Preview Mode Links will not work in preview mode

Podcast With A Blindness Perspective.

Dec 21, 2018

Show Summary:

(Full Transcript Below)

In partnership with State Services for the Blind of Minnesota we are proud to present, PACER Center - Champions for Children with Disabilities. 

Barb and Kate sit down with Jeff Thompson of Blind Abilities in the sixth of a series of podcasts in partnership with PACER Center and State Services for the Blind. You can find the entire PACER Center series here.

Barb talks about her role as Co-Director of the National Parent Center on Transition and Employment and her experiences in advocacy that led her to PACER Center. Kate shares her experiences from her journey through her kids transition from youth into adulthood. What worked and where she found answers.

Join Barb, Kate and Jeff in this informative podcast about how PACER Center, State Services for the Blind and others played a role in the success of not only their kids transition into college, the work place and independence, but how Barb and Kate too, made the transition themselves in part by letting them grow.

From the web:

PACER Center enhances the quality of life and expands opportunities for children, youth, and young adults with all disabilities and their families, so each person can reach his or her highest potential. PACER operates on the principles of parents helping parents, supporting families, promoting a safe environment for all children, and working in collaboration with others.

With assistance to individual families, workshops, materials for parents and professionals, and leadership in securing a free and appropriate public education for all children, PACER's work affects and encourages families in Minnesota and across the nation.

Contacts:

You can find out more about PACER Center on the web at www.pacer.org

You can reach pACER Center by phone at 952-838-9000

You can find out more about State Services for the Blind on the web at

www.MN.Gov/Deed/SSB

And by calling 651-539-2300

Live Learn Work and Play

Thank you for listening!
You can follow us on Twitter @BlindAbilities
On the web at www.BlindAbilities.com
Send us an email
Get the Free Blind Abilities Appon the App Store.

Full Transcript:

PACER Center: Letting Them Grow – Transitioning from Youth to Adulthood - A Conversation with Parents Barb Ziemke and Kate Reinicke

Jeff Thompson:
State Services for the Blind of Minnesota presents PACER Center, champions for children with disabilities. This episode focuses on a parent's perspective of the transition period from youth to adulthood. We feature to speakers today. We have Barb Ziemke. She's the co-director of the National Parent Center on Transition and Employment. Also joining us is Kate Reinicke. She's the parent of three children with visual impairments. You can find out more about PACER Center and the National Parent Center on Transition and Employment on the web at www.PACER.org.

Kate Reinicke:
Have high expectations. Your kids can handle it. If they can't, you make an adjustment.

Barb Ziemke:
Desire to have my son included and to have meaningful experiences and not to be misunderstood or for people to judge his potential on the basis of assumptions.

Kate Reinicke:
Then after that it was taking care of. I didn't have to worry about it anymore. This was something he was handling.

Barb Ziemke:
Letting grow as a concept for young adults, especially those with challenges that do make this transition more challenging, as opposed to letting go.

Kate Reinicke:
Everyone was there with the same purpose. We all need information, we all want information, we all want to know how can we navigate this together. Everybody's there to help out.

Jeff Thompson:
Realizing the possibilities.

Kate Reinicke:
The blind abilities and possibilities.

Jeff Thompson:
Welcome to Blind Abilities. I'm Jeff Thompson. I'm at the PACER Center in Bloomington, Minnesota. Today I'm joined by Barb Ziemke. How are you doing?

Barb Ziemke:
I'm doing great. Thanks so much for being here today.

Jeff Thompson:
Barb, can you tell us a little about PACER Center and yourself?

Barb Ziemke:
Sure. PACER Center is Minnesota's parent training and information center that receives some funding under the Individuals with Disabilities Education Act to help families navigate special education, students on 504 Plans, any individual with a disability who requires support or services or accommodations.

Barb Ziemke:
PACER is here to provide information in family-friendly kinds of language to interpret the language or the law to language that helps families be the best advocate they can be to get what their students need to succeed. We like to support high expectations and help families know about the possibilities so that they don't feel alone on the journey. I like to say PACER tries to give both help and hope.

Jeff Thompson:
Well, that's great. How about a little bit about yourself?

Barb Ziemke:
Well, I came to PACER 17 years ago. I am the parent of two children: my daughter, Kristen, and then her younger brother, Brandon. When Brandon was born, he had an unspecific developmental disability with global developmental issues, including he has hearing only on one side and very poor fine motor skills and a variety of challenges, including intellectual disability.

Barb Ziemke:
As a parent, it just threw me for a loop. My background is education, but I didn't know anything really about disability or about special education, and so I dove head first into being involved in some local efforts to include families as much as possible in both policy and practices for helping young children with disabilities really have inclusive educations that led to great outcomes.

Barb Ziemke:
I lifelong have been an advocate for children, but when Brandon was in about seventh grade, I remember thinking, "I think I finally know what I'm doing around advocating as a parent within the education system. I wonder if there's any kind of job out there where you could help other families who maybe don't have a background in education or don't have the family support that I have, or maybe they don't speak English as their first language or they have a disability themselves." I thought of PACER and, fortunately, they had a job opening, and I became an advocate.

