What are SibShops?

Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. They reflect a belief that brothers and sisters have much to offer one another — if they are given a chance. Sibshops are a spirited mix of new games (designed to be unique, off-beat, and appealing to a wide ability range), new friends, and discussion activities.

The Sibshop curriculum is used throughout the United States, Canada, England, Ireland, Iceland, Japan, New Zealand, Guatemala, Turkey, and Argentina.

The Arc of King County in Seattle produced an excellent video about sibling issues and Sibshops.  It’s almost 15 minutes long, but provides great insights from sibs of different ages and cultural backgrounds.  So grab a cup of coffee, sit back, and check it out!

If you are interested in locating a SibShop near you, go to http://www.siblingsupport.org/sibshops/find-a-sibshop.

Teen and adult siblings can connect with other siblings through FaceBook and Yahoo.  Go to http://www.siblingsupport.org/connect/sibteen-facebook-group-and-yahoogroup to find out how.

Happy 17th Birthday Ryan!

*Article appeared in our November 2010 newsletter.

By: Tom and Susan Bear

Over the weekend, our middle son – Tyler was given a school Health assignment of bringing home a computerized baby and caring for this mechanical baby’s need.  Latrisha, as he named her, provided a pretty regular schedule for our son, Tyler. In fact, he got the computer program routine down so well that by supper on Sunday night, as Tyler grabbed his “baby for the weekend? to feed her, he stated, “This will take exactly six minutes.”

This same weekend, we celebrated Ryan’s seventeenth birthday. With LaTrisha in our house and the celebration of Ryan’s life happening at the same time, Susan and I couldn’t help but reflect on each of our kids’ early years.

So at supper, with our now “expert father? son, Tyler, feeding his “baby”, Lauren, our youngest child, asked how long it took us to feed them as babies. Without hesitation, Susan and I focused our response on Ryan and said, “It took us at least one to two hours to feed Ryan as a baby and then we held our breath and prayed that some of what he digested stayed in and didn’t end up as projectile across our family room carpet.”

Both kids were surprised but interested. We explained that Ryan had a cleft palate as a baby and reflux. This double whammy meant Ryan simply didn’t have interest in eating. As new parents, we worked around the clock to mix, measure, feed, clean-up, and then wait a couple of hours to repeat. The realty of what we as parents faced with Ryan’s early care began to have impact on both Tyler and Lauren.

We have been fortunate as parents that Tyler and Lauren have grown up with great empathy toward Ryan. They are caring siblings and are physically distressed when Ryan faces any illness. But this weekend, the reality of what it means to actually care for Ryan seemed to seep into both of their lives. All because of a mechanical–computerized baby?

For seventeen years, Ryan has had impact on the lives of others. As we all watch our special needs children, I’m confident we can all say the same thing. These kids are magical. But at the same time, they are a significant responsibility. They drain our minds and energy. As parents, we get few breaks. But this weekend, we (Susan and I) got something a little different. We got understanding from our two other kids. Thanks LaTrisha and Happy Birthday Ryan.

Devoted Siblings Are Honored

Carol wrote into Kathie Lee and Hoda on the Today Show to honor her two children, Alex and Rebecca, who have spent most of their lives supporting their brother, David, who has Wolf-Hirschhorn Syndrome. Broadway performer Capathia Jenkins performs a special song for the family.

Visit msnbc.com for breaking news, world news, and news about the economy

http://www.msnbc.msn.com/id/41162089/vp/32314961#32314961 

I am the mother of 3 terrific children.  My middle child, David, suffers from Wolf-Hirschhorn Syndrome.  He had so many complications at birth we were told that he would not see his fifth birthday.

 

While I was pregnant with him I had to stay on bed rest for two months missing his sister Rebecca’s 3rd birthday, first day of preschool and consequently many other occasions throughout her life due to his needs.

 

David was born weighing three pounds and had to stay in the hospital for six weeks.  His big blue eyes and blonde curly hair made him very magnetic and angelic looking.  He needed a feeding tube for eight years and had uncontrolled seizures.  He had a specialist for every part of his body.  We lived at the hospital, specialty clinics and doctor offices for years.

 

When David was four years old his little brother Alex was born.  They have become inseparable.  Alex who is physically bigger, helps him do everything. 

It’s been a very long road with many up and downs, but David has really enriched every aspect of our lives.  He has a great sense of humor and love for life.  David gets a lot of attention due to his infectious personality and friendly nature.  His siblings seem to always just be in the background… sacrificing, protecting, and loving him.

 

Alex and Rebecca are unsung heroes and I would be so grateful if they would be recognized for their unending dedication to their special brother. 

Sincerely,

Carol Gordon

Siblings – How are we affected?

 

 

 

 

 

 

 

 

 

 

 

The following was written by Maria Sjodin, an older sibling to Leah Sjodin (4p-).  Maria wrote the article for a Families Career Community Leaders of America in 2006.  Thanks you for sharing this with us.

