Home>Latest Shows>>United Cerebral Palsy 8.24.14

United Cerebral Palsy 8.24.14

Aug 19, 2014|

An interview with Susan Cushman, Family Support Director, and Kerry Pinney, Development Coordinator, about services provided by UCP and about their fundraising walk and how to get involved.

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Automatically Generated Transcript (may not be 100% accurate)

You're listening to mirror telescope the series of interviews with people of interest in northwest Oregon and southwest Washington. My name's Gary Watson and today on microscope I'd like to welcome guests Susan Cushman Susan is the united cerebral palsy can only support director and Terry Kinney. Kerry is the development coordinator with -- CP -- he's welcome to the show -- into evidence -- so let -- let's get started letting everybody know what UCP is. Well UCP is united cerebral palsy and it was found in the fifties by parents of children mistreat a policy at a national level and starting here in Oregon in 1955. So at that time that parents wanted something to do with their children who were adults with disabilities who weren't in an institution so we started doing sheltered workshops in group homes. And it was a great alternative to the institution -- time which is -- you. And then as years have progressed in the eighties we said he now if I was disabled I would -- -- group home. So let's have individuals being able to have their own homes so we support people in their own homes it's cults are supported living program. And then we decided that people deserve to be part of the community so we started supported employment. And we help people find jobs in real jobs in the community was real -- And over the years some other services have evolved and day programs for people who don't wanna work at least people have a choice and that's what's important is having a choice in the in the past people didn't have a choice. -- know when I was growing up I didn't see people with disabilities people -- didn't get the right to an education to 1973. And so. We just tried it and have people be part of the community and in the eighties. People with families for college since they will have a challenge to disability what can you do we didn't have any services for children so far by that and ended the 1980s we started family support. And I -- I'm currently working in the family support department. And we support over 750 families throughout Oregon and southwest Washington. Who have a child with cerebral palsy or disabilities it looks like cerebral policy does a lot of genetic anomalies that don't fit in any of the category we say come on over because they look it looks like CP. And would provide as many services is we can -- you know helping people connect with other feelings is really important. I know when my daughter was diagnosed. I didn't even know it's through group policy was. And I was completely. Overwhelmed and I -- I was able to call you CP family support and talked to the director who has always been up mom with a child with this with cerebral palsy. Who reassured me that life would get easier and that there were services and resource is available -- she would help me find them and so any time had a question that's who I would call. And that's what I do for families today my favorite part of the job is talking to a new parent. Most parents don't call right away it takes awhile for them to be able to reach out but one time I had -- and a father stopped by the day his daughter was diagnosed. That's pretty amazing. And like I said I didn't know what through a policy was. It's a brain injury. My daughter was born not breathing. So she a part of her brain was. So most people was through policy don't have any cognitive issues they're they're all bright and shiny in their minds work just fine. But their bodies don't always cooperate so what I learned is all of arm muscles move. At the behest of her trainer -- tells our muscles what to do and so with my daughter it's like it's like a telephone that gets dropped the tone for hockey has struck out. And so she can lose your balance or different things but there's different kinds of cerebral policy as well so is not a genetic disorder ignited outside genetic disorder is not a medical condition. There it's an -- it's a medical conditions not a disease that's what I that's what people think it's a disease like cystic fibrosis. Which can be progressives have server policies not progressive it's a brain -- It's like if -- -- I weren't a car accident we had a traumatic brain injury. When a child is under the age of three or four of the brain still developing and so that its culture for policy. So it is have been diagnosed and he generally million young age yes OK yeah I've heard of it being his latest ten but most of my daughter was diagnosed four months I know a lot of most people -- diagnosed in the first year. They do a lot more genetic testing nowadays is so that it can take a little longer to get a final diagnosis. And sometimes it's so mild they don't know -- CP that's the the ten year old he just had a very mild. Something else I learned. Babies can have strokes in mute hero. Which I I saw how in the heck can they figure that out but they do. And