ROUGH EDITED COPY
CONSUMER: CASEY JUDD
EDHI
SIBSHOPS = PROVIDING SUPPORT AND SAFE EXPRESSION FOR SIBLINGS(4:15 PM – 4:45 PM, TIKI PAVILION)
MARCH 15, 2015
CART CAPTIONINGPROVIDED BY: SHERRIN PATTI
ALTERNATIVE COMMUNICATION SERVICES, LLC
PO BOX 278
LOMBARD, IL 60148
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This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings
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Please stand by.
> He was the only child in our town with a hearing loss. So I wanted her to be able to connect and I couldn't do that for her so I thought the next best thing is to bring her and have her she was at that time she was in college, let her be a Sibshop facilitator and she'll get that help and be able to give it to the other kids.
So I went and found a Sibshop training and started Sibshop in my town just because of an EHDI session.
I want other parents to foe about it too. So that's why we're here today is so learn about Sibshop and talk this is my coworker Tonya Bowman and she has a son who attends Sibshop.
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> And here's our contact information. It's also on the PowerPoint that was passed out so anybody has any questions or at a later time please feel free to email me or Jenny about it. And this is the outline of what we'll discuss. Just kind of gives you a broad view of what Sibshops are and what they aren't. Who attends them and what it mean to the siblings. It's just a broad view of what we'll now talk about what a typical Sibshop looks like. Sibshops are for brothers and sisters for kids who have siblings with chronic needs. So these siblings interact with other siblings going through similar situations and it gives a model of what Sibshops are. When you have a Sibshop they're designed made up by the siblings who come so they kind of dictate how it's run. What activities they want to do. How much talking and interaction they want so they kind of lead the way of how they're developed.
The adults of course are facilitators but it's really the kids who dictate how this interaction will be.
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> These are some publications by Don Meyer and basically there are things in the book that you can just copy to hand out for the one on one peer support so I'm going to pass these around so everyone can see them. There's also the sibling slam book and a view from our shoes. One of the things that you kind of have to look for when you're holding a Sibshop is sometimes the sibling will have a disability. When they register they don't put it on there and sometimes you can pick up on that and these sibs need a good way to sometimes complain about their sibling that does have ADHD.
And there's nothing worse than having a sibling there that does have ADHD. And that's not the goal. They need a safe place to complain. So you have to make sure that you don't have a sibling attending that has a disability. As a mother I step out of the room when the activities start about what embarrasses you about your sibling. I step out. My daughter is the one that does that piece of it. You need for a facilitator, you need a sibling, no one can understand that but another sibling. You can be an agency and host that sibling. But they need to it's got to be sibling peer support. It just has to because I can't relate what it's like to have a sister or a brother with a disability. I know what it's like to have a kid but only my daughter can relate to that. This is my daughter, Sydney with her brother John at her wedding and we and the age group for Sibshops is 813.
Now you can continue. I have a lot of sibs in my Sibshop that are going to be turning 13 so we'll probably have a sib team Sibshop but those will also be peer to the younger ones and they will help me in that process.
These are the goals of the Sibshop. Ya'll can read them. We don't need to read them for you but we want opportunities for professionals and parents. We want these kids to know what their brother or sister is going through. How would you like to have a speech impediment one of the activities is we write a tongue twister on a piece of paper and put three marshmallows in their mouth and the one with the marshmallows says the saying and the other Sibshop attendee has to figure out what they're saying. And it's frustrating for the one with the marshmallows in their mouth because they can't make them understand and it kind of puts them in their sibling's shoes. Now you know why your brother or sister is so frustrated because they can't make you understand what they're saying. It's a little bit of that. My daughter does not like to do that. She says they don't want to learn about disabilities but I want them to so we kind of butt heads on that.
> This is my screw up there. That's Jeffrey, Jacob and Jasmine. My son Jeffrey can read this quote. We had Sibshops for a long time in Nashville. Currently we do not have Sibshops. But they meant a lot to Jeffrey to be able to have that time to express his feelings. To be with other peers who understood what he was saying and the lines of communication are open with me to share but to share with another sibling. I don't have a sibling with a disability so for him to be able to relate and have that, his open time was very important. Other families have called us saying they're looking for a Sibshop and unfortunately we haven't had one but it's meant a lot to him. I think he would be good once he reaches ages out to be a teen helper. He would help other siblings. So it really did mean a lot to him. And the relationship between a brother and a sister, that aspect, the closest relationship, usually the most longest lasting relationship beyond parents. Has a, you know, you get frustrated with your brother and sister but you love them to death and my kids do the same. They Jeffrey I know he gets frustrated with Jacob and Jasmine but he loves them and wants to do things with them at the same time. That relationship is crucial and having those things going on.
> Some of the things we cover in Sibshops is the guilt. They feel the sibling that doesn't have a disability feels guilty because they don't and they see the struggle that the other sibling goes through. Why did I get to hear and John didn't? You know? It they deal with that a lot and there's not any answers. Basically, the other sibs are like, yeah, I understand.
I feel guilty because I can run. Another thing we do is we don't do disability specific Sibshops. Because it helps, you know I mean, I've seen kids go, well, I'm so glad my brother can at least walk well one said I had to learn another language. It's kind of like, okay, well, I had to learn another language but my brother can he can walk. He can see. So they like to keep them nonspecific disabilities specific. So it's also, I've been to Sibshops that were like a deaf/blind family retreat and all those siblings come in and it's only held once a year. So that is a good way to do them. These concerns that we have, the embarrassment, no one can relate to what it's like to go out to eat with a screaming brother unless you've had a sister or brother that was screaming and so they get it. They understand it. Who can hold Sibshops? Anybody can hold them as long as you have a sibling. Agencies like to host them. We've had nurse I think there's nurses. Every kind of teachers, a lot of teachers, I just did it because I was a mom and I wanted them but without my daughter I couldn't have done it. Don Meyer has to okay it and you can get on the website. I think we have the information there.
