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PACER Center: Promoting Awareness and Understanding of Mental Health – Children’s Mental Health and Emotional or Behavioral Disorders Project
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Children’s Mental Health and Emotional or Behavioral Disorders Project Coordinator Renelle Nelson joins us and gives us an overview of Mental Health and what services they provide to Parents and children surrounding the topic of Mental Health.
Renelle sits down with Jeff Thompson of Blind Abilities in the third 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.
Renelle talks about the resources available to parents of children with mental health challenges and the vast amount of information available at PACER Center and on the www.PACER.orgweb site. From advocacy to a better understanding and a pathway unique to your situation. Learn more about what PACER Center can offer you and your family.
(from the PACER.orgweb site)
Families of children with mental health, emotional and behavioral needs often navigate multiple systems to access necessary supports and services. Families may also face additional challenges due to stigma about mental health. PACER’s Inspiring Opportunities Project will bring together parents, youth and professionals to help families receive the resources and support their children need. This project will also promote increased understanding of children’s mental health, emotional, and behavioral need in the broader community.
Be sure to check out our upcoming PACER Center podcast focused on self-advocacy during the transitioning to Life After High School process.
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
And by calling 651-539-2300
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Thank you for listening!
You can follow us on Twitter @BlindAbilities
On the web at www.BlindAbilities.com
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Full Transcript:
PACER Center: Promoting Awareness and Understanding of Mental Health – Children’s Mental Health and Emotional or Behavioral Disorders Project
[Music]
Renelle Nelson:
Being blind may be very different from another person’s feelings about what it’s like to have a vision impairment or not be able to see.
Jeff Thompson:
State Services for the Blind of Minnesota presents PACER Center, Champions For Children With Disabilities.
Renelle Nelson:
One of the things we work very hard to do is make sure that parents know that they are part of the solution, and they are not the problem.
Jeff Thompson:
In this episode, we’ll be talking to Renelle Nelson, coordinator of the Children’s Mental Health, and Emotional, or Behavioral Disorder Project.
Renelle Nelson:
We need to understand that behavior is coming from an unmet need, and respond to the unmet need, and not react to the behavior.
Jeff Thompson:
Renelle will talk about the challenges, the misconceptions, and the opportunities for children and young adults to reach their fullest potential.
Renelle Nelson:
Young adults with a vision impairment or blindness who are fully capable of holding a job, and being trained to do a good job, and would be good workers, often, because of their impairment, may not be considered.
Renelle Nelson:
We don’t provide roadmaps for services. What we do is provide roadmaps unique to each individual.
Jeff Thompson:
And you can find out more about PACER Center and the Children’s Mental Health, Emotional, or Behavioral Disorder Project on the web at www.pacer.org.
Renelle Nelson:
Children with severe depression or significant anxiety work to protect themselves, and the behavior that they’re doing is operating out of fear and self preservation, and not out of aggression or violence.
Renelle Nelson:
We can’t help people work harder, but we can help them work smarter. You can call us at 952-838-9000, and between the hours of 9:00 and 5:00 you will hear a real live person answer the phone, and they’ll have a conversation with you.
Jeff Thompson:
Produced by Blind Abilities, in part with State Services for the Blind of Minnesota. Live, learn, work, and play. We hope you enjoy.
Jeff Thompson:
Welcome to Blind Abilities, I’m Jeff Thompson. Today we’re at PACER Center in Bloomington, Minnesota. I’m talking to Renelle Nelson, and she’s the coordinator for the Children’s Mental Health, and Emotional, or Behavioral Disorders Project. How you doing, Renelle?
Renelle Nelson:
Fine, thank you.
Jeff Thompson:
I want to thank you for taking the time out of your day and speaking with our listeners on Blind Abilities. This is part of State Services for the Blind as well, so thanks for being here.
Renelle Nelson:
You’re welcome.
Jeff Thompson:
So Renelle, what is PACER and what do you do here with the mental health project?
Renelle Nelson:
PACER Center is a nonprofit organization that helps parents and families of children and youth with disabilities by giving them information, training, and support so they can be informed advocates. We have over 30 projects here to support families. We offer individual assistance, workshops, publications and other resources to help families make decisions about education and other services for their child or young adult with disabilities. We operate on that principle of parents helping parents, supporting families, promoting a safe environment for all children, and working in collaboration with others.
Renelle Nelson:
The Children’s Mental Health and Emotional or Behavioral Disorders Project that I oversee is specific to helping provide that information, support, and resources to families of children and youth with mental health, emotional, or behavioral disorders. We believe very strongly that all children and youth deserve opportunities to reach their potential.
Jeff Thompson:
So Renelle, how common are mental health and behavioral challenges?
