Tuesday, July 14, 2009

Sibs of Children w/ Disabilities

A topic that keeps popping up on internet autism-related chat groups lately is the topic of siblings of children on the autism spectrum. My favorite resources regarding autism are adults who have been diagnosed on the autism spectrum. They're the experts. So why shouldn't we go to adult siblings for insight about the sibs in our family? For several years, I had no idea that so much research has been done on siblings and that there are resources and supports for sibs. There are! I have some notes from presentations over the years, with a few resources for families, and in no particular order, I'll share them with you now. My notes are research starters, really, and not end points. I hope the notes are helpful to you, and if you have information that I didn't include, if you'll forward it to me, I'll add it.

Added 15-Oct-1o
Diary of a Mom ended a week spotlighting siblings with this information-filled post:
What Siblings Would Like Parents and Service Providers to Know

Added 30-Jun-10:

Added 09-Jun-10:

Added 01-June-10:

I have twice had the privilege to attend in person a conference with Sibling Support Network and SibShops founder Don Meyer. Meyer met with a small group of parents at a weekend long SibShops at a conference called, Relatively Speaking, held every other year in Grand Rapids, Michigan. Relatively Speaking may be the only conference of its kind, focusing totally on siblings of a child with an illness or disability. (Every state should sponsor a similar conference! The next Relatively Speaking conference is scheduled for October of 2009.)

Meyer reports about siblings that their questions and experience often closely parallel that of the parent. He says that when a child is diagnosed with a disability or an illness, one of the very first steps that happens is the parent is introduced to an other parent, sometimes individually, and often, in terms of a support group, where parents can find support and information from other parents who are already on the pathway. He said that siblings are almost NEVER given that same support, even though they have a parallel experience and questions similar to those of the parents.

Sometimes, we as parents and professionals forget that sibs are active participants in what happens in the family, too. SibShops is one answer to this issue of lack of support and policy for siblings of persons with illness or special needs. He said that siblings will have the longest relationship with the person with special needs over the course of the lifespan, and while we don't want to burden the sibs with too much responsibility and information at a young age, we need to support them appropriately.

He reported to us the experience of adult sibs whose parents never ever gave them information, never included them in much to do w/ the sibling or the special need, and then the aging parents became unable to care for the child w/ special needs, and the sib had a lot dumped on them suddenly, with no information and no support. Meyer says that there are a lot of adult sibs who suddenly find themselves on a learning curve about a disability, trying to play catch-up about medicaid, the disability itself, housing, services, etc etc etc, with literally no background, no clue as to the financial plans for their sib, no nothing.

According to Don Meyer and research on siblings, there are seven things we as parents and service providers need to provide to siblings of achild w/ special needs(from my notes):



3) BEST POSSIBLE COMMUNICATION WITH SIBLINGS. Meyer recommended taking an active listening course or to read the book "How to talk so your kids will listen and listen so your kids will talk" and he mentioned that there is now a version of this book out about communication w/ your teens.

4) CARVE TIME ONE ON ONE WITH YOUR TYPICALLY DEVELOPING CHILDREN. Meyer mentioned one mom who occasionally pulls sibs from school for anafternoon of walking around the lake, or having lunch together. He sayswe may have to become really creative, but we need to do this.




Check out the comprehensive Sibling Support Network web site, especially the "publications" link. One important link is "What Siblings Would Like Parents and Service Providers to Know". Also at the web site are links to find a SibShop near you and links to internet chat groups for sibs of different ages.

The folks who put together Relatively Speaking always bring actress Geri Jewell to speak to the parents. Jewell is an actress and I remember her as Blair's cousin Geri on the tv sitcom, "The Facts of Life". She's quite entertaining and funny, and she can be dead serious, too. She has the perspective of being THE person w/ the disability. (She has CP.) Jewell's presentation, for me, was eye opening. She talks about her experience growing up at school and at home, and she talks about the "industry" of show biz, and barriers that existed and came down there. The biggest idea I took away from Jewell's presentations is the importance of making sure the child with illness or disability has a role and responsibilities in the home. Make sure the child is an active participant. Contribution to the family responsibilites carries with it a lot of non-verbal meaning of value and with that, self esteem. We need to make sure *all* of our kids are active participants at home (and advocate for them in the community as well).