that's a type a -- a policy called him meets lesion infects one side of the body but most kids -- have any leisure adults. Talk and walk sometimes they have lack of balance. But they're pretty able to function in the world pretty easily. And you have used your experience raising a daughter was -- policy to help you be you do your work is that correct. Oh yes yeah I feel like they've been made for this job and reiterate my daughter's 22 now so. I've gone through the beginning and where was completely overwhelming and traumatic and I didn't know where to go. And being told I was here the expert on her in a cycle I can't be the expert I don't know what I am doing. And getting a lot of -- going to a letter workshops and training and learning about I eat peas and therapies said oh my goodness I became a speech therapist when she was a little girl. Not technically than. It's -- I just recently. I don't know sincerity Kelly right. Yeah yeah and so I have all that X -- -- I've learned -- resource is -- out and I've been doing the job now for eight years and I'm always learning new resources is ensuring that with the families. So you CP without being a good place forum. A parent to call the very first phone -- they should make this to UC PI. I think so -- and I can you know even if their child has a different disability. I can help refer them where they need to go but getting support. And finding information about the disability. Finding what services are available but also finding other parents who have we're dealing with the same issues. Is invaluable that's where we learn the most straight we have a peer group. That started when my daughter was six. And we can talk about seizures -- talk about constipation and there's all these issues that happened with kids with cerebral palsy and other disabilities that. You don't always get clear information from the doctors doctors -- can be great but sometimes they tell you things that don't work for your kids. They sometimes think they need to tell parents what your kidney never do this that the other thing when affecting me. So you have to -- -- -- -- the parents is really invaluable and I can and I hope people up with other parents to support group of people who can speak your language yeah exactly you'll understand we've had people come in and just cried with relief that there around a group. Who they don't have to pretend -- it's different than being around their friends who don't really understand. And I understand that too because -- night before and my daughter I helped birth the baby of my best friend. And he was later diagnosed with autism and so when he was about to. And is smudges I was supportive I had no idea what she was going through and I thought it was great you know a -- because they didn't have that experience so. It's really invaluable -- and other parents who have that experience. What are the services does UCP offer. For families. We offer support groups we have. Grant program that's provided through dizzy touch -- through the -- community foundation. And that's for grants for school aged children to get I equipment and help them in their education. Used to fund a lot of laptops known -- a lot -- pants. Because you can not only -- on your iPad but she can even get these apps that speak a lot of children mr. Posey have difficulty communicating. And they have this app called pro -- ago which is like it's like your voice so I cancer really you know pretty phenomenal. And that's the grant program that we do -- newsletter so you know I keep collecting this information funding sources who where to go for this and that. And so -- -- newsletter we put our conference every the year packets coming up in October here in Portland. October 24 and 25 he'll be two days of speakers and workshops. To get you know I went as soon as it started when my daughter was four to select soak in all the information meet other parents. It's the first time I met another parent had a child with the same currency piece of my daughter has. We have the newly diagnosed packing so -- appearance first calls I send in the book children was through a policy. And a lot of resource information and some feel good articles to. There's an article welcome to Holland that a lot of parents can relate to. -- How do you think this had a family support yeah I think on Saturday with a hundred people it was one I want everybody had a great time. Clusters barbecue catered didn't everybody loved it and we play games and people just to connect with other families in need another big events coming up in the very near future and yes we did you go on the block Roland run. -- -- Where I get too ahead. Planet. Execute for the year it's a great event and this year we will be celebrating ten years since you're -- Roland rent. And this is the fundraising for UC scheme and be primary source of funding for the family support program so. What started out as. A family support fund raiser. Has nicely evolved into a UCP event for all of units -- a policy that's really great sermon moments funds do you raise for the with the cement well last year we're right around eighty. 