Silent Passion: A StarBridge story

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Pre-order now. Congratulations to A. Keep up with A. Crispin news on Facebook here. If you've been looking to get your A. Crispin books signed, here's your chance!

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Whether you're an aspiring author or already have your feet wet, you won't want to miss Ann's writer's workshop this September in Atlanta, GA. Enrollment includes a critique of your submitted writings! Details can be found on the Courses page. Great news for StarBridge fans! Ann has recently concluded negotiations with Meisha Merlin to bring all 7 of the now out-of-print StarBridge novels back into print in deluxe omnibus editions. It will also include as a bonus a novella about Trinity by Kathleen, "Silent Passion". This four-in-one volume is scheduled for release some time in Ann's extremely happy that her beloved StarBridge series will be back in print, and hopes that the StarBridge readers will be pleased, too!

Click here for more info. Ann Crispin offers a special gift to fans this holiday season! Click here to check it out. Crispin will be appearing at two book signing events October 8th. The September 10th book signing event will be held from pm at Waldenbooks. Ann will be signing books at two upcoming live events. Visit www. Check out the first one on the Storms of Destiny page, and check out the interview with Ann for SciFi.

Check out the Courses page for more information. The wait is finally over! The younger the sibling without disabilities is, the more difficult it may be for them to understand the situation and to interpret events realistically. Younger children may be confused about the nature of the disability, including what caused it. As siblings mature, their understanding of the disability matures as well, but new concerns may emerge. They may worry about the future of their brother or sister, about how their peers will react to their sibling, or about whether or not they themselves can pass the disability along to their own children.

Historically, service providers have not included adult siblings in planning for supports and services with and for their brothers and sisters. Typically it is the parents of people with disabilities that are involved in discussion and decision-making about their family member. Over the last decade, more attention has been paid to siblings of people with intellectual and developmental disabilities. This is due, in part, to the fact that people with IDD are living longer and may need their siblings to fill their need for support and advocacy that was once filled by parents.

Additionally, and equally important - maybe even more important - is that siblings tend to have the longest relationship to one another than anyone else in their lives. There is a shared history and a shared story. Because of this, adult siblings of people with IDD bring a perspective that no one else can bring.

The sibling perspective is a peer, rather than a parental, perspective. Providers need to be aware of and sensitive to this when working with adult siblings for the first time. That is why SiblingResources. One more point to make: Adult siblings of people with IDD are juggling their own lives and families, maybe in combination with supporting elderly parents, and taking on the added responsibility of advocating for their brother or sister can be overwhelming for some. Adult siblings need to know that there are other adult siblings — lots of others — out there that they can connect to in multiple ways.

Access to local or regional sibling groups through formal and informal channels i. Included within the site are resources dedicated to disability service professionals and other sibling supporters who are interested in understanding and expanding the important role that adult siblings play in the lives of their brothers and sisters. Launched in December of , the website is being developed by the Lisa K. Yang and Hock E.

The mission of SiblingResources is simple: to connect adult siblings to one another in an expanding network throughout New York and beyond. Consequently, the website invites feedback and suggestions from visitors and members of the network to ensure that content reflects what is most important and needed by siblings and their supporters. As project director, my role is to make sure that SiblingResources accomplishes its mission and meets the expectations of our constituency. We intend to expand the network and the SibsNY presence within other regions.

Listening to the stories that are shared about growing up with and becoming and adult sibling of people with IDD are incredibly powerful. While every experience is as unique as the person sharing it, there is a common thread that binds adult siblings together. There is a magic that is hard to describe.

The response to this project has been remarkable. New registrations to the network happened almost the minute the site opened and was announced. There is a real hunger for this work. People have joined from as far away as Canada. Our goal for this project is to offer information, opportunity and resources that support siblings and sibling supporters gain a sense of clarity and balance about personally relevant issues of advocacy and the many ways in which to navigate them. Those who are interested in accessing SiblingResources. What About Me? We asked over fifty adult brothers and sisters: When you were younger, what did your parents, other family members, and service providers do to make you feel special and let you know they cared?

StarBridge Book One Author Afterwords

This is what they told us. The resources below were written by siblings, for other siblings. An opportunity to connect with other adult siblings of people with disabilities and those who care about siblings. On Saturday, May 13, more than guests gathered in the Grand Ballroom of the Holiday Inn Downtown to raise money to support Starbridge and celebrate the good work done by our Community Award recipients.

