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United Cerebral Palsy 091116

Sep 8, 2016|

AN INTERVIEW WITH KERRY PINNY, DEVELOPMENT COORDINATOR FOR UCP AND SUSAN CUSHMAN, FAMILY SUPPORT DIRECTOR AT UCP, ABOUT THE WORK THEY DO HELPING PEOPLE WITH DISABILITIES AND ABOUT THEIR FUNDRAISING WALK ON SEPTEMBER 17.

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Automatically Generated Transcript (may not be 100% accurate)

This is metro scope and Entercom radio Portland public affairs program I'm Gary blocks of the mission statement of united cerebral palsy is to advance the independents productivity and full citizenship of people was cerebral palsy and other disabilities. They're doing great work here in Oregon and southwest Washington and today on the show I'd like to welcome Karrie penny she's the development coordinator with united cerebral palsy. And Susan Cushman Stanley support director also with the UC Pete welcome to microscopes think eleven us. So I able Dolan. And you know it's going to be kind of a busy time of year because your big blow walked Rolen runs on the way. Yes indeed this is the busy time yeah cook for less than three weeks I think. And get fired that's big fund raiser for use he beat big fundraiser misses the main foundry cerebral. Palsy and it started twelve years ago and it is. That was formed to raise the funds for the Pam export department could. Well and what was that they begin filming September 17 this time to register now time to register or downing African perfect. Susan look so it's started a little bit deeper here and talk about what his cerebral palsy a smear policy is a neurological condition it's not and. It's kind of medical sun health issue is set. Brain injury so for instance my daughter was born not breathing and part of her brain is damaged any effects muscle control. And it varies it's like saying someone has cancer like cool it could be in one finger can be in the whole body. And so there's different kinds of cerebral palsy depending on what part of the brain was damaged. And some I I know a lot of families who have kids that can't move any muscle voluntarily. And need to be sectioned and and do everything for them and then for instance my daughter she can walk she can talk he can't really understand it to you know or a little bit better. Com but she can't pick up liquid for instance so she uses this restaurant to drink so. It varies from kid to kid. Or adult. And it's one in a thousand births in this country who can so it's quite a few people then. That have it and some can walk some camps. Some most of them are not affected intellectually but some are. So I know when when my daughter was diagnosed I didn't know what it was. And I had a lot of ignorance about it discuss I wasn't familiar with it wasn't around me. And I thought people in wheelchairs all have intellectual disability and I learned that's not true. I've seen that kids who can't. Really move any muscles but their brain is working just fine they're just sort of stuck in a body that doesn't let the move seriously. Interesting is whether that is an interesting preconceived idea. Bright red hour came from but I what I grew up. Like graduate high school long time ago before kids were allowed to have an education if they had a disability that was until 75 or 76 that the loss said. Given disability get to have an education. So the team so barbaric and it wasn't that long ago it wasn't the logo and things really haven't changed all that much actually which is really sad so. That's why we're here trying talk about it and invite the public to learn a little bit more about it and join us for our event because the walk don't run is really fun it's as my daughter said in the video it's like a big party yeah. We had a couple llamas and you talk about that but we have a couple therapy llamas come and kids play with that they get their. Bases pain in and and we get to walk and roll around the aspirin and a so. The beautiful part of Portland it's great and we always have great weather in September so. Jinx us. So. Are we had a pretty good Summers I think it's gonna hold Greg Ebert fingers crossed. Susan tell us a little bit about what your life has been like raising your dog. We like first it felt so. Completely overwhelming and tragic like oh what OK so she has his diagnosis what does that mean when she waffled she talked. I had no idea what it meant and it meant a lot of appointments a lot of therapy. And slow you know when and when she was too I realized. I kept waiting for heard it meets charts the developmental charts. And she wasn't gonna be needing them and I just needed to throw them away and just. To help her be the best kid she could be and that's so but a lot of parents come to. It's like okay throw away the charts don't compare your kid anybody else just help them be. Have the best life taken Hannah. That's probably why you are now the penalties for director yeah if you've been through it you know yes you know what parents. Or what the how to help her antics but expectations we break. Ray and I never forgot how it felt when I got the diagnosis so I. Truly enjoyed talking