I can say now that being a sibling of a child with 4p- hasn’t always been easy.  It has been a long 12 years.  But I wouldn’t trade my sister for anything in the world.  Siblings are the ones that can be forgotten in the back sometimes, or shipped off to a relative when the other sibling is in the hospital.

They are the bag holders and car door openers.  They are the other siblings’ savior in the times of medical ‘torture’.  We are affected by how our parents give care for the other sibling with 4p-.  My parents have always loved my sister first and not focused on the syndrome.  I believe that has given me a great life lesson.

That everyone, no matter what they look like, they deserve to be treated equal.  My parents also have always treated our family as ‘normal’.  That has taught me that there is no ‘normal’ in the world and that it does not really matter.

My parents have also told me straight out what could possibly go wrong with my sister, everything has been very honest.  That has helped me stay grounded and less selfish, because I know my sister sometimes has it worse than I do.  I believe that is the sibling wants to know, tell them everything and the truth.  Don’t sugar coat it.

You may think that it is too much information for a young child to know, but knowing is better than being lied to.  I have always wanted to know the truth no matter how harsh it may have been.  I knew what my sister’s medications were since she was born, and all of her doctors.  I have a little memory key to help me remember what they do.  I am very involved.  Another thing my parents have done is treat me different and they try to find special things to do with me alone.

That has helped me know that I am different than my sister and feel important.  The thing that I think is the key to being a parent of a kid with 4p- is to love them first and not worry about the syndrome (that doesn’t mean ignore it completely, just try not to make it a huge focus of the family life).  Us siblings are affected by the way you parent the child with 4p-, so watch what you do and leave a good impression.  Because, one day we may follow that.

Watch Maria’s interview during the 2006 National Conference as she discusses having Leah as a sister.

http://www.youtube.com/watch?v=vFKgzEiI7Mg&feature=related

My Sister Martha

Beck sistersHer name is Martha.

She’s my sister…

As a child, I knew I was a very important part of Martha’s life.  I was the only one she would go potty for.  I was the only one who could braid her hair, taker her into a store, and stop her tantrums.

Sometimes I mourn the loss of the ideal sister, but I remind myself other sisters fight, argue and even hate each other.  I have a much better relationship than that.

Yes, I did feel you put her needs second to Martha’s.  We couldn’t get baby-sitters for Martha.  We couldn’t go on family outings because of Martha’s behavior.  I was never consulted about how I felt about various forms of treatment for her or how they would affect me.  The pain I suffered “for Martha’s good” was unbelievable, when, for example, I was separated for her without visitation.

No, I didn’t resent Martha.  I didn’t resent baby-sitting for her.  I would cancel my plans if there was no baby-sitter for Martha.  I loved her.  I would do anything for her.  She taught me how to love without reservation; without expectation of returned love.  She taught me everyone has strengths and weaknesses.  Martha is no exception.  She taught me human value is not measured with I.Q. tests.


“An Open Letter to my Parents” by Maryjane Westra, Sibling Information Network Newsletter, vol. 8, 1, 1992, p. 4.

Dear Mom and Dad From Your Other Kid

 

 

 

 

 

 

Dear Mom and Dad,

I’m the “other” kid in the family… the one who doesn’t have a disability.  I see you looking worried sometimes and I get worried, too.  I thought if I wrote down what I worry about it might help me.  Here goes…

  1. I want you to live a long time.  I want you to be around to care for us.  The teacher said people need to exercise and eat right to stay healthy… so do that, okay?
  2. I wish you laughed more.
  3. I want to do stuff with you sometimes ALONE!  I get jealous of the time you spend with my sister/brother.  I don’t like feeling jealous.  My friends get jealous of their sisters and brothers, too.  I guess it’s normal, but it’s hard to talk about.
  4. When people ask me how I feel, I don’t just feel jealous.  I feel mad, guilty, happy, grateful, embarrassed, resentful and other things, too, like any other kid.
  5. Just hold me sometimes.  You’re so busy, I feel like you don’t have time for that kind of stuff.
  6. I don’t want to baby-sit my sister/brother so much.  It scares me to do your job.  It’s okay for me to help out.  I know other kids have to help their parents, too, just not all the time, okay?
  7. Sometimes I think it’s all my fault you’re so tired and down, like maybe I am supposed to cheer you up.
  8. Include me when decisions are made about vacations and other stuff.  I want to understand more about what goes on with the therapy stuff, too.  It helps me when you explain about the disability and include me in the plans you make.  They affect all of us.
  9. Treat yourself well.  I want you to show me how good life can be.  I get afraid about what it’s like to be grown-up when you seem so down all the time.
  10. I guess I’m trying to tell you I’m not a perfect kid either.  I that okay?

Love,

Your “other” kid

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