'A Quiet Passion' movie review by Justin Chang

Several of the award winners spoke about the importance of collaboration and acknowledged others who supported them along the way. All of the speeches shared the themes of continued hope for change and a future in which every person is supported and included. The silent auction offered art from local artists, recreation, sports, and entertainment packages.

During the presentation, Starbridge launched its newest video to highlight the personal stories of people who have come to our agency for help with education, employment, and living independently. An educational advocate will be available to speak individually with parents or family members to answer questions and offer ideas for you to address your concerns.

Join us at one of the locations listed below! Registration is not required. Pizza and beverages will be available at each location. Either a gas card or a grocery gift card will be available for each family that speaks with an advocate. Main St. Randolph, NY Ellicottville, NY Olean, NY Internationally respected scholar Dr. Al Condeluci will examine the importance of social capital for people who have disabilities, how friendships can be better developed, and how this leads to inclusive, vibrant communities.

Morning session—am The first session will cover the realities of relationships and the impact of social capital in our lives. We will examine social capital and the impact of community engagement. Afternoon session—pm The second session will focus on strategies of building social capital and ways to develop friendships.

Al will engage us in exercises to help frame concepts. Call to apply. For more information, go to www. At times, you may experience anger, frustration, impatience, embarrassment, or sadness regarding your sibling who has a disability. You are not alone. Your parents, family members, and friends may share some of your feelings; and siblings universally, regardless of ability, can identify with some of your difficulty. It may be very helpful to share these feelings with a parent or relative, a close friend, other siblings, a counselor, or other professionals.

They will help you realize that your reactions are normal and natural and suggest ways to work through your feelings in a healthy way and grow in understanding. While you will share much of your life with your sibling, it is good and healthy for you to have a life apart from your sibling. You will pursue your own interests, develop friendships, and enjoy activities apart from your sibling. Your sibling will develop a life apart from you, too. It may help to remember that your sibling who has a disability will at times have negative feelings toward you simply because you are human and will make mistakes.

You may have more in common than you realize. The class runs from April 3rd to September. A special introductory session will take place April in Albany and the class will continue via webinar sessions until September. To view a pdf version of this issue, please click here. I am serving my time with AmeriCorps at the Southeast Neighborhood Service Center where I assist with community events and city programs. I do volunteer; there is not a consistent place I volunteer at right now but if people need me I'm there.

What I enjoy the most is being able to help someone or an organization. Do you go to school? If so, what is your favorite subject or activity at school? I don't currently go to school; I graduated college in My favorite subject then was a class I took where we dissected different social movements. It was one of my only classes where I could openly express my passion for disability rights. When you were in college, how did you communicate your needs or any accommodations to professors or other school personnel?

When I was in college I had to cultivate a relationship with my professors, resident directors, resident assistants, and any campus staff that I encountered throughout my time on campus. I shared my frustrations, challenges, and needs with them; I was always open with them about my struggles on campus. I created a dialogue that hadn't existed on our campus. When you were in elementary school, how did your parents or family members advocate for your needs? My mom has always been one of my biggest advocates.

She never hesitated to tell people what I needed and if she didn't agree with something they were saying, she told them that. My dream for the future changes a little bit every day, but my dream for the future right now is to start a blog. Can you offer any advice for other self-advocates to communicate their needs or desires to others? Two things. One, don't ever be afraid to ask for help; no one does anything alone.

Two, you are the expert on all things about you, so don't be afraid to express your wants, needs, and desires. We asked our staff 'What gets in the way of good communication between families and school staff? What can help? Ask yourself, 'What would I think if someone sent this to me? Barriers to Effective Listening is a resource Maritza often shares with families. You can probably think of examples when you have listened ineffectively or not been listened to over the last 24 hours.

You can probably recognise the frustration and irritation when you know the person you are talking to is not listening to you. As listening is so fundamental to the communication processes it is important to try to avoid ineffective listening. You pay more attention to how you feel about the communicator and their physical appearance than to what they are saying.

Not focusing and being easily distracted , fiddling with your hair, fingers, a pen, gazing out of the window, or focusing on objects other than the speaker.