Barb Ziemke:
My primary role here for 15 years was as a special education advocate. Then a few years ago, PACER really realized that it's not enough to get students through school because the big challenge often is what some people call the transition cliff, when you have to make that transition into adulthood. We started the National Parent Center on Transition and Employment to support families and young adults as they launch into adulthood. I am co-directing that project along with our transition team here. We've partnered with State Services for the Blind for the last couple of years to provide more support for the pre-employment transition services, especially as it relates to family engagement in that process.

Jeff Thompson:
Well, you've done a good job with that. Let me go back a little bit. When you first realized that you had to start advocating, what feeling was that? Was it empty or were you lost?

Barb Ziemke:
Well, the first feeling was being overwhelmed and a bit scared. Mainly it stemmed, for me, and every parent is different, but I don't deal well with the unknown. I'm a researcher, I'm an information person. Because Brandon didn't have a specific diagnosis and his early prognosis was we're not sure if he'll ever walk, talk, be independent, it was difficult to figure out how to proceed when I didn't have any good idea of what the end might be. To plan with the end in mind when you don't know what the end could be was really daunting.

Barb Ziemke:
I had an older daughter, and although none of us can predict the future, I had basic expectations for her that were similar to my own life trajectory. Now I assumed she'd graduate from school, go to college, probably get married someday. Now I had Brandon, and I was supposed to make sure he got what he needed, but no one could give me a clear picture of where we were headed. Initially, it was pretty overwhelming.

Jeff Thompson:
Taking that experience, you brought that to PACER Center once you found them.

Barb Ziemke:
Exactly, because I remember what it was like. I also remember so much that desire to have my son included and to have meaningful experiences and not to be misunderstood or for people to judge his potential on the basis of assumptions. That drove my advocacy because I found that although the professionals who came alongside us were wonderful and we couldn't have accomplished what we did without them, that the parent voice was pivotal because other people can't care as much and they don't know as much. We are the experts on our kids.

Barb Ziemke:
It's just really drove what I do here at PACER because I really feel like if parents don't know how important they are in their role and if they don't have the support they need, that young people won't do as well. At the core of all this, I really care about youth and children success.

Jeff Thompson:
Oh, great. It's a great thing that PACER is doing. There's other parents that come here for the same thing now as you did.

Barb Ziemke:
That's right. Those parents who don't become a professional staff advocate, the families that come to our workshops and use our resources online, it's training to be the best advocate they can be as well as to help support them in helping their youth and young adult to be the best self-advocate they can be and to make this transition as families with some supports during the process.

Jeff Thompson:
One of those parents we have here today.

Barb Ziemke:
I'm so thankful that Kate Reinicke has joined us today. Kate and her husband participated in a workshop and a focus group for us. One of the things that I personally have found really challenging as the parent of a young person with a disability was this process that we're supposed to be engaged in of consistently letting go, and especially as we reach the transition years, I would hear from many professionals, "Barb, you just really need to start letting go."

Barb Ziemke:
I have to say that for me that phrase early was a little bit like in my face, a little bit too much. I thought, "You have no idea why I'm concerned the way I am about this and the legitimacy of those concerns." At our house, we're big fans of Charles Schulz. When I thought about letting go, the visual image I got was like I'm flying the kite and the kite is up now and I'm supposed to let go. Then I think of Charlie Brown's kite in the tree and the string all wound around the branches and I'm thinking, "There's no way I'm letting go of this kite."

Barb Ziemke:
Over the years, I don't know where I heard the phrase ... It's out there, other people use it ... "letting grow" as a concept for young adults, especially those with challenges that do make this transition more challenging as opposed to letting go. I found that when I looked at it that way, I could see more of a role for me. It wasn't just an, "Okay, I'm done now," it was, "How do I cultivate some soil? How do we find an environment that's appropriate for this kind of seed? What can we do to support growth in collaboration with professionals and others? Then place our young person there and back off a bit and let growth occur."

Barb Ziemke:
Over the years, I've learned that the hard way. Sometimes I haven't let grow as much as I needed to. If people are listening to this who know me, I pretty much kill all the plants I try to grow, so it's not the best analogy. I did a little research, though, about growing and the two things I found really interesting were that the size of the pot is really essential, that if the pot is too small, you'll stunt their growth of their roots. If there's not enough space around the plant on the top of the soil, the plant can't grow.

Barb Ziemke:
I just, as a parent, I could see that what my role was going to be was make sure that we had increasingly larger pots and that I gave increasingly more space. Really, as I talk to families, I like to try to help them envision the growth process more than the letting go at this point; although, of course, you're always, as parents, letting go. That's part of what we do.

Barb Ziemke:
As I was thinking about doing this as part of a podcast, my concern was I have the perspective from having worked with families from all different kinds of disabilities. Then my own personal perspective as a parent of someone with a developmental disability and intellectual disability, but I don't know what it's like to parent a son or daughter who has visual impairment or is blind or deaf-blind, and I really wanted that voice to be part of our conversation.