with new families when they get the diagnosis and and I can empathize with them and I can tell them. What do what the director told me when I called the day after my daughter was diagnosed with you know. You'll get through this it's not as bad as it seems she'll learn the tools that you need to learn. And where to go and how to help your kids. But the Phillies were directors always been the mother the child was through a policy that yeah. Can you tell us about some of the services that you CP offers well when someone first calls. A lot of information referral like here's where you can go for therapy have you called early intervention yet how what about DD services so. Getting people kind of hooked in the services. More importantly than that. Almost to me he was connecting with other families so we have this very active. Supportive close FaceBook group. On you know for that mostly for this area but the whole state police support families throughout Oregon and Washington. And and then parents can share information they can say what my kids doing this danger can ever done us. And he share equipment there was cheering equipment some and just offered a walker yesterday that their kid had outgrown. And then you know you know alone because when I. Memory was diagnosed I didn't know anybody else who has cerebral palsy so. It was overwhelming in that sense of when I got to call the director and kind of well you have twins this true all the you know what I'm gone through. So when people call me they get connected with other families we have and then we have outings like for having a picnic on September 24. At Harper's playground during their community day. And blustery at a 10000 people come to our picnic and there they get to hang out with other scams affecting new family just are his VP this morning. She's so looking forward to meeting other families as her daughter's only two and she hasn't met any of the families. And the other one the other outings since become the most popular is roller skating we take over oaks park roller skating rink. Because our families can't take their kids to rook to. Roller skate in a wheelchair. Is not allowed. And so we pastor granite but we don't really wanna be segregated from the public in the community so. Public and talking to you right now I want you to come October 10 it's free for everybody would make it free. On Monday night October 10 from seven denying it's a private party for us and we want everyone to join us. Come and see how much fun you can hand out. And there were the rose CD roller derby girls come and push the wheel chairs around. Or we'll gather strollers and they are there's and they love it as much as every Sammy. There is not a happier place in Portland on the night we do it in April and October so the next ones October 10 also. Yeah that I would imagine that's part of the problem is inclusion in this is. I mean things are a little bit better accessibility wise but he not everywhere. And even though it's close to be it's not so. And people's homes are successful in all these new homes are never accessible so. It's hard for your kid to go visit another kid in school at at their school it's their home is an accessible so and there's a lot of issues around inclusion. And people staring in asking what's wrong with your kid when there's nothing wrong with my kitty just have a neurological condition that makes the move a little different. But my daughter likes all the same things every other kids her age watt light. The they were talking just before assert this interview about that question what's wrong with your kid how do you answer. I usually say nothing. That's supposed to say cancer. R&R us say you know she has cerebral palsy and I didn't know what that was when she was diagnosed so you mean out of her that. So I try to do you know education. And mention what it is and that you know she is great computers. She'll be too it backgammon and chess and but suns got a super math mind. And he. You know she loves horseback riding and she's guns snow skiing and kayaking which I have never done so she has a very full life. She just moves a little different. Yeah but also my mayor daughter she's an amazing young lady via secret super great. I'm let's talk about the walk Roland run a little bit and it's it's coming up September. September 17. That he wants all of you to come join us because it really is like Susan senate. Great day it's lots of fun. It's a great and opportunity to learn a little bit more about disabilities display come in and joining us and taking part. And be part of the community so there's a five K and an eight K Renton that goes out back this spring water corridor basic 2.5 mile lock roll back those out. The us on crossing over waterfront park and back. And Papa Murphy's graciously provides pizza and the olive garden those salad and bread sticks so nice to get to ET get to exercise you get to you. Have some fun lots of kids activities like Susan mentioned earlier the famous Rojo and his pal smokey the mom I'll be joining us again. It's a lot of fun it's a great opportunity to. Experience and support and we learn a lot to write