Starbridge (Starbridge, #1) by A.C. Crispin

Feeling unwell or tired , hungry, thirsty or needing to use the toilet. Identifying rather than empathizing - understanding what you are hearing but not putting yourself in the shoes of the speaker. As most of us have a lot of internal self-dialogue we spend a lot of time listening to our own thoughts and feelings - it can be difficult to switch the focus from 'I' or 'me' to 'them' or 'you'.

Effective listening involves opening your mind to the views of others and attempting to feel empathetic.

Preconceived ideas or bias - effective listening includes being open-minded to the ideas and opinions of others, this does not mean you have to agree but should listen and attempt to understand. Making judgments - thinking for example, that a person is not very bright or is under-qualified so there is no point listening to what they have to say. Preoccupation - when we have a lot on our minds we can fail to listen to what is being said as we're too busy concentrating on what we're thinking about.

Having a closed mind - we all have ideals and values that we believe to be correct and it can be difficult to listen to the views of others that contradict our own opinions. We understand the mix of emotions parents may feel as they participate in a Committee on Special Education meeting, whether it is their first or their fifteenth meeting. However, parents are crucial members of the team. We encourage parents to come prepared to ask questions and to work collaboratively with other committee members.

Only through teamwork can we work together to create an individualized learning program which can assist a child to achieve. Family-teacher team building early facilitates the continuation of the good start through the rest of the year! Great suggestions for starting things off on a positive note when school begins! Make a folder with a few pages of information about your child. This is a great place to put your child's picture. Don't use the regular school photo. Choose a photo of your child taking part in a favorite activity.

This makes your child a real person and provides additional information. Include a copy of your child's IEP. While it may be tempting to go through it or highlight portions for the teacher, resist this impulse. This gives the teacher the respect of assuming she will read it and note important points.

Bring your own IEP copy with highlighted points when you meet with the teacher. The teacher may notice and ask about the highlighted portions.


This gives you the chance to reinforce important information, without seeming to tell the teacher how to do her job. Add a page of information you may have gleaned from last year's teacher. This is information teachers often do not get. Indicate what worked well with your child and any other positive points from that year. You might include 1 or 2 examples of your child's work, either from home or last school year.

Pick ones that highlight noticeable progress or special talents. Indicate your willingness to your child's teacher to answer any questions she might have about your child. Provide your contact information, especially email. Many times this is the most convenient way for teachers to pass on comments or questions. It also provides documentation for your own files. If you provide phone contact information, include the best time to reach you.

Ask about any needs the teacher has in the classroom, for volunteers, extra supplies, etc. I used to hit some of the sales where supplies are crazy cheap and give the teacher a package of extra pencils, paper, glue sticks, paper towels, or facial tissues. Many times schools no longer supply these and teachers end up buying them out of their own pockets. Even if you bring in only a few things, it lets the teacher know you intend support, not conflict.

Follow your meeting with the teacher with a thank you note. Find at least one positive characteristic of this teacher to mention. Even if it is her great smile, or kind tone of voice, whatever you can find. Everyone has some positive things about them. Depending on your child and his characteristics, you may want to offer to come into the classroom early in the year to talk with the other students.

This works best with the younger grades but can be valuable for both the teacher and the child. I did this for many years, explaining that my son has autism, that he knows he has autism, that it was not catching, and some things they might see. It's always a good idea to meet with the teacher before school starts. Ask how you might continue to provide support to the teacher.

Again, refreshments never hurt! Address any overt problems immediately. Be respectful when you voice your concerns. If the teacher is the one noting problems, listen and ask clarifying questions. I think you said Provide information that will help the teacher get to know your child as an individual.

Include relevant information such as allergies, behavior issues tendency to be distracted, for instance , learning issues, or changes in family life. Ask the teacher about expectations regarding homework and what to do if there are problems with homework.

Find out the best way to contact the teacher. Ask for times when it is convenient to talk. Don't expect them to be able to talk if you happen to be at the school and run into them. Write short notes written or as an e-mail, if allowed and follow up with a phone message to the school if you don't get a response in a few days. In e-mail communication, be brief, stick to the point, and don't use animation, pictures or graphics. Stick to school-related information in e-mail.

