The Journey of Families Struggling With Autism

For families dealing with autism, they journey is often filled with tears, fear, and bone-weary days and nights.  Caregivers come from every walk of life, and while the circumstances may be different for all of us, we share a common bond of heartbreak and stress.  Together, however, we can strengthen and empower each other.

On Sunday’s show, one such caregiver and advocate joined us to share her family’s personal story …and what she is helping do for not only her family, but for other families, as well.

Transcript of the Show

Live from Music Row, it is Caregivers With Hope—the nation’s number one show for caregivers here on 1510 WLAC. I am Peter Rosenberger bringing thirty years of experience.  That’s not one year, not two years. Not one decade, not two decades—but three decades of putting myself between someone who suffers—and even worse disaster, so I understand the needs of caregivers out there and it is a crushing thing to do this.

How do you stay healthy?
How do you help the caregiver?
What does that look like?

That’s what this show is all about.

We’re glad to have you with us, it is a real treat. If you want to be on the show the number is 800-688-9522.  If you’re listening on Iheart.com across the country 800-688-9522.

You know I don’t do the show alone always have “himself” in the booth with us is the Sultan of Sound, the Grand Master of Groove, the Fuhrer of Funk, The Count of Mighty Disco, and a guy who is wearing a really sporty ankle bracelet provided by state government …John Butler every one!

[John’s sweeping intro music]

[John] Have you ever spent a night in lock-up?

[Peter] (breaking up laughing) I can’t get through these intros of you …

[Peter] “Hey listen up, we’re glad to have you with us.  We have great lineup today.  Are you well?

[John] I am as a matter of fact.

[Peter] I didn’t see the “Count Cycle!”

[John] No, you did not. I’m not interested in in getting any extra exercise today because I mowed my yard this morning for the first time this year.

[Peter] What is it Jeff’s Foxworthy says, “If you mow your lawn and find more than three cars!}

Listen up, I’ve gotta fabulous show today.  This is autism awareness month and in light of that I have invited somebody come on the show that I’m very excited about: Babs Tierno is with us and she is executive director of Autism TN, and brings some real heavy-weight understanding to this issue that’s affecting so many. 1 in 68 children are diagnosed with autism somewhere on the spectrum, and that’s up I think from just less than thirty years ago, 1 in 88.

It’s a crushing issue affecting a lot of families and so we’re going to spend a lot of time today talking about this.

A Conversation With Babs Tierno

So, Babs …you with us?

[Babs] I am. Thanks for having me here!

[Peter] What a treat to have you on the show and to talk about this issue!  This is not something you fell into, this is something that is very personal to you, and can we just jump right into that and let you tell folks your story?

[Babs] Sure.  I have experience in the nonprofit world and then I became a parent a little over six years ago. He was pretty unique from birth, and we worked our way up to an autism diagnosis.  He was diagnosed at about 2 …with autism …and it’s been a journey ever since.  So that’s our story, and we also have a one-year-old now …and it looks highly likely he is on the spectrum as well, but we won’t know for a while.

[Peter] Well, how long does it normally take to be able to have to determine that?

[Babs] Well so, Autism is a behavioral diagnosis. There’s no test for it, and there’s no blood test.  So it’s just a matter of observing the child over a period of time, doing some developmental testing, and seeing how they are progressing hitting milestones.  Usually, it’s between 18-36 months, and then the pediatrician can make a reliable diagnosis as to whether or not the child has autism.

Autism is a behavioral diagnosis. There’s no test for it, and there’s no blood test.

[Peter] What are some of the signs that would cause folks to even start asking the question?

[Babs] Yeah, and so early on, you’re going to see in an infant, they’re not going to gesture when they want something. They’re not going to point to something, they’re not gonna …when you turn your head to look at something typically another person would turn to see what you’re looking at …you’re not going to see that infants with autism. There’s delayed speech or no speech at all.  There’s bizarre speech …echolaliawhich is the repeating of sounds and phrases you hear …or inverting pronoun. So, if you said, “Do you want to go outside or go to your room?” They answer,  “Go to Your Room”

They don’t change the pronoun to “…go to my room.”

So some interesting speech and communication deficits.

[Peter] We’re talking with Babs Tierno. She is the executive director for Autism Tennessee, and this is national autism awareness month.  You guys have a pretty big event coming up.

[Babs] We do!

[Peter] It’s next weekend isn’t it?

[Babs] It is …yeah, we’re planning for it.

[Peter] Laughing …Are you ready?

[Babs] Don’t know if I’m ready but I’m as ready as I’m going to be.