Barb Ziemke:
I immediately thought of Kate. She had participated in a focus group and I talked with her at a workshop. She and her husband have, I'll let her tell you, more than one child. She has a lot of experience and she's in the middle of it. I'm really thankful that Kate Reinicke agreed to be with us here today. I'd like to introduce you and ask Kate to tell us a little bit about herself.

Kate Reinicke:
Hello. I'm Kate Reinicke. I'm the parent of three children, all of which have visual impairment. They range in age from 17 to recently 20. Our oldest is a sophomore at North Hennepin Community College.

Jeff Thompson:
Kate, how did you find PACER?

Kate Reinicke:
My family, we moved up here in November of 2012. Our middle son is severely autistic. In moving up here, we needed to know what kind of resources and supports were available here. I actually found PACER through a Google search, looking for supports and resources for our middle son in regards to his severe autism.

Jeff Thompson:
With the visual aspect, did you find State Services for the Blind?

Kate Reinicke:
Actually, the visual teacher for the blind and visually impaired, TVIs, we have a great set of those in the Anoka-Hennepin School District. They actually got us in touch with State Services for the Blind. We signed up our oldest son at the age of 14.

Jeff Thompson:
Because that's the age where transition students can apply for services.

Kate Reinicke:
That's correct. I was surprised that it would be that young. In my mind, transition was graduating from high school and moving on to college or career. To have a child sign up at 14 was a pleasant surprise to think about all the training that they could do in those years leading up to graduation.

Jeff Thompson:
Some possibilities were opening up.

Kate Reinicke:
Exactly, the blind abilities and possibilities.

Jeff Thompson:
Plug. With all those possibilities coming your way, what was it like before that happened? There had to have been some doubt, some confusion, as Barb was mentioning earlier in her situation. Now here we are with the blindness, the visual impairment aspect. What was that like for you?

Kate Reinicke:
These are actually my stepchildren. Coming in not only as a step-parent but also starting to learn more about our kids' disabilities, we were also in transition about learning what their visual impairment was, what the cause of it was, how severe is it going to get. We learned through the years that it's actually a genetic disorder called Bardet-Biedl syndrome, and it causes the children to have retinitis pigmentosa. With retinitis pigmentosa, I'm sure most of your listeners know, tunnel vision, loss of color vision, and blind spots in your vision.

Kate Reinicke:
As we're learning more about that, it was very helpful to have the TVIs and State Services for the Blind there to show us that there were already pathways set for kids like ours that, unlike Barb, we weren't starting from scratch. There were programs and resources already in place that they could help us get in contact with. Like Barb said, I'm the type of person that if I'm presented with a problem, I want to know as much as I possibly can so that I can come up with a good solution, so that the more I can learn, the better I feel.

Jeff Thompson:
What were some of the first solutions that came across your pathway?

Kate Reinicke:
TVI definitely and working with the IEP process at schools.

Jeff Thompson:
Did something surprise you? Was there a moment like a wow moment?

Kate Reinicke:
What I learned with retinitis pigmentosa is that our kids can become virtually blind in low lighting situations. In a lot of cases, I'd never paid attention to that. Going to restaurants and realizing, "Oh, it's actually pretty dark in here. My kids are going to need a sighted guide by holding my elbow," or walking through the hallways of their high school, "This area is really not well lit. This is going to be a problem," but also realizing how much accommodations could be made for our children so that they could succeed, and also getting in touch with BLIND, Inc., where BLIND, Inc. stands for Blindness Learning in New Dimensions and understanding that there are not things that my kids can't do, they just have to do them differently.

Jeff Thompson:
Yeah. That's a local training center for adults and transition-age students in Minneapolis.

Barb Ziemke:
Kate, what you just said now just reminds me to the importance of that starting early. Most parents are not thinking about what's going to happen after school at age 14. They're just trying so hard to make school work. I just love that reminder that what you need, though, is several years at least once you've identified what they need to learn the skills to develop. You're learning what accommodations are helpful. You need that time, the technology. Waiting until 18 or 19 will not give you that time. That's one of the things that we try at PACER in our training with families is start earlier than you think you need to. I just really appreciate that illustration of age 14.

Barb Ziemke:
The other thing it just brought to mind for me, Kate, was I'm just wondering did you encounter any lower expectations for your children than you and your husband have or in general? Did you feel like the people working with your son or daughter, you have both, right, were on the same wavelength as you? Did you ever have to close that gap?

Kate Reinicke:
Thankfully, the folks that we were working with didn't have lower expectations. If anything, they were at the same school of thought as you are, that have high expectations, your kids can handle it. If they can't, you make an adjustment.

Jeff Thompson:
With that positive attitude that you have, how was it as your son started college and started spreading his wings a little bit?