Be positive and curious. Open with phrases such as "Can we talk about…? Don't be afraid to talk to other school personnel if needed. A school counselor might be able to intervene if you are unable to communicate with a teacher. Be a partner in your child's learning. Assist with homework, help your child learn time management skills, talk about school matters at home. Send a note of appreciation to the teacher when things go well in class and mention this to the principal. It may be difficult to hear what teachers have to say if they deliver bad news about your child.

Try to focus on solutions and work with the teacher to come up with a healthy plan to help your child learn. The most important ability to use in resolving problems with the school is to put yourself in the shoes of the people on the other side and answer these questions:. A low-tech, but effective tool: When Nick was in elementary and middle school, his one-on-one aide and I wrote to each other almost every day in a communication notebook.

Since Nick couldn't speak very well, the notebook was a vital tool in letting me know how the day went. It also served as an important means for the aide to ask questions, get my take on Nick's behavior or other concerns, or celebrate an accomplishment. I hope the communication tips in this issue will help empower you as you go forward this school year. Good luck to all our families!

Show Me The Way Home. Creating a Life after High School Series. Starbridge believes that every person should lead a fulfilling life in their community. That can happen when people who have disabilities have the right to direct their own lives, and when our community provides support wherever people live, learn, earn, and play. Building on our series, we will continue this year to host workshops and conferences to educate about and promote inclusion, belonging and self-direction.

Al Condeluci, PhD — Internationally known expert joining us in August to talk about ways families and professionals can support people who have disabilities in developing relationships as a natural facet of a fulfilling life. Thomas Pomeranz, Ed. Christopher Liuzzo — "'Dignity of Risk' and Self-Directed Living" — Fostering an environment that allows risk and encourages self-directed, individualized options.

If you or your company would like to sponsor this celebration, please contact Krystyna Staub at or email kstaub starbridgeinc. For updated information or to purchase tickets, please visit the event webpage. Our annual Community Awards honor people and organizations creating positive change in the lives of people who have disabilities. Award recipients are invited as guests to our Celebration of Champions. Each recipient is recognized for their contributions.

Would you like to nominate someone for one of our Community Awards? Please submit a Nomination. The packet is available on our website. Nominations must be turned in by March 17, Community Impact Award : An individual or organization who creates inclusive opportunities in the community for people who have disabilities. Education Award : A devoted individual in the field of education whose extraordinary efforts empower students who have disabilities to succeed.

Self Advocacy Award : A person who has a disability who leads the direction of his or her daily life through advocacy, personal choice, and responsibility. Youth Award : A person age 21 or younger, whose efforts make a positive difference in the lives of people who have disabilities.

Al Condeluci, PH. In his books, university lectures, consultations, and in nation-wide presentations, Al describes how people who have disabilities often have less social capital, and how damaging that can be. Research shows that health, happiness, jobs, advancement in work, and longevity are all tied to social capital.

Parents, educators, and health care providers focus on providing support to meet important developmental and educational goals. But one crucial area that is often overlooked — maybe because it can be difficult to achieve or requires extra cultivation — is social engagement, the need for friends and connectedness. Trainor, Ph. Our kids are smart and know their way around a computer.

We have barely mastered Facebook when we realize our kids are also using Instagram, Snapchat, and Twitter. We need to protect our kids and make sure they are making good decisions. This is not always easy! Suggested Audiences: Pre-Kindergarten and older. Suggested Audiences: Ages That could be any interest or activity: reading, golf, computers, music, dance, nature walks, drawing, movies, or video games, etc.

Is there a club or group in the community focused on this activity? It might be a book club, drumming circle, gardening club, or hiking group. What is expected of people in this group? How do the members behave?

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What jargon do they use? Share this information with the person who has a disability as it relates to them. A gatekeeper is a person already in the group who can introduce a new person to the group. Maybe your neighbor or co-worker pitches for a community softball team. He could be a gatekeeper for your daughter who wants to play softball. Everyone in the group knows the gatekeeper and will readily accept the new member if the gatekeeper brings the person in.

I chose a career in Human Services because I wanted to help people be more included in the greater community. Growing up I witnessed how people treated my cousin Carrie, who had Down syndrome, and although she was a natural part of our family, often the greater community members treated her in negative and distantiated ways. These negative behaviors prompted me into the field. Initially, I was taught that the change that was needed for Carrie to be accepted rested more with how she functioned and behaved. The manifestations of her Down syndrome suggested that she needed to learn things to behave more "normally" to fit into the community.