[Peter] Tell me about this event that’s coming up

[Babs] It’s “Pieces of Hope.”  It’s an annual gala that we do. It’s on April 23rd in Franklin … and it is a good time for a great cause. Our entire mission at Autism Tennessee it to celebrate autism.  We want to celebrate what autism can do … and there’s a lot of things that autism struggles to do … or make progress in a difficult and timely manner …but we want to celebrate what autism can do at every opportunity.  And so, that’s what this night is …it’s a night of silent auction, a live auction …and great eighties band …should be a fun time dancing, an open bar, dinner by Taziki’s  …a great time.

[Peter] Well, first off, about dinner by Taziki’s is wonderful …because I like Taziki’s …and “…a great 80’s band …’ Will there be eighties hair involved in this?

[Babs] There will!”  So the 80’s band is an interactive band. They actually direct the part.

[Peter] I’m sorry to hear that Babs!”

[All laughing]

[John] You can see where or both Peter and I perked up immediately when he said that

[Peter] I survived eighties … but a you know you were you were just a child during the eighties

[Babs] I was just a child in the 80’s!”

[Peter] I remember it with clarity. Whew …I can’t believe people are nostalgic for the eighties.  Well that that is exciting that you guys are going to do this.  We’re talking with Babs Tierno from autism Tennessee here … this is a subject that is near and dear to a lot of hearts it is a tough thing for families.  If you wanna be on the show if you go to questions please feel free to call in number is 800 688 -9522 .  Maybe you have a family member who’s going through some things like this and you don’t know what to say you don’t know how to talk to them you’re not sure exactly what’s going on … this is the time to do it …so please free to call 800 688 -9522

Babs I got a couple questions for you.

[Babs] Alright?

[Peter] First off, if somebody wants to go and find out about this event that you guys are having, is the best place to go is just to the website?

[Babs] Yea, Autismtn.org  and then the first thing you’ll see on the page is information about the event.

[Peter] Autismtn.org like in Tennessee autismtn.org and you’ll see the stuff about the event that’s coming up this week.

Alright. This is very personal to you, and I want to start just jumping into some questions for here so let’s just start with the first one: What are some of the biggest challenges facing parents of children with autism

[Babs] Isolation.  That’s our biggest barrier of this.  You can’t predict the environment when you leave your house …and so simple thing like a grocery store …when you have to take in a child is autism …and my child …and even adults with autism …you don’t know what those triggers are going to be that will set that person off. The perception and the way that you feel being a caregiver of an individual with autism …it’s an invisible diagnosis. When you look at that person, they look typical, and so we have the sense of I need protect and care for my person with autism …I need to protect and care for myself, and I need to, for whatever reason, explain to everyone around me why this is happening.  And that sense of guilt or perception …is just added stress that families with autism undergo constantly.

[Peter] So, you isolate yourself. The disease itself is isolating to the one who’s been diagnosed with this …because they’re isolated …and then the family becomes isolated …I guess out of concern …embarrassment all types of feelings that go on out the public.  Do most people seem to be understanding it when your situation when you …when your son …I assume you had a situation where your son is had an episode somewhere out in public

[Babs] Just yesterday, actually (laughing)!

[Peter] So it’s fresh in your mind!

[Babs] It is fresh in my mind. I will say yesterday, was the the first time in his life and I wish he had a big t-shirt, or that I had on a big t-shirt or big hat that said,

“Don’t judge me it’s autism!”

It is fresh in my mind. I will say yesterday, was the the first time in his life and I wish he had a big t-shirt, or that I had on a big t-shirt or big hat that said,

“Don’t judge me it’s autism!”

I mean it’s just … it was so …I just …my heart broke for him …and then my heart broke for him …because I was concerned about everyone else instead of how to make it better for him …and … I just couldn’t be an appropriate caregiver for him because I was consumed with the situation in its entirety.  And so, he …haircut haircuts are typically very difficult for individuals with autism.  I mean, if you think about it why don’t we let strangers come at us with scissors close to our face. I mean for you and I, we’ll trust that they’re not going to hurt us. But for individuals with autism that has those social deficits …why would I want that person come near me with …

[Peter] Well …in my case with my hair … I have several legal waivers that are involved with people …

[John] I was going to say, ‘Your hair is insured…”

[All Laughing]

[Peter] You know with great hair comes great responsibility …

Well no I and I can understand it and I think the thing is Babs you tell me that my heart breaks for you. Because that put you in such a horrific circumstance. This is your son, you’re frustrated, you’re brokenhearted, you’re trying to somehow make sure that the people around don’t react poorly it …and it’s an uncontrollable event …that you want to wield control in …but you can’t and then you’re just heartbroken.

