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United Cerebral Palsy 082717

Aug 24, 2017|

AN INTERVIEW SUSAN CUSHMAN AND KERRY PINNEY WITH UNITED CEREBRAL PALSY ABOUT WHAT CP IS AND THEIR FUNDRAISING WALK, ROLL AND RUN ON SEPTEMBER 16.

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Automatically Generated Transcript (may not be 100% accurate)

This is a microscope and Entercom radio Portland's public affairs program and your blocks all. On the shows some I would like to welcome Susan Cushman Susan is the family support director with the united cerebral palsy can also carry period the development quarter coordinator with the UCP welcomed facilities thanks ravenous. Susan let's concern review. Could you define for us what cerebral palsy who's. Cerebral means the brain and policy means injuries so. It's pretty simple it's an injury to the brain. There's lots of causes. We have families who have kids with CP they don't know how it happened my daughter was born not breathing. So that's a pretty common cries go through proposing is a lack of oxygen. It happens when kids drown and there are revived. Or just quit breathing I know a couple kids who just quit breathing like almost just since they need but they came back. And then they have the brain injury which affects movement. And there's many different levels and severities of cerebral policy can be really mild can be in one foot or one lane. Or can affect every single muscle. Well is it's and you generally happens at birth for me or known mostly it happens of birds OK either pre. Labor during labor right after labor. But like he says sometimes. Massive seizures can cause brain injury. And drowning and an and I know couple kids who ran cracks in that when their babies and their head was hit and it caused. Through a policy well it you know where if the brain is developing this kind of is the benchmark and that. If Sarah under ten in the brain still developing and they get a brain injury. It's called cerebral policy if we did it and brain injuries called a brain injury okay. Discussing. Thanks for sharing in would you like to share your story about your daughter. Well my daughter was born not breathing after a very long labor. And revived right wing taken out of the room I didn't know for the first couple days if she was gonna liver or not it was pretty really traumatic and they. Came in and civil she might have cerebral policy and that was twining five years ago I didn't have any idea what it was it just sounded scary and I said no please. And then informants she was diagnosed and luckily firm need the Doctor Who diagnosed it was on the UCP board. And told me about family support so the next day when I can quit crying. I called and talked to the director who was also the mother of twins who both had through group policy there were twelve at the time. A caring now works for the state and her kids and there's thirties. And so then like I can ask questions and I could do you know kind of have my fears allayed and know that. I was gonna get through this by me being able to call her and talked to her this huge if I didn't have that I don't know what I would have done. What kind of life change was it for you wins who's diagnosed. The biggest. Then I mean if there was there's been nothing more word impacts on my life thing getting their diagnosis. Because they didn't know what it meant here she's only four months old is she gonna walk can she gonna talk. What do I have to learn to beer parent I mean it's daunting enough she is my first child my only child. And IE you know how scary it is bringing a new baby home for any parent. But to have this label put honor. And then that's how I suffer the first couple years with the label. And and then I did some grief work to let go of her meeting her to be. The kid I thought I was gonna have so I could just go OK why I have this kid was through opposing. And let me be the best mom she needs and I went to every advocacy training and educational thing I could find about. How to be the best advocate for her and then when she was fourteen I got this position supporting other families that you CP. That's couldn't quite a mine changes that for you. Yeah soon to think OK here's the daughter I expected to and here's the dollar ahead of great to football around. Yeah I was it was huge I actually wrote an article about it that exceptional parent magazine printed. Because it was such a profound experience really the next day I just threw way the developmental charts like okay. Kid you're gonna develop that your own pace I don't know it's gonna be but let me try this for you as best they can get Charles therapy I can. And and just lover as she is instead of wanting her to be different than who she wouldn't. He knew that visceral palsy or UCP is that it's called has been a lot of help for you before you were you on them a huge gaffe for both of us. And the appearance support group started when she was six and then she got to go to the child care and meet other kids to see because at her school. Just fully included and her elementary school. But she you know any other kids was your policy to the family support. Care groups started. And then she couldn't she's got friends that she made when she was six. Well that she still hands that's great news and she's doing wonderfully well she's going to treat and PCC. She's gonna she's got it going very degree as a peer educator she's about almost halfway there. She's an accomplished artist she's always selling urges Nancy site. And she's kind of fearless. And she's looking into moving into a co housing community. While the receipts ups yeah big big steps we weren't we never thought we were we never knew when she be ready to move out she sort of ready to move out but. These defined community that would give her just a little bit the support she needs she can walk and but she uses her power chair for long distances so hurt her CP is called at the toy it's kind of not the most common. Sex every muscle including a mouse she's still hard to understand it when she gets an hour you can. I understand your. And cerebral palsy is different almost in every person every person it's different there are kids who can't move any muscle. And had everything has been moved