Kate Reinicke:
Again, the more that I knew, the better I felt. Going to college myself, I never had the experience of working with a disabilities office or an accessibilities office. I didn't even know it existed. Coming to different workshops, either through PACER or through SSB, specifically focused on transition-age students and bringing in people from different universities that could talk about their disability offices or accessibility offices put both myself and my son at ease knowing that they already had mechanisms in place to help him and, again, not coddle him, not give him an advantage, but level the playing field.

Barb Ziemke:
That's so important. The whole idea behind all of this for families is that it's not just the son or daughter that's going to transition. We as parents actually have to transition as well. We're learning new skills, we're learning about what's out there, and we're having to change our approach.

Barb Ziemke:
One of the main things I emphasize when we talk to families about what comes next is like IEPs don't go to college and IEPs don't go into a workplace, and IEPs don't go to your resident manager of an apartment. While your role will change, you'll still have a role, but it will become more like an advisor, a mentor, a supporter, not the decision-maker. You're going to move from the driver's seat to the passenger seat and then, hopefully, the backseat and then out of the car at some point.

Barb Ziemke:
But in that process, Kate mentioned something so important, and I want to just address that. Kate sounds like a brave parent. I have some friends who are like Kate. They were able, unlike me, to learn about some new opportunity and just get some information and just send their kid off and be rejoicing as they went.

Barb Ziemke:
There are a lot of different kinds of parents, and I am more what professionals would call probably too cautious and maybe overprotective. I can still remember ... I kick myself to this day. My son is now ... He just turned 30. I do want to say he's living in an apartment in the community and he works at a community job. He successfully, both of us, made this transition.

Barb Ziemke:
But I remember early on there was an opportunity from his deaf, hard of hearing teaching said, when Brandon was in seventh grade, "Oh, I think it would be really great for him to go to Camp Courage. They have a literacy camp." I thought, "Oh, that sounds really good. Is it a day camp?" "No, it's a residential camp." I immediately thought, because of the needs of my son, "Well, that's not a possibility. He can't do that. He has other disabilities besides his reading disability, and you don't understand how much support he would need." It's all in my head, but I shut it down way too quickly. I went to the website and it didn't tell how they give the supports for overnight support.

Barb Ziemke:
This is a little reminder to professionals. Give us the information we need to make informed decisions upfront. Don't assume we know what you're talking about with your programs, because from our focus groups and surveys, about 30% of parents of kids who have blind, vision impairment have another disability with that. The support needs go beyond the support for their visual impairment. But, regardless, at this time I just shut it down and we didn't go.

Barb Ziemke:
Now that I work at PACER, I know about that camp and I know about the wonderful outcomes. I know now that camp has been around for 15 years, no child has ever been lost or probably injured. All the things I had in my mind that could have happened, I didn't need to base my decision on unfounded fears if I would have known upfront when I heard about the opportunity to take a breath and say, "What do I need to know in order to be able to do this? What does Brandon need to know upfront in order to want to do this?" Then do the detective work upfront. That has, all these years later, I think, "Gosh, darn it. He could have been ahead of the curve."

Barb Ziemke:
For those of you parents who do have some of the concerns and fears and your kids perhaps do have additional support needs, there are things that are dangerous for our kids out there. The safety concerns are not invalid. The unpredictability of an environment is a real thing. I just want to encourage you to take that breath and ask yourself: what would help me be able to even consider this? Sometimes it's talking to another parent like Kate, whose son has gone off to college. She might be willing to say, "Hey, it worked and this is why," or contacting PACER, State Services for the Blind, and get that information that you need.

Jeff Thompson:
Well, it sounds like Kate just pulls up tuck and roll and her kids just goes out there. I'm sure it's not that easy, though.

Kate Reinicke:
No, it's not that easy. This is after years of training myself to not be afraid for him. You have to decide what kind of adult do you want your child to be. Do you envision them being confident and independent, or do you envision them to be tied to your apron strings for the rest of their lives? My kids want to be independent. They want to learn Braille. They want to learn the technology. They want to have their own homes someday.

Kate Reinicke:
My husband teases them that they're going to live with us forever and it thrills me every time when they say, "No way, dad. No way." Keeping that in mind that they are still teenagers, they still have things to learn, thinking back to how did I learn to be independent and knowing that my kids need to go through the same thing just a little bit differently.

Jeff Thompson:
Exactly.

Barb Ziemke:
That reminds me, too, of just a really important principle of the dignity of risk. Some of your listeners may be familiar with that. Robert Perske, a long time ago, talked about how in our really well-intentioned efforts to keep people safe and to make sure that they don't experience harm, we sometimes take away the dignity that we all us adults should have in making choices and being able to make mistakes and perhaps even being allowed to fail.

Barb Ziemke:
Of course, there's risk management involved in this. Part of the trick for parents is this delicate balance between risk management and then offering the dignity of risk opportunity that all of us needed. If you talk to almost anybody who's successful in any field about how they got successful, they almost always come back to mistakes they made and what they learned from them.

Barb Ziemke:
I realized just personally for myself that my well-meaning flying in at the moment I notice that there was something that was challenging to my son, and a lot of things were challenging for him, was, as Kate said, I had to think to myself, but if I do it for him, what does his future look like versus could I just wait a minute?

