Sib shops and Extraordinary Connections !!!!!!!

I'm posting this on Jeremy's blog because it does pertain to him, he's been my inspiration for the past 9 years on the reason I am involved in the Oklahoma Family Network and other projects I've been involved in.

Extraordinary Connections- Genetics have always interested me, we searched for many years to find out Jeremy has FG syndrome, then a "significant" change on his L1cam gene to find out I've got the same change on my L1cam gene. When I visit the Children's hospital I always ask them for any family that has been admitted that has a genetic syndrome, unknown genetic syndrome or anything metabolic. I love speaking to the families, I have learned of many syndromes that I had never heard of and I always will research them to find out information. We have so much in common even though we have different diagnoses. I called our Executive director and told her I have a passion to start a support group. I visited with another mother who was excited, we met for breakfast one Saturday morning and brainstormed. By Monday Extraordinary Connections was born with a logo that Melissa and David Ramirez came up with. Extraordinary Connections is for families of children with rare Genetic or Metabolic disorders. Extraordinary connections meetings are a safe environment for the parents of children with rare genetic or metabolic disorders to find support, resources and truly empathetic companionship. For purposes of this group, we defined "rare" as impacting five or fewer children with the state of Oklahoma or families without a diagnose for their child's condition. My purpose will be that this group will be to help the families find similar experiences. Our first meeting is,Saturday, September 20, Hardesty Regional Library, Maple room, from 10am to noon.

Sib shops- talking to families or visiting them in the hospital they would voice how hard it is for their other children who doesn't have special needs. Often times these children feel left out. If their sibling with special medical needs they are so demanding and require many appointments, hospitalizations. If their sibling has developmental or behavior, they are demanding and require therapy appointments or often times when they are in public the child will be embarrassed by their sibling's action or while they are at school they gets lots of questions about their siblings special needs. Jeremy has no siblings but I am totally emphatic with families who has a child with special needs and other children. Sib shops is a fun place where school age children who have siblings with special needs can interact with other children their age who have siblings with special needs, and get the emotional support and build relationships with their peers. I am going to be the coordinator of the project and worked with Juanita from Oklahoma City who has had successful sib shops for the past several years. Juanita did a planning meeting with me and 2 women who grew up with a sibling who had special needs and child life specialist from St. Francis Children's Hospital. We are going to have them at St. Francis Education Center, Classroom #2, starting October 4 for the 6-9 age group, Nov 1 is the 10-12 age group and they rotate each month and will go for 4 sessions. I'm also working on attending a 2 day Sib shop workshop in Salt Lake City, UT for November 13 and 14, so I can be better equipped to coordinate and make sure our Tulsa sib shop is a success.