for them. And like I said then there's kids who have a stroke in utero. Which was just astounding me when I first heard that how do they know that that they can tell. And there are and they have one side is more affected than the other like an adult having a stroke. And your whole life and they usually can walk and talk and do really well in school. I mean it is CP doesn't necessarily affect the intellect just depends if it's such. He he really can't tell if the kick can't talking can't communicate you don't know what's going on in their brain necessarily. And so I give everybody the benefit of the doubt so that's some of what I've learned Ian Murray's mom is. About all kinds of disabilities and that people are people have value and worth. That I didn't even realize. Maybe you could serve the some misconceptions about CP. Com that is contagious it's not contagious it's not health issue she's very healthy my daughter most kids to see peer pretty healthy. It doesn't necessarily affect the in lacked. Yeah when I would go talk to Rees elementary school like mixture and Thomas not contagious. I tell you. It's do people approach your daughter thinking she's not only are yeah I think they do all the time in fact I wanna make. A laminated. Algebraic formula that she can. She can do advanced algebraic formulas that I couldn't even helper after seventh grade in math that's. And when we were at the beach and not too longer on this woman is talking they talked to her and I just was taking. This formula because she can't. Via. How do you explain that to people that that she isn't like well I just say you know what she's just as Smart as you and I. And just it's just her muscles move a little differently her speech is a little bit different than yours and little hard to understand but her and her in order to solve right there. And is that the work you do in the interview with support if you seeping some of that on extent created a grief power. Point that I have been taken around two team meetings of Kenny caseworkers all over the stayed about the grief process. Because it's so important to recognize that if a parent has a child with a disability they go through a process of grief that never ends. Doesn't mean every day's added means that when different kids are hitting different milestones in your kids on hitting them here's another level of grief. And to recognize that and that it's important. I think to do agree African feel the sadness so then you can be more present for your child is what is it which is what I experience. To me more about the the fan who support at UCP. So the first thing we do like I got called on Monday from a new mom hurt her daughter just got diagnosed she's too. They do a lot more genetic testing and that's another thing CP is not genetic. It's an injury. So I just. We've made sure she's hooked into early intervention and in their Channing caseworker you know issue hooked in all the resources that are available turner family. Is that he -- beginning therapy and then we send out a packet of new information so here's some articles that help. Taking care of his teeth as a great article about that because that's one of the issues you can have to deal with this take care of your kid's teeth. A lot longer than typical kids and then we have a wonderful program congress the tally where we give parents a free hotel room we work with. Hotels all over Oregon and topless Washington and give us free rooms. And we let the parents get a pray because a lot of families who have kids that are really severe they never sleeps is an Ernie. None of IUI I've been fortunate that I have been able to sleep the nights and she was seven months but. Not sleeping tonight takes a total so being able to get away even for one night is wonderful so. And there are some families who can't get away overnight so we work with local restaurants and partly center stage gives us free tickets. And then parents can get a date night and is so I mean I had parents tell me all the time lonely kids eight we've never gone and it dates since my kid was born. And just try now so inch and that many many families tell us without you we wouldn't get out. So supporting UCP and the only support supports families getting a break so they can. Maintain taking care of the kids 'cause if they can't take care of their kids they going to Foster care because everybody a lot of money. I was in the community and help out. Well we have our annual fundraisers the walks Roland run which is coming up in September 16. And that's our main fundraiser I mean even give me money any day of the year not by the vet the that is a really funny man with all kinds of 1 attack I am sure it is our thirteenth annual this year. And Saturday September 16 this year we have a five K ran and a two mile walk role. And for the first time we get T use the till it come across in print outs and out will ya fun. I'm in the runners are going to lead off the locker also everyone's starting at 1030 so it'll be this big group. And finishing at roughly the same time. It's just a wonderful community family event that really brings together folks and gives agreed idea of what the UCP community is and bears' food Papa Murphy's always provides pizza for attendees. We've got lots of kids activities face. I think gives. Kisses to anyone one team and pictures and photo Booth we have music and can stop comes and and sees the event fast mercy signed the person and that's great. And so it's it's a really really important fundraisers in the sense that it's the one and only thing you see. To get out there in the public and ask for support in that manner. So we really encourage everyone to join us whether they're forming nineteen joining us a team or just donating into the event. What's the best way to get involved but go to the website there are saying unlock roll the letter end run dot org and and can he can just donate. Rate Payer or he can sign up register. And and every little bit helps shrink every little bit helps absolutely. We have so many family is forming wonderful teams that they just reach out to their whole network of friends and family and aid. Really do a great job fundraising for this event. We have wonderful sponsors supporting the event and we really