Barb Ziemke:
I just read a phrase recently that, as our sons and daughters are moving towards adulthood, this young adulthood stage, that when they contact us with a problem, we should walk as if we're walking in molasses. Just slowing down this ... I don't know if it's true for other parents, but this immediate need to intervene, and even just start to, if your son is 14, 15, your daughter is 16, 17, you start to intentionally give it longer for them to be able to figure it out themselves. There's that quote "Mistakes are the portals of discovery", and so just allowing mistakes. I like what you just said about giving them those opportunities.

Kate Reinicke:
Like you said in becoming a mentor and a teacher, having our kids start to take over aspects of their lives that we had always handled, for instance, refilling a prescription, I taught my son how to do that. We put the phone on speaker phone, it's an automated system, and together we went through. I showed him how it was done. The next time he needed it, I watched him do it. Then after that, it was taken care of. I didn't have to worry about it anymore. This was something he was handling.

Kate Reinicke:
The same went with making his own appointments. He knows to check in with me regarding the family calendar and transportation, but learning also through his TVI that Metro Mobility is an option, Uber is an option to get him where he needs to go, that that works out, too. But he's also learning to check in with others to see how his schedule can mesh with others.

Barb Ziemke:
Which is huge for adult living, managing your schedule. I like what you said because it makes me remember, too, around the medication thing. When it just occurred to me we go to doctor's appointments together, and I would go to the desk and show them the insurance card. I thought, "What?" One day I just thought, "What am I doing this for?" There are things he can't do and he does need support for, but he can go and show them their card.

Barb Ziemke:
As parents, I think just thinking through, "Oh, wait a minute. Is this something they could do? Could we back off?" and now instead of doing for them, do with them. Then again move back. Perfect example with how much we schedule our kids and keep track of all their appointments. Now we have technology. Teaching them how to use the technology to do that is a great way to help them in this transition and for us to let go. I couldn't have let go or let grow like I was able to with my son when I say he's living in an apartment without technology because he has an iPhone, we have immediate communication, there's GPS built in. If he gets lost, he has emergency numbers.

Barb Ziemke:
I think as families, too, that's the kind of support that can help support you. My daughter doesn't have a disability, but when she had a cellphone, she used to call it her leash because she knew I could find her when she had it. That's one technique.

Kate Reinicke:
That's another good point that technology can be extremely helpful. I'm always grateful to SSB and PACER for introducing us to different technologies that I didn't know existed. On top of that, there are low tech options that are helpful for folks for everyday needs. My mother-in-law actually turned us on to Independent Living Aids and other vendors that sell very low tech items that actually we end up using every day that I didn't know existed. Again, the more you can learn, the better you'll feel.

Jeff Thompson:
What is the importance of meeting other parents of children with a disability as blindness?

Kate Reinicke:
It's been great to see how they're treating their kids and also to have them model behavior, if they've been working with their kids if they're kids are older, but also to just talk shop, for lack of a better word. When we sit down and chat, it's usually, "Oh, I just found this new app," or, "Oh, I just heard that such and such station is now doing video description," or, "I just heard my son's friend actually did an internship with a company that does video description," or, "One of the women that my stepdaughter rows with, she is fully blind now, and she just recently got a job working with a company, making sure that their website is more accessible to people who are visually impaired. It never occurred to me that that was a job. It never occurred to me that that was an option."

Kate Reinicke:
Being able to sit down with other adults that are either parents of youths or the youths themselves or recently adult, it's great to learn about the things that you didn't even know were out there. It's only by gathering information, sharing information, saying, "You know what? I tried this, I didn't care for it. I tried that, and I loved it."

Kate Reinicke:
Even between the children, my oldest son really enjoys his video magnifier and really liked the more low-tech version of it. That really worked for him. My youngest, she really liked the high tech tablet-driven video magnifiers that could do a few more things, but that was right up her alley. She loved knowing the ins and out of that technology. Also thinking that one size fits all, it's not true. Your kids have preferences just like anybody else, and it's great to find those.

Jeff Thompson:
In finding parents, PACER Center has a big hand in that, don't they?

Barb Ziemke:
I will say that one of my selfish motivations for coming to work for PACER was that I already understood that a real key to success was being able to access other families who had gone through similar experiences, but were perhaps a few steps ahead of me on the road. I knew that all the advocates here are also parents of kids with disabilities and that I would be talking with families a lot.

Barb Ziemke:
Honestly, and I say this in my workshops, I think about 80% of the real practical, tangible tips that I received about what app or what service or what program, even other services that are available, somehow came through another parent who mentioned it or I saw a resource around that. PACER, we don't do support groups per se, but I think our workshops are an opportunity to see that you're not alone in this. There's a lot of families who are doing the same kinds of things that you're working on and just informal conversations when you get involved in State Services for the Blind activities and you're dropping off kids or picking up kids.

