Don Meyer Training at the Brooklyn Public Library May 8 & 9

On May 8 & 9, after a fabulous sibling day at the YAI conference, Don Meyer will conduct a two-day Sibshop training for siblings, parents and service providers. Find out more at http://siblingsupport.wetpaint.com/page/Workshop+Series - Don doesn't get to NY very often so please take advantage of this wonderful opportunity! Hope to see you there!

The Sibling/Parent Disconnect: An Age-Old Issue

The other day, my supervisor told me that he found a book in the swap pile in the laundry room of his apartment building. It was called "It Isn't Fair: Siblings of Children with Disabilities" (you can find it here, on Amazon). Although it was first published in 1993 by Exceptional Parent Press, the cover photo suggests the 80s and the content goes back to as early as 1972. It was really interesting to read an article orginally published in Exceptional Parent magazine which was an interview with four siblings in their 20s. Many of the issues resonated with me and it struck me that sibling issues are shared by sibs not only across state lines and oceans, but across the decades. What was even more interesting to me was the case studies with parents, who often had no clue about what their typically developing children were feeling and why. Although they had a real desire to help their children, they genuinely had a lot of trouble understanding how having a brother or sister with a disability was impacting their other children. I believe that holds true today, based on the conversations I've had with many parents and even from reading a recent book chapter by a parent advocate. Reading his accounts of raising a child with autism and his typically developing brother, and seeing the boys' relationship through their father's eyes, was a bit unsettling. The concept of "fair" is tricky to begin with, but it seemed to me that there were some pretty high expectations for a typically developing three-year-old, without a lot of understanding of HIS special needs. This is why it is so important for siblings to share their stories with parents, service providers, and each other. We have a lot to offer our brothers, sisters and families. With the right amount of encouragement, support and room to grow into our own selves, siblings can play a very positive role throughout their siblings' lives.

Reduced Hotel Rate - YAI Conference

From the YAI Confernce (it was a battle but they succeeded):
We are pleased to inform you that the Crowne Plaza Manhattan Hotel has agreed to offer a reduced rate of $255.00 (plus applicable taxes) per night for YAI conference attendees. To receive this rate call ASAP and no later than April 10. If you have already reserved at the higher rate the Crowne Plaza has informed us that the rate will automatically be adjusted to $255.00. To make a reservation call: 1-800-243-6969 and ask for the YAI Conference Discount Rate.
www.yai.org/conference

May 7: A Day for Siblings with Don Meyer at the YAI Conference in NYC

A Day for Siblings: Thursday, May 7, 2009
at the YAI/NIPD Network International Conference
Crowne Plaza Manhattan Hotel, Times Square, NYC
www.yai.org/conference



Don Meyer, Director of the Sibling Support Project,
Brothers and Sisters of People with Special Needs:
Unique Concerns, Unique OpportunitiesThis core workshop, led by Don Meyer, world renowned expert on sibling issues and creator of Sibshops, uses a lively large-group discussion format to help adult siblings of individuals with developmental disabilities, parents and service providers discuss the concerns and opportunities frequently experienced by brothers and sisters of people with special needs. Workshop participants share what they have observed in their families or the families they serve. Participants also learn what researchers, clinicians, and siblings themselves say about growing up with siblings who have special needs. Implications for parents and service providers will be discussed throughout the workshop. Session #147, 10:30a.m.-12:00 p.m.

Future Planning: Talk to Your Parents Now!
Siblings’ Stories of Different Approaches and Outcomes
Today, individuals with developmental disabilities are living longer than ever thanks to better community services and supports. As parents age, siblings often take on greater caregiving activities and worry about the future when parents are gone. A panel of siblings will discuss the importance of future planning and share the very different approaches their families took as well as outcomes.
Session #131, 9:00-10:15 a.m.

Sharing the Sibling Experience:
Individuals with Developmental Disabilities and their
Typically Developing Siblings Discuss their
Past, Present and Future TogetherSiblings often share the longest relationships and most special bonds. During this session, siblings with and without developmental disabilities will share their thoughts and feelings about their past, present and future together. Attendees will enjoy hearing their stories and experiencing what all of us can learn from one another.
Session #152, 1:15-2:30 p.m.

At the end of the day, presenters and attendees who would like to continue to share stories will gather for a casual dinner. Information on location and cost to follow.