Renelle Nelson:
Challenges in emotional development and wellbeing are common for all children. Current national statistics indicate, however, that one in five struggle with a serious emotional disturbance that interferes significantly with their functioning at home and in school. In Minnesota, for example, 9% of school aged children and 5% of preschool children have serious emotional disturbance, and an estimated 109,000 children and youth, birth to 21, need treatment for that serious emotional disturbance.
Renelle Nelson:
Children and youth who have these challenges related to their emotional needs can achieve success in life and at school. However, sometimes they need that support and information that our Children’s Mental and Emotional, Behavioral Disorders Project can offer them to make that a reality.
Jeff Thompson:
Renelle, can you share with us some of the misconceptions surrounding mental health?
Renelle Nelson:
Because mental health needs are usually not visible, our recognition of it, and our response to those symptoms that come from having unmet mental health needs is often inaccurate or sabotaged. While our society is moving towards better understanding of these mental health needs, and mental health wellness, there are misconceptions that still exist.
Renelle Nelson:
I happen to think there are probably six of these top misconceptions that are worth talking about. First of all, there is a misconception that children cannot have a mental health disorder. As previously stated, one in five children and youth struggle with their mental health. It’s interesting to note that 70% of adult mental illness begins during childhood or adolescence. Current statistics show that 79% of those children and youth who receive help improve significantly with treatment and support. So children can have a mental health disorder.
Renelle Nelson:
Another misconception is that the parent, or the way the child is being parented, is at fault for the child’s mental health, emotional, or behavioral problems. The reality is that mental health disorders in children are a result of biology, environment, or a combination of those two. They can be caused be genetics, or biological factors, or the result of abusive or neglectful treatment, or stressful events.
Jeff Thompson:
Renelle, sometimes in the blindness community I find that some parents are a little bit ashamed, or there’s a stigma with it, you know, “My child has a disability.”
Renelle Nelson:
Absolutely, yes, there’s a stigma related to children who have mental health needs. Because it is historically been looked at as a problem from the family, or the parent, and how the parent is parenting the child. But research has showed us that in fact is a terrific error in thinking, and that children and youth, especially younger children who are diagnosed with mental health needs are more likely to have those needs resulting from a biological or genetic foundation or basis, or stressful event that they’ve endured.
Jeff Thompson:
So the parents can actually come to PACER and get some answers, or resolutions for themselves too.
Renelle Nelson:
Absolutely. One of the things we work very hard to do is make sure that parents know that they are part of the solution, and they are not the problem. And we work very hard with them to help them develop their voice, so that it’s positive, that they communicate what their children need, and that they have enough information to be able to help support what their child needs appropriately.
Jeff Thompson:
Great.
Renelle Nelson:
Another misconception is that children and youth with mental health needs are more likely to be violent, or cause harm. There is absolutely no data to show a connection between mental health needs and the tendency to be violent, or aggressive. Children with a major mental health illness or need are more likely to be victims of violence than perpetrators of violence.
Jeff Thompson:
Be victims?
Renelle Nelson:
Absolutely. Children, especially children with mental health needs are less likely to be able to problem solve situations, to feel comfortable getting support or help, or to know how to get support or help for these mental health needs that they have. They’re difficult to understand, mood swings can alter our thinking, so that we don’t look safe, or we don’t feel safe. And as a result, we try to take steps to increase our own safety by preventing getting hurt. And so sometimes children with severe depression, or significant anxiety work to protect themselves, and so their behavior that they’re doing is operating out of fear, and self preservation, and not out of aggression or violence.
Jeff Thompson:
And that’s got to take a lot of energy away from just trying to be in the moment while you’re just trying to be out of the moment, kind of.
Renelle Nelson:
Exactly. Exactly. And children don’t have the skills that adults have to take care of themselves. They rely heavily on the adults around them to help support them. So when we misunderstand the behavior, and if it’s coming from an unmet mental health need, we’re likely to react to that behavior with inappropriate responses.
Renelle Nelson:
It’s part of the danger of misunderstanding what we see. How we need to understand that behavior is coming from an unmet need, and respond to the unmet need, and not react to the behavior.
Jeff Thompson:
And this goes true in education with teachers, directors of programs and stuff, wherever they may be, that they understand that is what’s going on.
Renelle Nelson:
Absolutely. In Minnesota, we’ve worked very hard to give our teachers, and administrators, and school people resources and support around helping to be able to identify, to intervene appropriately, and to help support children who have emerging mental health needs, or mental health needs. But it’s a huge endeavor. While training is ongoing, and our State Department of Education has worked hard to give those kinds of supports and opportunities to school districts, we still have a long way to go to be able to manage the increasing numbers of children and youth who are attending our schools and who have unmet mental health needs.
Jeff Thompson:
That’d be great to have all the public schools to be a safe zone for growing and them sharing, and educating them about their mental health, and learning.