After years of trying this route it became clear to me that the change that was needed did not lie with Carrie, but rested more in the behaviors of the greater community. This kind of change, we call "macro change," is much more challenging and hard to realize. It demands a shift in thinking, and moving outside of the box. This kind of change also starts with an external recognition that seems to defy that which seems clear. It is captured in a quote I recently saw attributed to Henry Ford.

He said: "The light bulb was not the result of continuous improvement of the candle. Einstein famously said: "The problems we face today cannot be solved with the same level of thinking that created them. People in the greater community see disabilities as the problem, when, in fact, the real problem might be their attitudes. So the next time you are looking at a problem that needs solved, or a change that needs to occur, look again. It might be that the solution lies in another place.

Social networking allows people to keep up with current friends and make new ones. When used in the right way, social media can increase self-esteem and help someone feel less isolated. Creating your own "home page" allows people to express themselves and discuss their interests. They can join groups, support fan pages, and find out about other people's interests. Technology is evolving faster than ever. As teens and young adults adapt to new technologies or new applications of existing technologies , they will be better equipped to adapt to future technology.

Young adults in secondary and post-secondary education will often use social networking to discuss schoolwork and share discussions about assignments. Young adults can gather information about topics that are hard to discuss with others, such as drug use and sexual health.

Social networking can open up a new world of communication, integration, and community participation. Young adults can express themselves, including their thoughts and feelings, more easily and without fear of the rejection or stigma they may experience in real life. Research also suggests that these young adults may be more willing to ask for help online than in face-to-face situations.

Furthermore, young adults who experience difficulty with social skills can socialize anonymously, and can experiment with different personas and practice initiating and maintaining online friendships. They can also respond to others by taking advantage of having time to review and edit communications before sending it on. Ultimately, this skill may carry over into "real life" and give a sense of new courage to make and maintain friendships in everyday life. Young adults need to be aware that information given out online could also put them at risk of victimization.

People looking to do harm could use posted information to identify them, gain their trust, or pretend to know a young person. Encourage young people to privatize their online social networking accounts such as Facebook and Twitter. Harassment may occur online only cyberbullying , or it may spill over to offline bullying committed by a person who has located his victim online. Cyberbullying can cause significant emotional harm resulting in depression, anger, school avoidance, violence, and suicide.

Retrieving information that others have read and captured is nearly impossible. Inappropriate pictures, captions, and comments could come back to haunt youth as they start applying to colleges or looking for jobs. People tend to be far bolder and less discreet with information shared online versus in person. This means there is a greater risk of giving out information including the presence of a disability that, given a second thought, we might not have wanted to disclose.

Social networking may further isolate those who may already feel isolated or not included, and can ultimately lead to depression and loneliness. Also, young adults who have disabilities must make important life decisions regarding disclosure of their disability if, how, when, and to whom. Unintended disclosure is possible by posting pictures or becoming fans of disability support groups, for example. While this might not be an issue, it makes the "disclosure" discussion even more important. When a child qualifies for special education services, federal law requires the development of a document, called an Individualized Education Program.

This workshop will prepare participants to actively participate on the IEP team. Extraordinary parenting responsibilities create extraordinary pressures on parents. At the same time, parenting a child with special needs requires energy, focus, and enthusiasm. The better off we are emotionally and physically, the better off our families will be.

Join us to discover positive ways to cope with and effectively manage stress. Please request special accommodations at least two weeks before the event. Did you know there is a difference between general discipline procedures and discipline procedures for students with disabilities?

Children with disabilities have specific rights under state and federal laws when it comes to suspensions and school discipline. This workshop will provide an overview of these rights and the process used for discipline and suspensions. Participants will learn about Functional Behavioral Assessments and how to create a proactive behavior management plan to help avoid future conflict.

Registration is required. This workshop is FREE to family members. To register, please go to the event calendar on our website or call Registration at Refreshments will be served. Do you come away from meetings not saying what you intended or feeling as though your viewpoint is misunderstood? Do you listen to what other team members say?