During one of the parent sessions at the Relatively Speaking conference four years ago, someone raised a question about an "angry" sib. I was sitting next to a family of a child diagnosed with diabetes. There were families dealing with physical disabilities (CP, for example), illness, autism, Down Syndrome etc etc etc. And the heads began nodding all over the room. If a family had at least two sibs, seems that one of the sibs took on the role of "good kid" and another took on the role of "angry kid". There was a huge sigh of relief in the room as we learned that we were not alone, and in fact, it seemed, anecdotally, quite common.

I have more notes to share:

I listened to a presentation on CD from the ASA national conference in Seattle a couple of years ago, from two women who researched sibling issues. Mary Jane Weiss and Lynn Stern Feiges said that they found that in most cases, there are a lot of misconceptions about autism, for example, siblings don't understand what autism IS combined with the misconception from the parents believe (mistakenly) that the sibs DO understand what autism is. Weiss and Feiges have written a book, Sibling Stories: Reflections on Life with a Brother or Sister on the Autism Spectrum, with excepts available here.

Sometimes, sibs have worries not articulated aloud. For example, some believe they might be able to catch the disability or disease, too. Or they think they might have to care for the sibling when the parents are too old to take care of them.

At Autism One several years ago, I attended a roundtable panel discussion regarding sibling issues, with a mom (Emily Iland) of adult and teen children, and with adult sibs (one, Anissa Ryland from Thoughtful House in Austin, is also a mom of an NT child and an ASD child). The sibs expressed a variety of emotions and memories, and talked about things their parents did right, and things the parents did wrong, and things they didn't understand fully until they were older. Life with a sib with a disability often seems UNFAIR to the sib, when the child with the "issues" gets more attention and "benefits" from Mom and Dad.

The theme from all of them is the same. They suggested making sure to have one-on-one time with the NT sibs, to work to develop and grow a talent (like acting/drama, for one on the panel) or hobby, and to make sure the sibs understand what the disability IS. And find someone who can be a caregiver to the child with special needs so you can have alone time with the other sibs. That seemed to be a big one from the sibs themselves...no one could take care of the child with special needs but MOM or MOM & DAD, and that meant they missed out on activities or sporting events that the sibs participated in.

Here are a bunch of books and articles about siblings:

"Siblings, You're Stuck with Each Other, so Stick Together"

My Brother Charlie

Rules by Cynthia Lord (fiction)

Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs by Kate Strohm

Dan Coulter article, "Giving Siblings Their Due"

Dan Coulter article, "Brothers and Sisters and Asperger Syndrome"

"Where is the Compassion?" by sibling Kate Matlen

Autism Through A Sister's Eyes by Emily Hecht

"The Sibling Slam Book"

"Views From Our Shoes"

"Uncommon Fathers"

"Thicker Than Water: Essays by Adult Siblings of People with Disabilities"

"Living With a Brother or Sister With Special Needs"

"Jessica's Little Sister" by Debi Tyree Haney is a picture/story book for children about introducing a sib w/ autism to folks at Sunday School

Siblings of Children With Autism by Sandra Harris

Time Magazine article, "The Sibling Problem"





Even still more resources are available at the Sibling Support Project Store

A list of sibling/parenting related books here

I hope this is helpful.

For information about Relatively Speaking, call 1 800 359 3722

1 comment:

Tim Tinkel said...

Thanks for this post Penny. I've only read through a couple of the articles, but, already, it has made me think about what to do to help not only Joshua (my aspy), but his older brother John Allen as well.


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