Renelle Nelson:
Absolutely. And that kind of brings me to another misconception around mental health. Sometimes children and youth with mental health needs are not viewed as being smart, and that they lack intelligence. And there’s absolutely no link between intelligence and mental illness. It’s true that certain mental health needs may limit a child’s ability to access learning, and equal to their ability to learn, or the level of learning that their peers are managing, but there’s absolutely no link between mental health needs and intelligence.
Jeff Thompson:
That’s interesting, because that’s almost … I mean, I’m not saying I’m a perfect person of judging people and all that, but when you’re out in the world and stuff like that, there’s a tendency, I don’t know where that comes from, to think that, just like in blindness there’s a tendency to think you’re just like everyone else that’s blind, you know? That you must know all the blind people, because you’re blind and all that. So to be grouped or categorized, or stigmatized, or stereotypical ideas that people have puts them at a disadvantage.
Renelle Nelson:
Absolutely, it does, and that’s part of the stigma that we need to continue to work on breaking down. We need to see people, children and youth, and young adults and adults who struggle with their mental health as just people who are struggling with their mental health, and not stereotype them into a category that because they’re unpredictable, or because they have mood swings, they therefore must not be smart enough to do a job, or they might be unsafe. That absolutely is an incorrect assumption, and we need to continue to work to break that down.
Jeff Thompson:
They know they have mood swings, they know they have difficulty sometimes putting one and two together sometimes in situations they may not have been taught or learned how to react to some things, so that must be a real struggle.
Renelle Nelson:
It is. And that’s part of the value of getting treatment, and that’s part of the value of getting adequate support at school.
Renelle Nelson:
Children don’t know what to do. Many young adults who have emerging mental health needs don’t have the skills and the strategies they need to be able to cope with their mood swings, or the behaviors that are resulting from their unmet mental health needs. And so as a result, when you don’t know what to do, you just do what you can to preserve yourself, and take care of yourself. And sometimes those end up being very negative behaviors, or very concerning behaviors, or atypical behaviors. And unfortunately, that can increase the stigma.
Renelle Nelson:
So really, the message here is really that we need to be able to view this in the lens of recovery and wellness. And we need to be able to help children, youth, young adults, and adults who have mental health needs so that they can get the kind of support and interventions that they need to stay healthy and well.
Jeff Thompson:
Great.
Renelle Nelson:
Another misconception is that a child with a mental health need is never going to fully recover. I want to be clear that mental health need is not an indication of a child’s potential for finding happiness and fulfillment. I already started that early intervention is key to helping a child, or youth, or adult learn how to manage or overcome their symptoms, and develop into a health adult.
Renelle Nelson:
But saying that they’re never going to recover is totally inaccurate. A child with a mental health need is a child with a mental health need. A child with blonde hair is a child with blonde hair. And so we need to understand that this is part of who that person is, they need to, through support and resources, help them discover their fullest potential so that they can find success in life.
Jeff Thompson:
Yeah, especially when they’re setting up an IEP, or there’s another one I was reading about, the section 504. But there was one that really caught my attention was … I think it was a PBIS-
Renelle Nelson:
Positive Behavior Interventions and Supports, absolutely. So, there’s two different ways we can look at positive behaviors interventions and supports. For students who qualify for special education services, we actually have in the federal special education law that for a child who is having behavior that is keeping them, or others around them, from making adequate progress, the IEP team needs to look at positive intervention strategies and supports to address the challenging behavior. This is a clear statement that punishment doesn’t change behavior.
Renelle Nelson:
What the law’s attempting to do here is to say IEP teams, schools, teachers, you need to look at how to teach this child positive ways to get their needs met. So for example, a child who is feeling very anxious, and is starting to feel uncomfortable about sitting in the seat that they’re in at school, and is feeling people are too close to them, and this is all perhaps a result of an anxiety disorder that they have, they need to know how to help take care of themselves in that situation. Rather than exploding, using inappropriate language, bolting out of the classroom to try to take care of themselves, they need to have a plan, or a strategy to be able to use to help calm themselves down or take care of how they’re feeling. So they don’t have to leave the classrooms, that they don’t have to make a spectacle in that room to get their needs met.
Renelle Nelson:
That’s a positive intervention. Teaching them a skill, teaching them to take a break, teaching how to communicate to their teacher that they need a break, those are all things that can be taught through an IEP. So that’s what Positive Behavior Interventions and Supports is about. It’s about helping the child learn skills and strategies and develop a plan to help them manage those challenging behaviors that they may have as a result of their disability.
Renelle Nelson:
Positive Behavior Interventions and Supports is also a very unique discipline approach. There’s been a lot of research on Positive Behavior Interventions and Supports nationally. And it is a method of teaching children behaviors that are expected, and teaching to those behaviors in certain places in that child’s life, and then practicing them, and reinforcing them, and rewarding the use of them. So it’s like grandma’s rule, catching a child doing the right thing.