absolutely. Learn a lot deserving from original moves and things like that the there are some of our sponsors have boos and some other community. Organizations have is. So we act via lots of fun you've you've got Cheryl and his stuff. Okay joining us this year so we're excited to have them emceed the event and. I'll tell Luka an awesome time how we register for the. Yes lock roll the letter and Rand dot org that's the website so you can go to the website registered China team or just support donate to. The team a person or just overall. Other lots of teams there are a lot of teens I think last year we uttered. Most yet and where on the way to break that I think we get like 53 teams last year well. Pretty share were all most of fifty right now with some room to. Had a few routines this is one of your biggest fund raisers who thought isn't easy these fundraiser immediately don't you other fundraisers so this is the time the smartest the my per gallon and September 17 there what do you do with the money that you do raise. Learn all for the family support that's what it. Keeps her family support department operating and all of those services that season. Can talk about Blake. Like it will the most popular service I didn't finish telling all the things we do can we have parents support groups we have training swear people can learn like we're having. That common do the training and I AP's so we could learn what your child's rights are at school. What they're entitled to. And then we put on a conference every the years our conference is coming up in October or welcome all kinds of professionals in fi only succumbing. Have two days of training and workshops and speakers. But our most popular programs were called rest totality where we combined respite with hospitality in hotels give us free rooms. To give the parents a break but a lot of our families have kids that never sleeps in the night. So usually mom never sleeps through the night. And I don't know if you either experienced that that I did for one week and it was horrible. So we give them one night a way out one of our day has wrote a thank you to the DoubleTree the DoubleTree is wonderful always gives this rooms. And he said getting away for us for one night is like two nights for typical parents her account because it's so each mile that. Get away and just focus on the relationship to keep their relationship strong it's really important. That the parents have time for each other and when they're raising a child with. Complex needs sometimes they can't and so we give them and then prepared to can't get away overnight we have date night so we are reliant restaurants and Portland center stage gives us free tickets and restaurants and then we parenting glass for an evening. That is really also it's really great says hell if if to a restaurant or room hotel listening right now how company make that donation you. Well called UCP's failings support on giving my phone numbers they given phone please do not final 3467. The 0332. And what's the website. Well are you seek you website is at community for every one dot or just easy to find Kinney hook under the law general through there. Yeah yeah I did yeah and I moderate and yet that's easier community for every one dot org the walk Roland run is a little harder to remember. Walk roll the letter and run that dork ha. Now that must be a really special night for the parents who do get a break what were the kids don't. Well they have this feeling has to find their own child care well we can give them some money towards that as part of whereas some of our money goes. Only pay but people use family and friends Susan are there any other services that you CP offers well when I did talk to a new family we. Send them a packet a newly diagnosed package and we do we get the book children with cerebral palsy. And we send that to them with a hold on to articles and suggestions. And ways to take care of themselves through this process. Take it easy. So in between says newly diagnosed packets to all new families. And we also administer disease Tosh fund which is out a grant program that was left by Sidney and millions he touch in the seventies. To the organ community foundation. And they administered to several different organizations that work with kids with disabilities in the focuses. Chill blowing come organ children who are in school who need equipment for their education. So when I first started the job ten years ago this finding a lot of computers desktop computers that I started spending more laptops now funding a lot of ipads. So kids who cannot writes my my daughter doesn't write with her hands she uses a computer since she was one year old. So I can find and I had that not only did they can use to write with but also as a communication device. It's their speech is hard to understand that's really great is really great so I have I have money infect as he touched when he will be coming in to UCP next month for the next year. So if you have a child who is a physical disability and needs some equipment for their education teacher and contact me. That must be such as strange and scary time. Took it in a