And when I got back home and called he answered the phone when I called. And told me where the trainings were and hooked me up right away and then he told me when I went to be trained that I don't really like moms to do that. I don't want the kids to know you're a mom. Because I want them to be able to complain about something and they won't do it if they know you've got a son that has a disability. So we're from a little town, everybody knew I had son. So I just step out. I'm getting the next activity ready. I'm getting food ready. Or getting ready for the kids to cook the food. So I kind of step out and let my daughter do that piece. You need at least two people sometimes we needed three. I thought we typically have about eight kids in our Sibshop. Six to eight. You need at least two. I think you can get we did have three for awhile, but we have a lot of boys and they're really rambunctious and we had a guy that was helping. Three is okay but you don't want too many facilitators and not enough kids. How you become a Sibshop facilitator is you go through a training. It's a two day training. It's wonderful. They bring up every type of situation. They hold a Sibshop while you're there so you can see firsthand how it goes and there's his contact information. Anybody can sponsor one. In Tennessee we have ours sponsored by family voices. And Hands & Voices pays for the sibs that are deaf and hard of hearing.
I also promote it. I go out like I did a professional development in schools this year. The week before school started. When they had all the special ed teachers together. I met with them to tell them what it was. I also did it with the rotary club and they said, oh, well we want to give you 250 dollars and I was like, whoa, I wasn't even here to get the money but they wanted to help sponsor kids. Our costs are typically five dollars but we went up to seven. Now we're back down to five. It's not a moneymaker. You usually wind up losing money but most of the Sibshops I know charge around ten.
> Ten dollars. The one that my son attended at Vanderbilt they use students to also have adult brothers and sisters participate in that one and it was ten dollars. The hour was from 102 so about a four hour time span and it was ten dollars which was well worth it for that time period and we live right in Nashville but families outside of Nashville drove sometimes an hour just so their son or daughter could participate because it meant that much. They look forward to that activity and it was every other month. They built that participation. If it's in January we'll have it again in March so that was really important to have that anticipation. They made friends who they could see but it was very cost effective. Not a lot I'm sure they would even had scholarships for families who couldn't afford that ten dollars if they had more than one sibling because some families did and that was important to make it effective where everybody could participate. And this gives you a glance of what a typical Sibshop looks like. And, again, like I said they're made up, dictated by your group of siblings that come in. If they want to share initially then you have a craft that's of interest to everybody or game. So it's not a one size fits all. It depends on your Sibshop but it's a mix of activities, talking, interaction and fun. So that's just what a typical Sibshop would look like. Ours was every month but it depend on the level of interest. It can meet every month, every quarter. It's just how it dictates by the families and the siblings who attend so there's no wrong way to have it. It just depend on the structure of the siblings and the families that are participating. And that's it. If you have any questions
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> Yeah, you can divide them within age ranges because that's how my son's was done the younger kids had their separate activities and the older kids did too so it was grouped by age range.
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> It just depends. When I was at a center, at a university, there was one at a church. Just whatever facility gives you room to accommodate enough children where you can do activities where it's, you know, enough space if you want to be able to play outside, those types of things so a big enough facility to hold a maximum enough of people which can be any location. I think they usually kind of set the standard of having the same place because it's familiar and people know the information.
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> Usually things don't start coming up until they're around eight. That's when people notice the person who was with you who couldn't walk or whatever. That's when when they're younger than that they don't think anything about it. It's the kind of peer pressure. Plus we do some things where you have to write and typically if they're younger than that they can't. I mean they don't grasp it and it's different with girls and boys. Girls, they want to talk all day. You know in boys are like, when are we doing that so and so race. So girls, we did a slam book which was kind of a personal journey. The boys are like, they had that thing done in five minutes. You know? They had the same answer on every page. The girls are all, you know, they have these stories and so it's really different with boys and girls too.
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> I think it would depend on the facilitator. If it was in my town, I would hook you up with one of the siblings and then I might let you come for a little bit and kind of ease you into it. And if she's mentally mature enough, I'd probably let her in. Because I know girls are natural they take care of their siblings. They just do. I mean, the boys girls are natural nurturers so they are aware of things much quicker than boys. The cost is around 250 to 300 it depends. The one in Tennessee is going to try to get everybody in Tennessee so the more people they have come the lower the cost. He has a certain amount of fee to come to your town to train you.
So it kind of depends. I went to Arkansas because that was the closest one and they didn't have that many people attending but if you lived in a metropolis area it would be even less and usually you can get the agency that is going to host it. They'll pay for it. If you'll go to WWW.siblingsupport.ORG it will list all the active Sibshops in the United States. WWw.siblingsupport.ORG.
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> It's just decided between the individual facilitator. However you decide it works for you.
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> Every other month and then we're out for the summer. But every month I have kids. Now you want them to anticipate. When is Sibshop going to be? They're dying and so we hold them like the first, like the first Saturday and we do ours on Saturday night. You can do them in the morning. You can do them on the weekday but we just do ours Saturday so we do it like February first, skip a month. The next month we start in August when school starts so we just do them every other month and we don't have them in the summer. Some places have Sibshop camps. Several days long. But we don't. He has them in several countries so if you can afford to get them there. My thing is get as many people to do it as possible because that will drive the cost down.
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> They did it it was about four hours and this was during a family weekend and they have the same one every time and the same kids only see each other at that Sibshop and once you start doing Sibshops the kids walk in going are we going to do so and so? It gets so easy to plan because they know what they want to do.
Because they love the games. It's very fast paced. Well we thank you all for coming.
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