208000. Tell me -- last year was 88 Fisher goal is a 100088000. So but but but but. -- -- tense and you also we were open wheel to get a thousand participants in a 100000 dollars and we and is the -- Roland run September 6. And we have a 2.5 mile walk along the east bank of the as when I had the press is -- -- comes back waterfront park and over the heartburn. And we also have a five K in an eight K Renton so those were added a few years ago to try to really. Include more of just the general community to come and participate. Lots of runners out there yeah we wanted to see -- efforts are those involved in opened up to you CP. So I think yes they've written down in the spring water corridor he had a -- in a case starts higher. Starting -- -- right around -- -- fifteen an -- river east per month and take off from there how do people who get registered doomed to participate in the Rwandan all so absolutely it's. We have a web -- it's good www. Lock roll and Brenda board. People sign up as an individual. Mostly. People farm teams that's what we encourage farm team. Reach out to your friends and family get them to join your team support your team a lot of the family is in family support -- Really. Take part in this event. And they form their teams they have a lot of fun little competition between und fifteen of the loser is on the -- is -- who can only offense and prizes for the top. And mountains like the largest team and that tough fundraisers and things like that the teams dress up and fund costumes and -- -- -- it's my own. They have -- should we have T shirt okay when -- when it started ten years ago each team is encouraged to have their own teacher and we kind of -- bought into it. All wearing the same teachers say he had 600 people or seven or people walking around the espy in the same color teacher it's pretty. Fantastic expert but there's always some teams that do their own T shirts I've seen some really great ones that are coming this year like -- -- And you know that -- what's interesting I learned years ago this started ten years ago to fund family support because damage -- was originally funded by the united way. When it first started. For the first ten or fifteen years. But they united -- of what we wanna find new programs not ongoing programs are like new what are we gonna do. And then we started the walk Roland run in now it does fully fund families -- which is great. But what's interesting is that it's mostly families who have children -- through policy making teens. More and more adults with disabilities are forming teams some of our staff foreign teens. We have some of our our sponsors -- teens in the City University whenever board members as a teacher there's so she forms a team. But I heard that most events like this its corporate sponsors raised the most money but ours is -- teens have raised the most money because they're so dedicated. So we're hoping to have more teams than ever this year. And right now my daughter's team's number one should. So they aren't they yeah so -- character. Coming in the run walk roll and run is the September 6 September thanks so must be a Sunday or it's a Saturday Saturday to Saturday after Labor Day and so it's -- role in a letter and run dot org -- correct -- -- it's a great day we. Provide Papa Murphy's provides pizza. -- do -- to check out the sponsors have news we've got kids activities. -- is always there with their art -- paint telling them. Got service dogs can mean and we've got. Go probably. A horse or -- from really the miniature -- they went there is there last year he's pregnant well she's she's okay. She was pregnant and sometimes -- So I'm not demented spirit. Yeah and the horrors against one of the -- And other kids activities it's just it's fun morning -- great way to spend your morning and them. -- degree community. It's really inspiring it's really a funny that everybody who comes capsule has a great time. And we need volunteers so if you would like to volunteer we can -- -- there's this as a place to sign up on the website. To volunteer we need about. Eating your ninety's volunteers. And what is of the walk Roland run web -- word yes OK yes the -- run website to sign up there leaning group Ralph monitors skinny people. Any amp T shirts. Took the registration parking parking. All sorts of areas. Crews will be joining us that morning -- -- from our station one open on the bones in the I think -- Joey will stop by and and the rose city rollers are part of it as well -- -- -- are every year the last. 33 years they've come out and they have their -- -- and they start off a lot grow and they roll along the route ten. Mingle crowd literally living rates for his cheerleaders they're great the system greatly these yes they are indeed. Definitely community. And -- think the -- the band. Maybe maybe we've often had so would junior -- the band which is great in his they're able to make -- they'll come. And this is the largest fund raiser for UCP for the years that yes this is the fundraiser for easy. Called the friends breakfast in the spring. And that. Traditionally used passed close fundraisers but about three years ago we switched gears to. Calling -- a friend raiser and am just really using an opportunity. Two. And invite community members invite potential partner is prospects. That might wanna learn more about ECP in the work we deal