parent's life when this this happens and they don't Wear you probably feel completely alone first of all right I'm the only person that this is happening to. And thank goodness you CP is there. Exactly and it is the Doctor Who diagnosed my daughter she's only four months old gave me the car can she was on our board. Thank goodness that there are other families who call me. When their kids are four or five or even ten they'd never heard of us. So if he if anybody out there knows anybody is raising a child with through the policy please make sure they know about us. Maybe these families and in doing it on their own for so great right Greg in and Ali remains when I ran past a Stanley just out and. The public general erratic custom when that doesn't know that child of the disability your circle palsy specifically and they don't know of accident Sally is you know and like and a union you know about it yeah for sure yeah and hopefully people listening in this is open. Yes yes I hope so that's aspiring hitter yeah. So what role and run is it is your biggest fund raiser and you were telling me something interesting about the money raised in the donations. Yes so we're always one thing we're always looking to do each year is increase our sponsorship. Money and for the event each year so we are always wanting more sponsors. Business community sponsors. Because our events unlike most events that I know Lance. We don't raise. You know half or the majority of our. Funds from sponsorship and it's actually the other way around it's our family is our participants that sign up indeed a fundraising. So most of our fans actually raised by a that fundraising have families are not sponsors so. We'd love to see that's what's your hand because that's where we're really gonna make a difference and really read. Some big goals is when we get the support from local businesses. Two. Happened to that sponsorship. Ya know for sure so what's your what's your monetary goal for this year we're at 85000. That is our goal this year nice so we hope to. Absolutely reach that. Yeah I mean those donations to start coming in consulate in late let's say get out the what city in the lock roll the letter and the Rand dashboard and the other something that's really special that just became about toss about fierce love like this this is amazing to me. Fierce love is play written by six moms of children with cerebral palsy. Well we work with well arts well arts is a local nonprofit that helps under quote under represented groups tell their story in in the form of life theater. So what happened was when. Dave provided a facilitator. And I gathered six moms including myself and we met for ten weeks. To write our stories now we had no idea when we start like okay we're gonna write down our lives wet. Well we've been living through raising your kids with CP but how I think that a trend in to a clay. And about half way through we started learning how to write dialogue which I found super challenging but. Other moms had easier time with that part of that and we all like the first session that we met we all talked about the diagnosis. Because I mean some kid like if you have a kid with Down syndrome you know right away bases are born. And and and Weller had done a play with the north was Down syndrome moms the year before and I go onto the plane ain't seen and I was just. Like wow there's disability and stage have never seen this before and one of the well I its board members disease CP grandmother and so she invited us to do it so a year later we. Did the writing group and then. We were there to help auditioning actors and then we were there for all the rehearsals any rehearsal. I'll look more stories were written we never stopped writing until the very end. And we put on five performances. A year and a half ago at the maligned group theatre the last four was sold out. And that there are actors actually had to hold Scripps for parts of the play because we changed the script to the very last minute her. Color constantly try to answer an any adding a lot of humor so there I mean there's some sadness and it there's some. Oh my gosh I can't believe someone said that to you or your Childs. In the from the audience. And there's a lot of well I didn't realize. What your life was like until I saw this play that was from family members who've been there for the whole journey. And even though they were close and they helped watcher kids they didn't know how really felt until they watched fierce love I mean I love the title because it's so true I. I mean I didn't. Marie is 91 an only child and I didn't know what kind of mother I would be but I'm of fierce you have to be a fierce mother in to raise a child you have to finalize. You have to fight for school you have to fight for them to just have basic rights. And you wanna do it in a loving way you don't alienate people but he have to be firm. So the play includes some online some scenes acted out. The funniest scene is where one month turns into the hole when a car drives client hunks Anderson cross in the street in his walker. So actually that's on YouTube we just uploaded just for individuals