Renelle Nelson:
So in a school, a Positive Behavior Intervention, a school wide Positive Behavior Interventions and Supports would look like this. The school would come up with two or three different things that they think are important for every child in their school to know. For example, being responsible, being respectful, and being safe. And then they would take time to say what does it mean to be respectful in the hallway? What does it mean to be responsible in the hallway, and what does it mean to be safe in the hallway? And they would teach to those three things, the behavior expectations that they would expect to see under being respectful, responsible, or safe in the hallway. And then they would catch the children doing that behavior. Instead of catching them running in the hallway, they would reward them when they’re walking in the hallway, because perhaps that was one of the things they taught around safety in the hallway.
Renelle Nelson:
So it’s a way of redefining discipline so that children are taught the expected behavior, and are using that behavior, are caught doing that behavior, and it just becomes the behavior that everybody uses.
Renelle Nelson:
Positive Behavior Interventions and Supports have shown great success in decreasing suspensions, detentions, out of class referrals, and as a result, increasing test scores, increasing graduation rates. Because when children are in school, and they’re exposed to instruction, and they understand what’s expected of them, you’re going to have a ton of students who are successful students. So PBIS is a really terrific, wonderful opportunity for schools to use a positive approach to discipline.
Jeff Thompson:
I could’ve used some of that.
Renelle Nelson:
Yeah. It’s a different way of thinking, for sure.
Jeff Thompson:
It is.
Renelle Nelson:
And many parents, in fact, on PACER’s website, we have information about PBIS, and we also talk about how parents can use it at home to help support their children who may have challenging behaviors as a result of their disability needs. So, there’s lots of opportunity for parents to go onto our website, key in PBIS, and look for that kind of information.
Jeff Thompson:
And that’s what it’s really about is education the parent so they can be the best advocate for their child, too.
Renelle Nelson:
Absolutely. Absolutely.
Renelle Nelson:
On the last misconception I kind of want to talk about, is that schools cannot help a student with mental health needs. It’s true that schools are not treatment providers. Their responsibility is to educate the student. And they want their student to be able to reach their true potential, be responsible, respectful, and contributing members of society. Schools can, however, provide support for students at school through a variety of programs, including the one we just discussed, PBIS. And some students may be eligible for special education services, or you mentioned earlier a 504 plan.
Renelle Nelson:
So a 504 plan is a plan for accommodations and modifications to help support a student who, because of their disability, may need some extra support at school, but may not need direct instruction through special education. For example, a 504 plan could offer a child with anxiety a preferred seat near the classroom door, so that if they start to feel overly anxious or overwhelmed, they could use, as another accommodation, a back pocket pass they already have. They can get up, they could put it on their teacher’s desk, they can leave the classroom, go down to a designated place, like a school social worker’s room, or a different place where they feel safe, a trusted teacher or person that they have a relationship with, and be able to work on decreasing their anxiety so they can stay in class.
Renelle Nelson:
That’s far different than putting a student with anxiety in the middle of the room of 30 other students, feeling the same way, needing to leave, not being able to get out without getting the teacher’s attention. The teacher is busy working with students or perhaps in the middle of a lecture. And so the student would then probably have to use a behavior to get out of that setting. And the behavior would likely be negative behavior. Bolting from a classroom, being disrespectful, getting attention in a negative way so that they can get out.
Renelle Nelson:
So there’s a significant difference between how a student with special education services gets support, and a student with a 504 plan gets support, but both of them can be equally supportive to students with mental health needs.
Jeff Thompson:
And the educators, the teachers, do they go to conferences and learn some of this? Is there pamphlets, how do they stay on top of all this?
Renelle Nelson:
Great question. So general education teachers, in order to get their licensure, you usually have to take some kind of class around special education services, and 504, and the laws that are around education. A 504 particularly is general education law, this is in special education. So any student with a disability, and if that disability has negative impact on their ability to learn has the right to a 504 plan. They do not have to go through an evaluation process like they would have to for special education.
Renelle Nelson:
But if a child is needing special education services, or a 504 plan, the general education teacher should have enough awareness to be able to say to a parent, or to another person in their school, “I have concerns about how this child is learning, and perhaps we need to start thinking about how we can support this child in a different way.” This is covered under a law actually called Child Find. Which is a federal law that requires schools to have in place policies and procedures for staff to be able to help identify students who may, because of a disability related need, need that kind of support.
Jeff Thompson:
What advice would you have for a parent who may be concerned about their child having behavioral or emotional disorders?
Renelle Nelson:
Sure. Sometimes parents contacting PACER already have an awareness that their child is struggling with some type of challenge that’s impacting their school experience, their relationships, or their ability to engage in the community around them, make and keep friends, and play well, and be liked in the neighborhood. And it helps for us as parents to recognize we’re not alone, and we’re not blame, and there are ways to take positive steps forward in partnership with our child, family, and others to work with this situation.