and get involved with us in some -- so they get to come to this breakfast at the multnomah athletic club. And who listened to use speakers and listened to presentations on higher programs and really get inspired what it's a really nice morning end. To see in the outcome and hearing feedback for him and guests of you know it's so nice to. Just come to a breakfast sit back listen and not be expected to do something at the end of it. Are innocent young ranked -- Wright but days later can get involved how they would like to Clinton ECP and maybe -- -- become a downer but. More importantly maybe they know someone that wants to hire someone with a disability and they get connected to our employment. There's other ways and to sport ECP -- an hour block Roland -- which is their big. Fundraiser but we've been selected as a charity partner with the organ public house which is the first of its kind nonprofit -- Where they donate all their pro profits to charities. And this year they've decided to go with six charities at a time and for like three months. And it's so -- -- when you going into the pad you get to use select one of their charities from the board that you want your profits to get to. And UCP is a charity for the months of July August and September so we've got. The last part of artist and all of September ahead on -- to the expert in public house and do a great meal and a drink and support easy -- Dozens -- so much information to learn. There is there's a lot that you see. Its interest in. To see the reactions from folks it is -- we do more than just service people a circle policy maker in and says you know it's any type of disability. Most of her adult programs actually. The majority of the folks in our adult programs have other disabilities so many. -- we we limited their fans' support just through policy because there's no. Funding we don't get paid by the state to support families so it's all private donations in this event. Which reminds me one of the most important service is Stanley support provides -- provided from the very beginning has called respite reality. Which is combining respite in hospitality. And to program where we get -- hotel rooms donated to us to give -- parents OK it's awesome I remember when my daughter was very little. And I got to go away to a hotel for a night with my husband ending get a break for a whole night which was huge and might unlikely my -- six of the night but so many of our children with cerebral policy that's more severe don't ever sleeps is a night. If you can imagine never sleeping through the night for ten years in around the mountain oh my gosh. So a lot of her parents don't can't get away analysts we provide them with this room and we have sense a small amount of funding for the child care for the night. So that is -- and that's what our most popular program of course you know. And a sever years and arrest tell acorn energy and realize some -- can't get away overnight so she started date night. Which is where we get gift cards to Portland center stage or. Oh speedy factory your other restaurants is they give us gift cards that we can give to the parents and say here we go out for a couple of hours at least and renew your mission -- screening your you know your relationship been strengthened it. Single back and keep doing it doing what you're doing it's it's interesting we have thank you letters and sometimes the kids who say. I really like my parents being gone for tonight you know like you didn't know it's really doesn't -- -- you there great until. Hug because it's just overwhelming if you have a child that never is gonna get out of diapers can't communicate. Can't verbally communicate its its day in and day out tennis stress that's been linked to being. PT SD is you know army veteran so. We do we can train provide breaks. That's really a fantastic feature yes it's really been really great. So and then to -- remind me -- that visit friends breakfast one of our hotel partners came and got to hear of family talk about the importance of that night. And what the dad said was getting away from one night for us is like three nights for a typical parents -- -- and the hotels I was so glad to hear all that. Now what do they say -- thing again it must be just fantastic to be able to get away yes. And refresh refresh rate and get -- to it with fresh eyes and patients. So Susan how are you able to turn around to what maybe you saw as a tragedy in the very beginning into something that this turned into a very positive and your life's work. Hope I -- did a ritual when marine was too I was actually going through therapy and because I was I was just overwhelmed all the time. And someone suggested that I do agree ritual and being. The next religious person I guidelines like rituals so anyway. I did a ritual where because what I did one with Marie Marie was two years old at this time. I kept looking better and looking at the developmental charts and saying she's not tunis and she's not doing that when she gonna do this and when she going to be able to talk and and it was like I couldn't see her for who she was because they kept seeing the child to a thought I thought I was gonna get -- So I did this ritual where it created a baby doll out of