couldn't do it without just everyone pulling together and their resources and sneaking in a success. And and how many people do this year after year after year we averaged between like 650 to 800 attendees each year. That's great it is and families can Mac can do it that's just it's a fund fund family went to previous. So we'll Wal-Mart we want more families and folks to come and experience it and what do you do with the money that's raised. Well the money goes. To support family support fan support is the only department at UCP that does not charge for services we support families throughout organ in south as Washington. Our adult services. Serve. People with all disabilities not just cerebral policy including autism Down's syndrome ADHD. Mental health issues so and that we get country acted with the state to get. To pay for those services to pay the employees to support the people the adults a disability so we have a supported living program supported employment program. Where people get real jobs through our job coach's job specialist. And so I'm. And then we have that and a day program where people can get out of there. Situated their homes and getting to the community current community. So local businesses can help us some of variety of levels and there's the employment if you have. I mean people with disabilities if you look at the statistics are excellent employees. Yeah we should we you can learn more about that from our next show. But it's hotels and restaurants theater any place that apparently wanna go out for a date or an overnight. We'd love to hear from you to donate to that protect. In the program. Yeah minus envious sponsor of the electoral and where always wintry sponsors and those sponsors meet a lot. Joining us here to here and how can business do you how this forty and they can reach out to me by email or just. Through the website blocked Roland rent dot org. And they join us at various levels of sponsorship. That's Chris in the walk Roland run is again what state Saturday September 16. So it's not too late to sign up you got plenty of time funniest time to raise money I'm mostly money raising going so far. We're doing well we're spread about where we are each year it's funny a lot of the lot comes in and in those last two weeks which so you're always going to do where are we doing all right yeah I think we're almost got 40000 we hope to make 80000 this year so with all of your listeners out there is great nestled. As development coordinator carry this from your job to worry or. About Dennis the thing. I'm not sure about that beat that drum we get people raising money indeed. The thought Susan can you tell him some more about the other services that are provided by UCP's. Well I put out a newsletter every you see every three months but now whenever I have the mood in every. Month practically there with just articles and resources that are helpful for all the families. And support group. The parents for group once a month which is what I did you know really saved my life. And then outings so we takeover oaks park roller skating rink a couple times a year. Tom because people can't just bring their kids to oaks park or any roller skating rink in a wheelchair analysts. It's one wheelchair and it's not busy but they never can bring lockers are adaptive strollers. And so we have to rented out privately but we don't wanna be segregated so we invite the public to come join us. And in fact in April we had a 400 people while he and we usually have 20250. But I really put a push out and we got a huge group and what's extra special fund is the rose city roller derby team comes. And pushes wheelchairs and strollers around the rink. So it's just a funny man and everybody loves it so we do that a couple times a year we have a picnic in the summer. We coordinate with Harper's playgrounds community day that's coming up September 9. And I did put on a conference area of the year. Big two day conference with vendors and speakers in keynotes. But this year for the first time in my opponent one ending mini conference in Salem kind of reach more of the state and just one day just for parents and so anybody can support any of that work you know either as I did when Marie was little I needed a lot of information to. Help me navigate rule this world that has only company acronyms. Takes a leveling. Well you and your just beat you are probably a wealth of information because. You have such experience with us you're thrust into it at some point 25 years ago nearly four years ago any fan and it was. Out of the blue. It was daunting it was it felt like the biggest tragedy of my life. And turns out she's the greatest gift of my life I've learned so much being her parents so yes I am a wealth of information action. He could put them era that must be. Probably the scariest moment of your life yeah once. How did you get through. Well I cry. Then I called ECP the next day and I just every time I was felt overwhelming I can call. The film support correct and say OK what about this what about that. And then I connected kind of a mentor parent as a parent and child who was ten years older and I can call her. So one of the milk you know one of the most important things I do is connect parents with each other. By having the outings by having the parents support groups even though walk Roland run people meet each other and then they become support for each other. And before certain services that the state provides. When Murray was little there was no money for funding tit for respite for parents there are there is now so parents to address for each other. I don't give a child in the G two then you can take he help another family who has a child and NG to. Can you take your multi carrier except that's about dinner break that's so we didn't. And so that's what parents do is support each and we have a very active closed FaceBook page to. Okay and what I've discovered also is he used to be just kids with cerebral palsy but there's a lot of physical disabilities it look likes through policy. That may be genetic or maybe crumbs on all that are not. And brain injury and so we invite them to join us as well. Could you talk about how important inclusion moves. Conclusion is so important as somebody once