Renelle Nelson:
Parents who call us often share their frustration about not being able to get the type of support that helps their child make progress. Or they’re feeling that they’re struggling with a conflict between themselves and their child, and that can be directly related to symptoms that go with a behavioral health challenge.
Renelle Nelson:
So our advice to parents is to continue to work to proactively support their child. We encourage them to look at the behavior as the child, not that the child won’t do what they’re asking them to do, but they can’t do what they’re asking them to do. So to look at it from a different perspective. To look at is an unmet need, and to try to take steps that will either help them get more formal support through some of these things we’ve already talked about at school, special education, or a 504 plan. And, or informal supports, maybe through their family, or friends, or groups in the community that may help to support them if their child has already been identified with a diagnosis.
Jeff Thompson:
I think the parents meeting other parents with children who have this is a great thing, because it seems like in my experience with parents of blind children, when they get together it’s like resources, they can talk about what works, what doesn’t, there’s someone that’s … because when you realize there’s something wrong, or something, I think coming to PACER’s great because that opens the door for all that to happen, because otherwise you’re kind of alone.
Renelle Nelson:
Yeah, absolutely. And we are a parent to parent model. So most of the advocates at PACER Center who work with families are parents of children with disabilities, or siblings. And we’ve all had that kind of experience of feeling singled out, feeling alone, looking for a way to connect, not knowing how to make those connections. And sometimes feeling powerless, even though we know the most about our child.
Renelle Nelson:
So that’s, I think, the beauty of reaching out to a place like PACER Center, or a parent resource and information center. Is that we understand those feelings, we can validate them, and then we can help that parent learn how to move forward from those feelings so that they can be more successful in advocating for what their child and their family needs.
Jeff Thompson:
That’s such a great resource.
Renelle Nelson:
Thanks.
Renelle Nelson:
One other question that I think sometimes we may consider is when parents call PACER, and they have a child with mental health issues, what can they expect? And I think that’s a really good question. Not a week goes by where I don’t get at least one or two calls from a parent who says, “I was told to call PACER, but I don’t even know what you do.” And as a parent of a child, now young adult, with disabilities, I know that feeling, and that’s exactly what I was told. My neighbor came to me and saw my son with some really significant behaviors going on, and recognized that I needed more support than just what perhaps I could give them at that time, and she said, “Well have you ever thought about calling PACER Center?” And I hadn’t, because I didn’t know about PACER Center.
Renelle Nelson:
So, we try really hard to get our information out there, and that was before the explosion of the information age, so networking back then was even more difficult. We do have a great website, and we’ve gotten calls from literally all over the world, from parents who have wanted to know more about what we do, and how we can give them support. We do a lot of things, we do individual advocacy, specifically to families in Minnesota, we are very aware of the laws, the statutes, and the rules that help support our families of children and youth with disabilities.
Renelle Nelson:
So while we’re not giving legal advice, we certainly can help parents understand the laws that are the foundation and the framework for what they might need to be asking for, or the kids of services they’re looking for, and help them get those kinds of needs met. We also offer trainings, workshops to parents, and in-service to professionals. The workshops that we offer throughout the state, for parents, are also open to professionals, and they’re free. We give resources during that time. We do a lot of one to one support during that time, and many of the workshops that we do now we also do on Livestream so that we can archive them and families can go back and look at them through our website. So that’s another way that we do outreach to families and professionals.
Renelle Nelson:
We do a lot of writing. And especially in the summer months, when children are typically not in school and our calls decrease from parents and professionals. We put a lot of effort into writing family friendly resources, making videos, short videos that can go onto our website so that families can just Google for information and get the information that they need in a short amount of time. We try to expand our educational efforts and supports for families and professionals that way as well.
Jeff Thompson:
I think that’s one of the greatest things that I’ve been noticing about PACER is because when I first lost my eyesight, just as an individual, as an adult, it was what do I do? I don’t even know where they keep the blind here. You know, I was naïve. I did not know anything about it, and then I just got little tidbits here and there and I had to piece all of this together. But someone that calls here comes through the door, gets yours newsletter, at least they know that there’s something, and they can get educated because I’ve always a interest in like pottery, but I would have to really dive in. But this is where the parents can dive in to further understand more about mental health.
Renelle Nelson:
Exactly. And we don’t provide roadmaps for services. What we do is provide roadmaps unique to each individual. And so, that being said, this is a very unique organization in that we do one to one advocacy. So it’s very individualized. Your feelings about vision challenges, impairment, being blind may be very different from another person’s feelings about what it’s like to have vision impairment, or not be able to see. And it’s the same for a person with an anxiety disorder, or depression. They may feel very differently about themselves and how they can navigate the world around them.
