behaviors, and to seek help from the caring allies (parents / educators / peers) in their world to help them get through the hurt--with their dignity and safety intact.

GJ: What are some good sources of information on bullying for parents?

TL: I have an extensive list of recommended organizations , websites, and recommended readings on my website. But if I had to narrow it down, here are some of my favorite resources:

  • Bullied: What Every Parent, Teacher, and Kid Needs to Know about Ending the Cycle of Fear by Carrie Goldman (HarperOne, 2012)
  • 8 Keys to End Bullying: Strategies for Parents & Schools by Signe Whitson (W.W. Norton & Company, 2014)
I also recommend parents to gift schools or their favorite educators the following books to help them in their ongoing efforts to create a safer social-emotional learning environment:
  • Youth Voice Project: Student Insights into Bullying & Peer Mistreatment by Stan Davis & Charisse Nixon (Research Press, 2014)
  • Schools Where Everyone Belongs: Practical Strategies for Reducing Bullying by Stan Davis (Research Press, 2007)
  • School Climate 2.0: Preventing Cyberbullying and Sexting One Classroom at a Time by Sameer Hinduja & Justin Patchin (Corwin Press, 2012)
  • Empowering Bystanders In Bullying Prevention by Stan Davis (Research Press, 2007)
  • Positive Relations @ School & Elsewhere by Nancy Willard (Embrace Civility in the Digital Age, 2014)
    Trudy Ludwig is a children’s advocate and bestselling author of numerous books to help kids cope with and thrive in their social world. For more information about Trudy and her books, visit her website