Barb Ziemke:
Those are just organic opportunities to connect with families, but there are through resources online some great online supports for the family connect and other opportunities. PACER's page, the SSB partnership website page can refer families to other resources to connect with families.

Jeff Thompson:
Kate, you and your husband came here to the workshops.

Kate Reinicke:
We did. We first started with coming to the IEP workshops because that was a new process for us. Understanding what our rights were, what our role was supposed to be, and what schools were not only expected to do, but capable of doing for us was extremely helpful in not only being able to read the IEP and understand what it was saying, it can be a different language, the language of education. It can have some jargon in it that you're not familiar with.

Kate Reinicke:
Being able to sit down and work one-on-one with another parent advocate to say, "What does this really say? Is this actually helpful or is this just documenting all the things that are wrong with my kid?" After that, we signed up for the PACER newsletter and their mailings, and you can get very specific about what kind of mailings you would like to receive, to have the knowledge of what other workshops were coming up.

Kate Reinicke:
I would say one of the most helpful ones was the housing fair that you had held. My husband and I came to that as well to learn about what kind of options are out there for youths with disabilities and transition-age adults for where they can live, because they're not going to live with you forever and you're not going to be able to take care of them forever.

Barb Ziemke:
That's right.

Jeff Thompson:
Well, that's great information. Barb, how can they get a hold of PACER?

Barb Ziemke:
There's a few ways that you can do that. We do have a really great website with tons of information on it. If you go to the workshops and livestream, we do many of our workshops via technology as well. There is a list that you can sort by location, by date, by topic and take a look at what's coming up for usually the next three months or so. Again, signing up for our newsletters is a great way to stay in touch.

Barb Ziemke:
Our National Parent Center on Transition and Employment has a twice monthly e-newsletter that goes out that highlights all sorts of resources for all sorts of disabilities. These aren't specific to vision impairment, blindness, and deaf-blindness, but there's so much overlap between the laws you need to understand and what youth need to do to prepare.

Barb Ziemke:
You can also call and talk to a real person. It's one thing I really like about how we do business here. When you call, you'll talk first to someone at our front desk, who'll take some basic information, and then that will get routed to the most appropriate person to respond within PACER. We do, as Kate said, work individually with families around transition planning in their IEP. Advocates help if you're in disagreement with the school and you need to resolve that. We participate in conciliation and other methods for coming to agreement about educational plans.

Barb Ziemke:
Then our Transition and Employment website, there's an email link there. You can email us specific individual questions as well as just get help. We do a lot of resource and referral. I often say we don't know everything, obviously. You can't know everything. But we know a lot about who knows everything, and we try to connect families to who you need to connect with in order to get that question answered. That would be the primary ways.

Barb Ziemke:
Kate mentioned before that there is no one size fits all either to the students or to the parents. I think for parents who might be listening today who have young adults or children even with a visual impairment plus like perhaps autism or a severe ADHD or a mental health issue that's perhaps quite significant, you may be thinking, "Well, that sounds really great, but you don't really understand the challenges and how far behind we are in certain areas," and I don't understand your specific situation, but even for me, I found that having unrealistic expectations about the transition into adulthood was not helpful.

Barb Ziemke:
Typical youth nowadays are not routinely getting their college degree by age 21 and moving out of their family home. Adolescence has really extended up into the late 20s. For me, I realized that there was no way by age 21, when school was over, that we were going to have a plan in place for where our son would live, work, do everything that he needed to do.

Barb Ziemke:
I tried to go to a five-year plan. What do we want by age 26? What do we need to be doing to do that? I will say in our particular situation, it wasn't until our son was 28 that he was now living in an apartment successfully, had been to a college program for students with intellectual disabilities, which he didn't go to until he was 25, had work experience in between that he really needed. Take the pressure off yourself about the timeline, focus on what the hope for destination is there, and then just keep taking steps forward, and you will most likely come to a successful outcome.

Jeff Thompson:
It's great. Like Kate mentioned earlier about the pathways that she found that, Barb, you helped blaze earlier, pick up the bread crumbs that people have left behind and just take those and keep moving forward.

Kate Reinicke:
You may have to do some synthesis. You may have to take what you have learned in a workshop about helping students with autism and blend it with a workshop that you learned about how to help students with blindness. Chances are there will be another parent there who knows what you're going through and chances are that the moderator or the expert that they've brought in to speak about that topic has had to narrow it down to fit into the one to two-hour session. But if you take a few moments afterwards and ask them, "Well, my student has multiple needs. Can you tell me more information regarding my situation?" they will be more than happy to share their email, take a few minutes to chat with you, or give you information where you can find the answer to your questions. Please don't ever feel alone or that your situation is so unique that no one can help you.

Jeff Thompson:
It may seem that it's oceans apart, but there's so much common ground once you get down to the nuts and bolts of it all. Kate, the first time you came to a PACER Center workshop, what did you expect and what did you find out?