How do you respond? Communication is key to effective partnerships. Learn to recognize the barriers in communication that can get in the way of collaboration and positive outcomes. Strengthen your advocacy skills by learning effective and collaborative communication strategies. To register please go to the event calendar on our website or call Registration at Pizza and beverages will be available. Either a gas card or a grocery gift card will be available for each participant. An advocacy notebook is an indispensable tool for every educational team member, especially families and educators.

Combining individual vision, family input, educational recommendations and professional references creates a powerful springboard to advocate for your student. This workshop provides participants with the skills, knowledge, and resources to maintain the documentation and records needed for effective advocacy. Participants will leave equipped with a notebook, handouts, reproducible forms, correct educational and legal terms, and greater confidence in communicating with the whole team. Take part in a free, seven-session training to learn about the special education process and acquire skills to effectively advocate for your child!

This series is open to families of children with developmental, educational and suspected disabilities. Friends Helping Friends is a group for self-advocates and their supporters. Friends believe all individuals have value, talents, and gifts. We will not be defined by a label or the limitations of disability. We believe that with determination, we can achieve anything we put our minds to. Join us on Facebook by liking the Friends Helping Friends page.

Are you looking for opportunities to learn from our experienced presenters? We have informational videos and recordings of many of our webinars available free of charge. See our website for more: www. As parents of children who have disabilities, we are often concerned about them forming meaningful relationships. Our kids may have communication difficulties, cognitive and emotional challenges, or physical barriers that can prove problematic. Step 1 in Building Social Capital See page 4 is to find what interests the person has in common with others.

Step 2 involves finding a matching community group that meets on a regular basis. In my family's case, our son, Nick, has a passion for movies. Nick's Community Hab staff person, Kristen, decided to help Nick facilitate the creation of a movie club. She asked Nick to pick out movies he wanted to share and to type the titles. While he typed titles, Kristen found an online tool that alphabetized the list. A few weeks later, they approached our town's library and asked if the library might partner with Nick by providing a space for him to share movies from his collection.

He presented the librarian with several pages of typewritten movie titles to show how much he had to share. After a couple of meetings and conversations, Nick's Action Movie Club was created. After the initial meeting in February, Nick's project has already taught him how he can transform a mostly solitary pursuit into a social one. By sharing with others, Nick is taking his love of movies to a new level. Even the simple act of inviting Facebook friends to attend has already opened up some new conversations.

We hope that this endeavor will help to build Nick's social network and provide community members an enjoyable, free, action movie per month. I'll let you know in future issues how the club is progressing. Would you like to ensure that Starbridge can support people who have disabilities and their families in finding their way to the HOPE and the HOW for generations to come? A Legacy Gift is a thoughtful commitment you can make now that will support Starbridge's work for the long-term. I have served on the Board, but I've also been on the receiving end of services.

I'm grateful to the staff for the excellent service provided to my family. I wanted to ensure its continuation long after I'm gone so that children like my son receive the support they need to succeed as adults. What better way than to name Starbridge as a beneficiary on my life insurance policy? Guidance provided by Legacy Giving Advisory Council. A gift of appreciated securities to Starbridge is another common way to further your charitable legacy and may eliminate the tax you might owe on the gain. By gifting your stocks, bonds, ETFs and mutual funds to Starbridge you will owe no taxes on the gift and you are eligible for a charitable deduction equal to the fair market value of the securities on the date of the gift.

A gift of proceeds from the sale of securities you hold also benefits Starbridge, although it may be less tax-beneficial to you than the gift of stocks. To gift or sell securities to Starbridge, we recommend you consult your financial advisor. Starbridge will be pleased to work with you and your advisor to implement this plan. We've all heard it said that everybody should have a Will. It's true though! Preparing and signing a Will that includes charitable bequests is the most direct way to leave a meaningful legacy.

You can name Starbridge in your Will to receive a specific dollar amount or a percentage of your estate. Either way, you are ensuring that your desire to do good lives on and you are providing your heirs with an example of the values and ideals you hold dear. It's as simple as that! Take the time to discuss your plans for sharing your worldly possessions with your loved ones and financial and legal advisors before preparing and signing your Will.

To leave a bequest to Starbridge through your will, we recommend you consult your attorney and financial advisors. Real property — your residence, vacation home, commercial property, commercially developed raw land or farm land — is often the most valuable asset for most people.