said there's no specialist safe way. So on and his girl up. If they're not included then their their they're just sort of shuttled off to decide they don't. And what I found with Marie being in school is the kids all got to learn she's not that different from me. Oh she likes the same things I do she likes pizza and I screen. And she's really good in math on better than Miette math you know. And that did disability is doesn't mean. That fierce people are so different when really all the same we just move that that's what she says I just move a little different. Yeah what does that Lakeland that that first experience of trying to. Push inclusion what was that like. Difficult. I mean I fly it in 1997. When she started going to school everything would be included and it wasn't. Town but this school didn't have an accessible bathroom and didn't have a successful front door yet so those things happened with Maria being there. And parents yeah. Marie doesn't require them well wheelchair or walker out of all times does she know OK they're all that is that isn't of reality for. Many on some pincer and much and they can't. He can't transfer and they can't walk without. I'm you know without they can't walk so they have to be in the literature so. I noticed accessibility everywhere mean is that house a look at all these un skinny houses he'll never be accessible. Even for you know senior citizens I mean who end up in a locker so accessibility is important for. Moms and babies in strollers and for seniors and for people with disabilities not just for people with disabilities have accessibility is getting better rate is at this. Still is to go it's still testing guests on toys to housing is a huge issue. Got to San a lot of excess wheel house. But that's changing in the internal polling gives us his laws and blaze broke through giving things moving to Erick Erickson. Something had to look at the disease urging quick is she wanna throw on a project on that so their work and. Let's talk more about respite tell the did you make up that word. Is literally hours to UCP worry other UCP's around the country other affiliates usage so means respite hospitality could together. LA has a program where appearance getaway for two minutes and around him quite graduated to that I'd love to some day but. Yeah being able to get some respite is so important for parents to have a more positive attitude about their parenting. And you have local hotels and restaurants to get involved he knew if somebody listening wants to get involved how to do that. If a hotel once again conduct this call me he thinks yeah that's our preference is pretty simple act that should. You can go to our web site is a community for everyone got to work. And you can contact me there this community for every one dot org I can give him my phone number change you know certain finals three. 4670332. Call me during cleaning time 503467033. To give anything to to help support families who were on this very typical churning its. It's got a lot of benefits but it's it is very difficult. At the time when that when Marie was young did you get any risk totality. I did yes yes I did to this wonderful. That's also yet even after a divorce and be happy to go by myself and get a hotel room and get a break. So let's talk a little bit more about the walk Roland run when is that coming up against Saturday September 16. And what it's less than a month. So people concerned shown up around 930 bring. Yes so folks start showing up we have vendors we have our sponsors have booze and just fun activities. And tips will be there with their hit mobile selling doughnuts and attack in hot cocoa. So yes planning to do millionaire and getting your team photos and T and T going to be slower at the event starts pretty much at 1030 meaning the walk rule on the run politics up at 1030 that. Yeah join us go to the website watt roll the letter and run dot org and sign up because it's it's really a Sunday. And then went. We've saying earlier the route is a little bit different this year it is so for the first time we get to cruise crass that silicon rich and get the views from Matt races. Our old out. That is the coolest bridge and we're fortunate to Wear my studio is an hour in very close to it and they get to see it every day it's just like them. The coolest thing at Portland's going to be a while the love that produced attempt. Yeah come experience inclusiveness as we're talking about that because the main thing that I take away from my experience with UCP is. Folks with disabilities. Want like. Season in Greece say the same things that you know very similar similar ones. And I just want to say hi if years. Passing someone on the street and you find yourself staring loans are staring to say hi could you not to force anything else. Go out of your way at least to do the same as that you do if you just across in anyone else's path in the day and folks appreciate most often they're gonna be understanding and wanna talk with the kids especially have questions don't shy away from your kids go in what's going on in on asking don't feel. They'll let you know if they don't wanna talk about it or aren't interested. But. Make that effort to say hi and start the conversation. That's great advice did he can make it seems so simple. It is it is something that is perceived does that as late goal no I did and I can get involved in this and did you make it seems so simple and inclusive. No right. That's low point and what's led zillion. Clock rule the letter end run in the dot org senate community for everyone does or does there mean once had who cruel. Well thinkable Camilo showed today and he'll be talking with Susan Cushman family support director and Terry Kinney development coordinator bolt with united cerebral palsy. Of Oregon and southwest Washington thanks again. In metro scope is an Entercom radio Portland public affairs program I'm Gary blocks of if you're involved with a nonprofit or public affairs organization or do you have an idea for an upcoming show I'd like to hear from you. Visit microscope PDX dot com and submit your ideas you can also go to the station's website handsome richer information there. Thanks for listening to metals go and enjoy the rest of your weekend.