scenes from fierce love cool. And you can end and it but we recorded an idea and made sure I knew that north was down in your mom's hand recorded their place so I I we hired a video refer who. Videotape the two hour performance and resell the dvds also sold almost 200 government. We just got a new print seeing with cases and it's all very professional and wonderful. And it I you know. My worry my daughter's 24 now I felt one of the hats I wore when she was little like OK I have to be an occupational therapists have to be physical therapist. I have to be speech therapist I have to being an advocate and to be a lawyer. And I have to be a community educator I have to because I didn't know enough about. Anything about disability that's one of my job one of my hat is skinny educator. And fierce love isn't the best most powerful teaching tool that I seen in 24 years now. That's great death and we do find it on YouTube. You will we get cash you can thank scenes I need to scenes on notice head at what I get a few ten fierce sluggish able to find it. That's great and yet you did the dvds available for on our website at trinity for everyone got dark yet the only twelve dollars or two for twenty. Can you quickly explain to me or tell me how old what that was like for you was that kind of cathartic. I was very cathartic I mean actually what I ever I know the first few weeks so I wrote was just to paint the puck and then I got into writing about the joy and I mean I did agree if ritual in Murray was too because I kept focusing on she's supposed to be doing this she's not the daughter I thought I was gonna have why isn't she doing Matt. And I realized that if I did a ritual to let go of that. Picture in my head of the daughter that I could just let go of her and scenery for who she was it was very powerful so I wrote about that that's one of the scenes in the play. Where I the next day I woke up an instant pond and look at my daughter with wonder and on instead of fear into the fear for her future. And I realized in that process. Daughter reeks of spelling every day. And she's healthy she doesn't have health issues. And she had one seizure when she despite the that was later on and she has any sense so. I'm really lucky to have a happy China. Coming those 24 years you didn't have a lot of opportunity to stop and think about what was happening to you. Great race this is a great way for all of us take. Kind of mere each other go on you Philly Fed 20 you've had people say the same thing do you have asking you what's wrong with your kid like we all had that so we got a laugh a lot together. About how are similar our lives had been. And and ended though they were different as well I mean Hank I chose. Specifically mothers with different. Ages of kids and different severity of CP and in fact one mom joined us who had his stepson had died. Because that's part of our story in some of the kids if they can't move their muscles and they get pneumonia and they can't cough. They passed away and so her senate passed away a couple of years earlier and she was brave enough to come and share her story in the things she wishes. That she'd done differently. And though that's great hinted that wonderful. So in the last minute or so we have here let's recap the walk Roland run come join us September 17 block rolled a letter Renton. Dot org sign up support. And it's. Really it's gonna be a great day always is you leave very happy that you participated very happy that you connected. With individuals and our community it's like. Susan said and her daughter is a smiley happy. Girl and you want help but notice Maria at the event and this is everybody knows marry a so it yeah we really hope everyone comes out and joins us any other sponsors out there that wanna get involved absolutely reach out. Or this year for next year. Always want more businesses and more community organizations to join us in the months. There's lunch for something real to me we can count buyers can buyers are going to be handed out. Three jewels going to be joining us this year is selling their wonderful ice cream sandwiches also. Lots of opportunity to just enjoy yourself face pain team. Photo Booth. Lawman is kids' activities chapped children's healing art project we'll be their gain some kids act. Two cities so. And on the west side block world letter and run dot org is a new one minute video that just cuts need to promote the Walken Roland angers my daughter Santa Paula about life without limits so excellent celebrating life that limit this year. Walk roller and run dot org. Excellent we'll carry any development coordinator would you CD and Susan Cushman and we support director with you know the three proposing. Between himself and extra honestly I didn't. Microscope is an intercom reveal Portland public affairs program I'm Gary blocks of if you have a nonprofit or public affairs organization that you'd like to let others know about you can email me my email address is macro Scopes that inter com dot com. Remember intercom sort of an eat if you can always go to this station's website click on the community link and submit your information there.