Kate Reinicke:
I expected to be ushered into a small conference room with a few chairs and someone with a screen down and a slide show, giving out a few facts here and there that maybe I could figure out how to utilize in my own life. I was shocked to walk in and find multitudes of parents. Your largest room was filled from wall to wall with parents like me, with kids like mine, with questions that I had. What was great was no one felt inhibited to ask question. Parents ask questions a lot.

Kate Reinicke:
Not only that, if there was a question that the moderator or the presenter possibly didn't know the exact answer to, sometimes there was another parent saying, "Oh, we just went through that. I can speak to that," or, "I'll talk to you afterwards." Everyone was there with the same purpose. We all need information, we all want information, we all want to know how can we navigate this together. Everybody's there to help out.

Jeff Thompson:
Now with the individual education plan, that's some place where you would have to get on top of, and advocate for. What was that process like as you ... The letting grow? Did you transition through that, too? You said age 14.

Kate Reinicke:
We did, not only with PACER Center's help but also with the TVI. They wanted to make sure that our kids, again, had a level playing field. SSB was great about allowing us to have technology evaluations and showing us what was available and coming to realize that there are so many different types of technology that our kids had options. What do you like? Do you like this? Do you like that? Do you prefer this? Do you prefer that? They could be in the driver's seat about what was most helpful for them.

Jeff Thompson:
That's great. At what point during the IEP did your son start speaking up for himself?

Kate Reinicke:
What was great about the teachers and the team that was put together for our kids was they made a point to specifically ask our kids questions and say, "Mom and dad, we don't want to hear from you. We want to know what does your kid need? What do they want? What have they noticed? And give them the opportunity to not only express what they found to be a problem or a challenge, but also encourage them, well, what do you think would be a good solution? Be able to participate in that conversation and that give and take over, well, what would be the best of all worlds and let's compromise to what works for you and what works for the staff."

Jeff Thompson:
That's when self-advocacy starts. That's a lifelong skill.

Kate Reinicke:
Any person, whether they have disabilities or not.

Barb Ziemke:
Looking for those opportunities to give them voice and choice I think is a key to it. Again, that swooping in-

Kate Reinicke:
[crosstalk]

Barb Ziemke:
... when we know that maybe we do know more and maybe we would have more to bring to the table, but allowing them that opportunity to speak for themselves is really powerful.

Jeff Thompson:
Kate, could you tell us a little something? Did you ever get the phone call or during a conversation where all of a sudden that light went off like, "Oh, my gosh. He's grown up"?

Kate Reinicke:
The light bulb went off for me that we'd reached a really good level with his independence when he could come home from class and say, "You know what? I had this problem," and my mind would immediately go to, "Oh, I need to jump in and fix this for him because that's my job as his mother," but I took a minute, I took a breath, I took a beat and said, "What do you want to do about it?" He said, "I already handled it. I walked down to the disabilities office and I explained what kind of problem I was having," or, "I walked down to the TRIO office and I explained the problem I was having. I sought help for myself. I'm just telling you about it. I'm not asking you to actually help me."

Jeff Thompson:
He's growing up.

Kate Reinicke:
Yes, exactly.

Jeff Thompson:
It goes back to you, Barb, let it grow.

Barb Ziemke:
That's a beautiful illustration of really what research even shows as, for young people in general, what they need from adults is for us to listen to validate their feelings or emotions about whatever the situation is and then support them in their ability to either fix it or take the next step. A perfect illustration of that.

Barb Ziemke:
One thing I wanted to talk about a little bit, too, is how I think sometimes it's harder for parents of kids who have challenges to make the shift at the same time as other students, like when they get to high school, to see them as high school students or to see them as a young adult. I learned that I needed to put on a bit of a new pair of glasses. My son has developed a mental disability, which delays him in many areas, but guess what? He still started growing a beard. He is becoming an adult even if intellectually he's at another stage.

Barb Ziemke:
Thinking through some of the things I wish I would have done earlier, for instance, if a son or daughter is still living at home, maybe even to go to community college. Perhaps it's time to move the bedroom down to the basement, give them a microwave and a mini fridge and redecorate a room that might still look like a childhood room to help them and to help you see them as the young adult that they actually are and are becoming. Just getting that shift from, "This is my child."

Barb Ziemke:
At PACER, we intentionally within our project here use the word "youth" instead of child when we're talking to parents, or young adult, because we as parents sometimes, they're our children forever, but we need to see them in this new light so that we can actually change the dynamic of our relationship.

Jeff Thompson:
You can't just squeeze them and keep them small like in The Waltons.

Barb Ziemke:
It doesn't work. I tried, it doesn't work. I think one of the tendencies for families who have students who are in high school particularly is to focus a lot on the educational component as far as academics. Academics are really important. With an overlay of visual impairment, there is a lot of work that has to be done to make sure that they do well academically. The skill acquisition around literacy skills is huge for successes in adults.

Barb Ziemke:
That's all important, but I think families need to consider once the school bus doesn't come anymore, once school is out of the picture, what you got on the history test may not be all that important unless your hope is to be a historian, and to look holistically at what are you focusing on. We know for students with visual impairments, blindness, for instance, having experiences in recreation and leisure, physical activities, extracurriculars, those are often where skills are developed that are going to actually allow them to have the confidence they need to have when they're in an unfamiliar environment, and that often families ...