Renelle Nelson:
And so we work very individually with each person that calls to PACER to make sure that they get the information they need, but that it’s individualized to what their needs are. And we also, I want to add, have a multicultural staff at PACER center. And our multicultural staff is very important because, especially in the realm of mental health, there are varying degrees of cultural differences around where mental illness comes from, or what it’s about. And we want to be able to respect those cultural differences, and work with communities who believe very strongly in their own resources.
Renelle Nelson:
So we a Hmong advocate, we have a Somalia advocate, we have a Latino/Hispanic advocate, and African American advocates, and a Native American advocate, all who understand those cultural differences and are able to help support families with their cultural needs respectfully.
Jeff Thompson:
So there’s not one manual for everybody.
Renelle Nelson:
No, there’s not. And that’s what keeps us so busy.
Jeff Thompson:
Yeah, I remember I used to teach blind, vision impaired students and adults, and someone said, “Let’s make a manual.” And I rebutted that, or went against that, I said, “I’d have to write a manual for every individual.”
Renelle Nelson:
That’s exactly right. Exactly.
Renelle Nelson:
And so, we take a lot of care in making sure that we listen really carefully to what the family’s needs are, and what their goals are for their child, and work within their culture, and their beliefs. It’s not our job to judge what they do, or to agree even with what they want. Our job is to give them the resources and the information they need or are looking for so they can move forward with their goals and their dreams for their child.
Jeff Thompson:
You said something earlier, something happiness and something … because usually everyone says, “A goal of employment, or this, or that,” there’s always this spot. But when you said something earlier, I forgot what it was, it was something about that they achieve in life happiness and-
Renelle Nelson:
Significance. And I think significance is important, because I think everyone wants to feel that they have a place of meaningfulness in their life and in what they do. And children do too. Even the youngest child wants to feel important and valued. The struggle when you have a disability that impacts a major life function can really make you feel more like a failure than a success. And so a clear message that we’re sending at PACER is that everyone has value, everyone has worth, everyone has significance.
Jeff Thompson:
And that reminds me of the letter that the Mental Health Youth Advisory Board wrote. And I read that, I read it two, three times and I was listening to it, but it really connected me with an individual behind this façade or mask that kind of society paints about when I heard that word.
Speaker 3:
I am one of many people in this world.
Speaker 4:
Born with a disability that cannot be seen.
Speaker 5:
I have Aspergers.
Jeff Thompson:
You know, I’m just an average person, I guess, that it really connected me with the individual behind all the mystique.
Speaker 3:
I love model trains, video games.
Speaker 7:
And World War I and II documentaries.
Speaker 8:
To my parents, I am exceptional.
Speaker 3:
To my siblings, I am annoying.
Speaker 5:
I do the best I can in school, and at home.
Speaker 7:
I hate chores, and like most teenagers would agree that school can be a drag.
Renelle Nelson:
Yeah, thanks for bringing that up. We have a Youth Advisory Board in mental health that meets once a month here at PACER Center. And they’re youth between the ages of 14 and 19, they’re typically in high school, sometimes we’ll let them come a little bit earlier if they’re feeling well enough, and capable of coming to our meetings. And we let them stay through their transition years in high school, so if they continue after their high school experience in special education on a transition plan, like a change of services through their school district, they can stay on the board.
Renelle Nelson:
But the purpose of this Youth Advisory Board is to decrease the stigma that teens experience when they have a mental health need.
Speaker 4:
I don’t deal with social events very well.
Speaker 3:
But I am dependable friend.
Speaker 5:
It is hard to be understood.
Speaker 3:
It’s hard to be understood.
Speaker 7:
Sometimes, we are just told to deal with it.
Speaker 9:
Sometimes I don’t think I’m any different from other teenagers.
Speaker 5:
We kind of all struggle to be understood.
Speaker 9:
But yeah, I struggle.
Speaker 3:
Emotionally and intellectually.
Renelle Nelson:
[crosstalk 00:32:05] But also to help them in that process, develop their own skills around self advocacy and leadership.
Speaker 3:
If only others could see I have so much to offer.
Speaker 5:
I would like to encourage kids of my generation.
Speaker 3:
Well really, everyone.
Speaker 8:
To be more kind to each other.
Speaker 9:
To be more kind to each other.
Speaker 3:
To be more kind to each other.
Speaker 8:
Think about how good it feels when someone comes to help you when you least expect it.
Speaker 3:
We are all trying to fit in.
Speaker 9:
We are all trying to fit in.
Speaker 5:
We are all trying to figure life out.
Speaker 7:
We are all trying to figure life out.