paper construction paper. And -- all these magazine pictures of really pretty seeing things that I thought she would never do like right by ache. And do ballet York. You know other things I thought ocean of religion that. So I covered this baby doll with all these pictures stuffed it with more pictures. And I invited friends over and we all talked about lost and who all have things that didn't quite go the way you want them to go. And you know it's important to let that go so we can be present with our lives in the people on our lives. So then I burned to the baby in the fireplace and it was not because 3-D so look like a baby and it was it was so powerful litigious like. Okay you know this is what I wanted but this is not what I got so I'm gonna let you go. So I can look at my daughter with fresh eyes and it was it was so powerful the next day you're really felt like it worked you know you know sometimes you do things and he may make. Rooms would you come from New Year's Eve resolutions and they don't always work and change with the times. Think -- just shift in the blink of an -- and I was able to throw away the charts and look at my daughter and say okay this is your life. I'm your mother how can -- be the best mom I can be for you -- preview in the -- you need to be supported. Not like any other kid. And in fact what I learned is there -- 02 kids is through policy and just alike there's similarities but. You can't predict what any kid's gonna be able to do and so don't listen any doctors -- tell -- what they can and cannot do just keep going and trained the best -- with everything. So arm being -- to go that was the beginning of not seeing it as this horrible saying. And over the years meeting adults with a list with disabilities and becoming friends with people with disabilities. And just learning -- learning that mean before -- -- I saw some and we are cherry as -- that they didn't have they weren't Smart. Right and that's not true that's not true at all. And just because someone can't communicate does that mean they don't understand everything that if you're hearing that's what I learned I learned about when she was like this you know I had become a speech therapists -- learned that receptive language and and then with the other outgoing woman over the outgoing -- but receptive she was good with -- she knew everything that was coming in she just couldn't verbalize it right away. -- -- that I could understand she was making noise so. I learned for instance you have to closure now to make an am well I never new event. Who have -- to think about that and not think about that. So over the years. I've learned that you know it's just a difference. I'm -- -- a woman who wrote a book disability is natural she is a wonderful website disabilities natural dot com. And she talks about their always been people with disabilities and there always will be it's not an anomaly it's just a difference. And looking at like that. -- been really helpful and then when Marie my daughter before I had the job Marie was at one of the Stanley conferences on the teen panel and she was asked if you could wake up tomorrow without -- policy would you went there are three kids on the panel and they all -- thought about it. And she was only eleven -- and quarantine -- and she just had known. I would want to change anything this is who I AM this is only know. And that was eye opening for me this -- -- right this is your life how can I support you in your life. And how can I look at everybody has a difference and I and I think equivalent to that actually -- -- so well. Instead of judging differences 'cause. It's easy to judge differences we just are comfortable with their own people. -- -- and there was a mom in our peer group for years ago who said you know back when we -- in the cave days. Other people with differences were dangerous. And there's a part of our lizard brains it's still sees differences as. Not quite comfortable. And that helped me go okay that's what it is about it -- when I look at someone is different. Help me see what can I learned from this person rather then maybe don't have an annoying you do with them you know so. There and reopening this hints. And -- well the last couple minutes we have here let's remind everybody in about the walk Roland run yes we hope everybody comes out and joins us and -- -- -- say. You there register is for that -- their brand joins a team or just donates to a team. So we could use all the sport to help us reach our goal of a 100000 for -- -- and the -- again -- walk roll the letter and Brenda board. Fantastic in the September 6 -- number six well Susan Cushman and carry Kenny thank you so much from elementary school I think people connect. Metals gold was an Entercom communications public affairs program. My name's Gary and if you have a nonprofit or public affairs organization that you'd like let others know about you can email me at microscope @entercom.com. Remember -- com starts for the need. Or you can go directly to the station's website click on the community linked in some major information there. Also we like you this program again you can visit our podcast page at microscope PDX dot com. Thanks for listening to microscope and enjoy your weekend.