Barb Ziemke:
And I don't have that perspective, but I have one from my own perspective of in trying to protect them from these environments that seem fraught with danger when you are feeling like you don't have the ability to navigate them, high school's really a time to look for those opportunities and, again, then work with your IEP team or State Services for the Blind to come up with what are those accommodations, what are those safety nets that could be put in place so that they don't lose that experience.

Barb Ziemke:
Social skills are going to be huge, and that's usually where those are developed, not in academic classrooms in high school. Really broadening your perspective of school is not really all about academics. College degrees don't really of themselves guarantee success. Looking at the big picture.

Kate Reinicke:
A couple of things that I wanted to mention that also helped our family and I feel could help other youths and parents alike is to have experiences with role models. I can honestly say as an adult in her 40s I had not met more than two or three visually impaired people in my everyday life. Now that my children are becoming more involved in the blind community, having those opportunities to meet other adults who are independent and successful not only can assure parents that it's possible, it is possible.

Kate Reinicke:
I know it's hard for you to imagine because you rely on your vision so heavily, it is possible to live an independent life without your vision and to then also show your children, your youths that there are successful adults out there doing what they like to do, doing what they want to do, and not feeling marginalized, not feeling that they can't. Again, they're just doing things differently.

Kate Reinicke:
Being involved in programs through SSB, Sheila Koenig had some really great programs. It was a job fair where all of the participants were blind adults. They ran the gamut from working in corporate America to being a package handler at UPS. The students could walk through and talk to everyone about how they were able to do their jobs successfully as a visually impaired person. I think that inspires our kids and also puts the parents at ease.

Kate Reinicke:
My kids have had great experiences with Courage Kenny Rehabilitation Institute with their adaptive sports programs. Again, they have to interact with the coaches and volunteers. I back off. I'm not going to be helpful as my stepdaughter is snowboarding down the hill. Their SHARE program, I can't highly recommend enough. Whatever activities your child enjoys, Stacy Shamblott can find them and find ways to make them adaptive to whatever supports your child may need.

Kate Reinicke:
My oldest son really enjoys playing the drums and has had the opportunity in the past few years to play in bands in bars and give performances and not have us hover over him. He did just fine. It was wonderful to see him express himself doing something that he loved and having an audience cheer.

Jeff Thompson:
Role models. That's very important. Like when you said you only knew two or three people or just met two or three people, but when they can meet a peer, someone their own age, and like, "How are you doing that?" or, "They can do it. Why can't I do it?" it just increases their self-determination and it just seems to roll after that.

Barb Ziemke:
I think a key component of that for all of us parents in this letting grow process is coming to terms with some of the limitations and there will just have to be some supports and ways that we ... Accommodations in place, but focusing, like Kate just said, on the strengths and the interests and the preferences. What makes this kid tick and how can we use that to launch them into adult life? Because who of us wants to have a job we don't enjoy? When we define ourselves, like if the three of us had more time to talk, I could probably see you get really excited when you talk about some of your personal interests or hobbies or things that you really like to do.

Barb Ziemke:
I think as parents, I always say we need to be strengths finders, strengths finder 101 to our youth and young adults. Sometimes they don't see it, and to notice what they're good at and not, again, make it all about academics but who they are and what they can contribute and how their personality and their relational skills call that out and help them see it, because that's really what they'll build their future off of.

Jeff Thompson:
I think this has been a great conversation for anyone that's listening to take all those analogies that you used, Barb, in the beginning that was so great, about the plant, the pot size, and the space needed to grow, and then the apron strings. I've heard that so many times, but when you can actually apply it and see [inaudible] you have to respond and let it grow, that's awesome. Thank you, Barb, thank you, Kate, for coming onto Blind Abilities. Thank you, PACER Center for putting this together with State Services for the Blind.

Barb Ziemke:
Thanks so much.

Kate Reinicke:
Thank you.

Jeff Thompson:
Be sure to check out PACER Center, champions for children with disabilities, on the web at www.PACER.org. Check out State Services for the Blind of Minnesota at www.MN.gov/deed/SSB. Live, learn, work, and play. A big thank you goes out to Chee Chau for his music. You can find Chee Chau on Twitter @LCheeChau.. From PACER Center, State Services for the Blind, and Blind Abilities, thanks for listening. We hope you enjoyed. Until next time, bye bye.

 [Music]  [Transition noise]  -When we share

-What we see

-Through each other's eyes...

[Multiple voices overlapping, in unison, to form a single sentence]

...We can then begin to bridge the gap between the limited expectations, and the realities of Blind Abilities.


Jeff Thompson:
For more podcasts for the blindness perspective check us out on the web at www.blindabilities.com. On Twitter @BlindAbilities. Download our app from the app store, Blind Abilities, that's two words. Or send us an email at info@blindabilities.com. Thanks for listening.