Renelle Nelson:
And so we do a kind of a wellness group to begin with where we talk about what’s often been referred to as the eight dimensions of wellness. Which include health relationships, taking good care of your body, eating well, sleeping well, finding support when you need it. Sometimes we even talk about medication management or the downsides of taking medication. But our focus really is on how can teens who have mental health needs stay well. And when you feel well, you obviously can do more. You feel better about what you’re doing, so even if you have struggles with a math test, if you’re not in a real depressed state, you’re like to be able to manage that much better than if you are in a very depressed state. Had some deprivation, and have been sleep deprived, or haven’t been eating well, or have unresolved peer relationships that you just can’t figure out. All those problems can be very common for teens.
Renelle Nelson:
For a teen with a mental health need, they could become very escalated quickly, and much bigger than they need to be. So we work with that, and then, like I said, we work with them on being able to tell their own story. We feel very strongly that, as we’ve already said, everyone has their own journey, and every journey needs to be honored, and supported. But we want our teens to be able to use their story to benefit other teens.
Renelle Nelson:
And so we work very hard with them on helping them acknowledge their experiences, good and bad, but also focusing on what they can do about it to help promote better services for youth with mental health needs. We work on helping them tell their stories, we align it sometimes with legislation that’s getting perhaps talked about at the state level. We bring them down to the capital to meet with our legislators, we offer them opportunities to do conferences. PACER holds a Mental Health and Learning Disability Symposium every August. This year it’s August 8th, it’s at the convention center. And our youth board does kind of a lunch bunch presentation, where they share their stories and offer tips and strategies on how to help support teenagers with mental health needs. They’ve done in-services in school districts, they’ve participated in other even national events.
Renelle Nelson:
So, and then they do volunteering. They’ve done pancake breakfasts around town, they even did a sleep out awareness night for mental health. We work with these youth to promote mental health and wellness for teenagers.
Jeff Thompson:
Awareness is very important.
Renelle Nelson:
Absolutely.
Jeff Thompson:
Renelle, I was on the website and I saw something about Disney Babble. I mean, Disney caught my attention right away, and then Babble. It’s like Disney Babble, what is Disney Babble?
Renelle Nelson:
So babble.com is Disney’s blog for parents of children and youth to get advice, information, and support from everything from mental health, to adoption, to parenting, and more. They asked us to contribute with a monthly blog specific to young children with disabilities and mental health needs. We write a monthly blog for them, and we’ve been doing this for several years. And we try during that blog to address things that probably are things that young parents are asking, or want to know about, but kind of don’t know where to get that information or support. So we’ve done blogs on does your young child have an anxiety disorder? We’ve done blogs on invisible disabilities, like autism and behavior … oppositional defiant disorder. We recently did a blog on is my child too young to be depressed?
Renelle Nelson:
So we try to give information through this very short blog, so that parents know that there’s a place to get that kind of support, and maybe some of the things they need to be asking about to answer some of those questions. So we never write a blog that doesn’t have a resource attached to it, or a place to get more information.
Jeff Thompson:
And there just seems so many different ways and not one way fits all for getting the information out.
Renelle Nelson:
Absolutely right. And because babble.com is followed by … has many members, including members who are international. We want to make sure that when those parents do follow up, if they do follow up with some of the resources we suggest, we are able to follow their needs and help track them and get them connected to the right resources.
Jeff Thompson:
That’s awesome.
Jeff Thompson:
Renelle, you mentioned the segue between … not the segue but the mental health, blindness, vision impairment, and all that, just because I’m visually impaired doesn’t mean that excludes anything else that was … it moves right to the top, that’s my scarlet letter.
Renelle Nelson:
Yep.
Jeff Thompson:
I’m the B, you know, the blind, and everyone has that. But that doesn’t exclude me from having anything else, and there’s lots of times when I was teaching that there was students with multiple disabilities, multiple disorders, and part of the focus was to focus on the blindness, but you couldn’t teach without realizing you had to deal with other disorders.
Renelle Nelson:
Absolutely. I think that there is research that there’s a lot of comorbidity with other disabilities, and anxiety in particular. Anxiety is the most diagnosed mental health disorder. And because of that, we need to be paying attention to not just the anxiety, but all of the things that impact the anxiety, or what perhaps even caused the anxiety to rise to the level of needing intervention and support.
Renelle Nelson:
So certainly having another disability is a high indicator that it might trigger a mental health need that needs intervention or support. I happen to have a young adult son who has developmental disabilities as a result of an illness he had when he was young, and lack of oxygen to his brain. And also had significant mental health needs that developed as a result of those unmet needs that he had related to just understanding his sensory needs, and his inability to understand the world around him. And so he became very anxious, and very compulsive, and very behavioral.
Renelle Nelson:
So, having a disability doesn’t define you, but it isn’t also often just a singular need, there are many other things that can come into play that need to be addressed in order for you to have success managing all of your needs.