Download the conference brochure and registration form (p. 23 of brochure) at www.yai.org/conference. Please fax registration forms to Tina Sobel, 212-629-4113. Family members of individuals receiving services through the YAI/NIPD Network and our staff attend for free. Student and group discounts available. For more information on sessions or the dinner, please contact Emily Holl, 212-273-6534, or Emily.Holl@yai.org.

Leadership Training Opportunity for Siblings

Here's a great opportunity! The LEND (Leadership Education in Neurodevelopmental and related Disabilities) Training Program at Westchester Institute for Human Development and New York Medical College, in Valhalla, NY, provides an opportunity for adult siblings to develop leadership knowledge and skills in the area of developmental disabilities. LEND trainees are an interdisciplinary group of health and education professionals, graduate students in the health and education professions, and “family specialists" (parents and adult siblings of people with disabilities) who go on to leadership roles in advocacy, clinical work, education, policy-making, research and training. For more information: call 914-493-8175 or go to http://www.wihd.org/edutrain/edu_lend.html.

Scholarship Opportunity for Sibs in NY!

I just learned about a great opportunity. AHRC, an agency in NYC that provides services to individuals with developmental disabilities and their families, has a $1000.00 scholarship for siblings called the Gorelick Scholarship. It is primarily for educational purposes, not limited to attending school. This is a great (and rare!) opportunity, so check it out if you think you might be interested! Go to the AHRC Web site, click on the "siblings" icon and the information is first on the page, where you can also download the application.

Don't Wanna Be a Sib Today

When it comes to being the sibling of an individual with a developmental disability, I am about as positive as they come. People who have met my brother Peter might understand why. I adore my brother and I appreciate how well he knows me, in his own way, and his unmistakable, unconditional love. I embrace the role that I will assume -- that I am beginning to assume, really -- in helping to ensure that he can be as independent, productive and happy as possible in the future.

However, on some days, I am overwhelmed by the responsibility and resentful of my role as a sibling which I did not entirely choose. These are the days that I wake up and say, "I don't want to be a sib today."

The day after Peter departs from a weekend visit is usually one of those days.

His most recent trip to NY was a blast. As soon as I saw him at the train station, ambling toward me wearing a giant smile, a familiar rush of happiness washed over me. "There's my brother!" I thought. During the weekend we enjoyed a hockey game with friends and family, ate enough junk food to last us both a good while, and spent time with a new friend of Peter's who we are hoping will one day be his housemate. Just seeing the two of them together -- talking about movies and impersonating actors, savoring chocolate cake, laughing at each other's jokes -- was entertainment in itself.

As much fun as we always have together, Peter's visits usually entail a good deal of work and some degree of worry on my part. There are hygiene issues to consider (after a sweltering summer day some years back, when I thought that Peter was going to take out an entire subway car by virtue of his raised arm, we have created a whole shtick regarding deodorant that cracks us both up every time), and reminders about subway safety. There are social cues that he will sometimes miss, and situations in which he would literally talk about baseball for hours, regardless of audience or the conversation they may have been having, were it not for my attempts at tactful intervention. There are stops along our way to buy bottled water or potato chips, and conversations about why it is just not necessary to buy six of each, right now, just because they are on sale. There is the wake of empty water bottles and crumpled napkins throughout the apartment.

I know that compared to many siblings who have brothers and sisters who require way more fundamental, hands-on care, I have it pretty easy. But by the time Peter leaves after a visit, my internal fuel tank is usually empty and I wake up the next day not wanting to have anything to do with being a sib.

So what do I do? I let myself off the hook and give myself a break. I push thoughts of Peter and the unknown future to the back of my mind, and focus on other, preferably lighter things. I read a novel or a vapid entertainment magazine. I go for a run. I shop with friends. I do something that makes me happy, something to put fuel back in the tank and take care of me.

Many of the siblings I've met over the years have had a really hard time with the idea of putting fuel in their own internal tanks. The idea of doing something purely for their own enjoyment seems selfish to them. I can completely relate, because I used to feel the same way. How could I possibly sit around and ENJOY myself when there was so much that I could be doing to help my brother?

Somewhere along the line I realized that if I didn't take some time out to take care of me, I was going to burn out and be unable to do anything for anyone, least of all Peter.

So now on the days that I wake up and that little voice inside says, "Nope, don't wanna be a sib today," I listen to and indulge it, knowing that when I am ready, I will put one foot in front of the other and continue along the path that will hopefully lead to a bright future for both of us.