Jeff Thompson:
Yeah. When the visually impaired are transitioning from high school to college to the workplace, one of the things is like a job interview, do you disclose your disability? All these things come in, the anxieties come up, and because not everybody gets hired and they get turned down, then depression comes in, so they develop, like you said, a dulled onset, or sometimes mental health, how to deal with, how to cope, how to all these things come in, and then plus the blindness, and it just seems like a downward spiral.
Renelle Nelson:
It is a challenge, and it’s a struggle, and it’s a question we get a lot, we get asked a lot, how much should I disclose? Young adults with a vision impairment or blindness who are fully capable of holding a job and being trained to do a good job and would be good workers often, because of their impairment, may not be considered in the right way. And so it’s something we struggle with, and I think our society struggles with it, especially with mental health and the mistaken beliefs that we have, we talked about those misconceptions, but the mistaken belief we have that if you have a mental illness, you are likely to be a violent person, or an unsafe person. And especially right now, with the difficulties and the traumatic experiences that schools have experienced around schools safety, we really get off onto the wrong line of thinking. We really need to go back to where we started, and think about we can put early interventions and supports, and measures in place to help address these emerging needs, rather than wait until these emerging needs become so detrimental that they become unsafe.
Jeff Thompson:
Renelle, what advice would you have for a student that is transitioning from high school to college to the workplace?
Renelle Nelson:
We have lots of information, and in fact we have a project here at PACER, our National Transition Center, and a Workforce Development Project to help support young adults who are moving from high school or college into the work force, so they understand how to disclose, when to disclose, if I need to disclose, or how to handle what I need as far as accommodations. Sometimes the mistake is that we assume that people know we need accommodations related to work that we may be asked to do, because we’ve disclosed a disability, but that may not, in fact, be true. It’s helpful to be able to know how to approach that professionally, and with an open mind.
Renelle Nelson:
There is no guarantee that people aren’t biased in their decisions. Everything we do has some bias to it, including the assessments we use to even identify or diagnosis. So, knowing that that exists, we need to just be aware, and to make sure that we are offering our best foot forward, and being positive, and capable, and convincing. Because it’s been my experience in raising a young man with disabilities who is now in a competitive situation in the workforce, who has been able to work with his supervisors on getting the accommodations he needs, so that he can stay competitive and successful in his job. It’s important to know that those things can happen. And you can see the fruits of your labor, and like we said earlier, feel the significance in life because you know that you’ve been able to manage what you have successfully, and have been able to contribute to the community at large.
Renelle Nelson:
So, I think PACER has all those resources and supports for you. We can’t help people work harder, but we can help them work smarter.
Jeff Thompson:
And there are so many resources here going through the website, can you give some information, where people can get ahold of the PACER Center?
Renelle Nelson:
Sure. So we’re Minnesota’s Parenting Training and Information Center, but we also have lots of information and resources for the United States and internationally. To call us at PACER Center, you can call us at 952-838-9000, and between the hours of 9:00 and 5:00 you will hear a real live person answer the phone, and they’ll have a conversation with you, which is a lovely thing to have, because in this day and age we sometimes get automated calls, and callbacks, and we do not do that. So I want to assure you that you’ll get a real live person on the other line.
Renelle Nelson:
If you call on hours that aren’t between 9:00 and 5:00, you’ll be able to leave of course a message and we’ll get back to your right away. You can also go onto our website, which is www.pacer.org, P-A-C-E-R.org. And there’s lots of information on that website as well around information for support, asking questions, we have different projects with icons you can click on to get more specific.
Renelle Nelson:
But in any event, if you have a specific, unique, individualized question, be sure to call and ask for a PACER advocate, because you will get a call back. We try to turn our calls around within 24 to 48 hours, and we will try multiple times to reach you, and we will try to pair you with an advocate that’s specific to the information you leave when you call in, so that you can get that kind of support that you need right away.
Jeff Thompson:
Renelle, I want to thank you very much for taking the time. As I said before, this is great information and I’m sure the listeners will love it. Thank you very much.
Renelle Nelson:
Thank you, I appreciate the time.
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.
Jeff Thompson:
And a big thank you goes out to Chee Chau [for the beautiful music. You can find Chee Chau on Twitter @LCheeChau.
Jeff Thompson:
For more podcasts with the blindness perspective, check us out on the web at www.blindabilities.com. On Twitter @BlindAbilities, and download the free Blind Abilities app from the app store, and on Google Play. That’s two words, Blind Abilities. You can also enable the Blind Abilities Skill on your Amazon device. Just say, “Enable Blind Abilities”.
Jeff Thompson:
And from PACER Center, State Services for the Blind, and Blind Abilities, thanks for listening. We hope you enjoyed, and 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 with 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 e-mail at:
info@blindabilities.com
Thanks for listening.