[Babs[You’re Right

[Peter] I imagine they’re just a lot of tears on a regular basis.

[Babs] Yes. Mine, his …my husband’s …there’s a lot of tears.

[Peter] This is something that  is common across the board here with family members is that … My situation as a caregiver is not with autism, my situation much different …so I’m always moved to hear the stories of other caregivers who are you know we’re battling some the same principles because we all deal with isolation.  Isolation is a common thread I talk a lot about on the show, because the nature of disability in general isolates us from our community. But you guys it seems like when your dealing with autism, have an extra layer of isolation.

And my heart breaks for you … and really it …. and I’m I so grateful that you’re willing to come on the show just open up your family’s life and tell your story a little bit …so people can see this and realize that, “Okay, you know what? When we’re out in a public situation and somebody has a child that is acting out, let’s just not be so quick to jump down the throat of the parent

…or somehow stare with disapproving looks or whatever. We have no idea the drama that’s going on … and we can try to be a little bit more kind and helpful and understanding.

Hey listen, we’re gonna take a quick break here.  We’re talking with Babs Tierno, the executive director of autism Tennessee this is national autism month so many people that are dealing with this, and we wanted to spend some time to talk about this is from the caregiver standpoint.  We so grateful that she’s here.  800 688-9522 if you want to be on the show.  This is Peter Roseberger, don’t go away we’ll be right back.

Welcome back to the show for caregivers about caregivers hosted by a caregiver. I am Peter Rosenberger … bringing you thirty years of experience to help you stay strong as a caregiver. They’re 65+ million of us. We’re putting ourselves between a vulnerable loved one …and even worse disaster.  How do you stay healthy in that thing? What does it look like to help a caregiver?

That’s what the show is all about …if you were to be on the show 800 688-9522.

We’re talking with Babs Tierno she is executive director of autism Tennessee

that’s autismTN.org .  This is national autism awareness month, and she’s a mother of two. She has one son who’s already been diagnosed with autism, and a second looks like maybe as well …so she’s coming at this thing from a great deal of understanding …as running the organization, and then as a mom.

And we just talked about in the last segment that one of the greatest challenges facing a parent of a child with autism is the isolation.  Autism in itself is an isolating diagnosis. I mean that what this child is dealing with isolates them from everyone …and then you have the added isolation of the family that doesn’t want to go out in public because you never know what’s gonna cause an episode.  She was just talking about getting a haircut. You know that’s a frightening thing, and there are lots of tears involved.

So, Babs I really appreciate you being here with us and taking the time on Sunday afternoon here to do this …but this is such an important issue that’s affecting so many people.

[Babs] It is shocking on how many people are affected.

[Peter] Well, I was looking at some of the numbers  … back thirty years ago was one in 88 children …now  it’s one in 68 children.  Do you know what’s going on with this? Do you have any thoughts on why this is becoming much more prevalent or what’s going on with this?

[Babs] Well, I don’t really know that it is becoming more prevalent. I think it’s better diagnosed.  I think that we were “…the shot in the dark” …were guessing …with a lot of younger children back then.

We didn’t have a lot of research back then.  Some of them got an ADHD diagnosis, but that was probably an autism diagnosis.  Some of them got a bi-polar diagnosis …but that was probably really autism. So, we just have better science, better research, better doctors …with more information. So, I truly don’t believe that there is this rise in children affected by autism I think we do a better job.

[Peter] That is … I love that.  That is a great response.  Let me ask you something about the school situation.  Do you see some even just a little bit of time that you can do this as a parent …do you see continued strides in the public school situation being able to handle the needs of children with autism?

[Babs] You know I’m new to it.  My son’s a kindergartener right now, and I think that the teachers who teach because they love children are incredible … like my son’s teacher’s absolutely incredible. She is so proactive when it comes to him, but I will say from an administrative standpoint, it’s a burden … it’s a cost burden to the school system to educate children like ours.  They require more. They require more personnel. When it comes down to the dollars and cents of it for administrators, I think they’re really reactive.  They’d rather wait and see with minimal effort what’s going to happen and then you know work into what’s actually required for our children to succeed. And I think it takes a few years to really get a school system to trust you as a parent and to really get to know your child  …so I’m hopeful that our situation is going to be keep getting better and better.

[Peter] Are you all involved in legislative type efforts that autism Tennessee area

[Babs] We definitely are.

[Peter]Do you see a fairly good …I mean this is a loaded question here … but that’s alright {heavy southern drawl} just is just ‘twixt us …. do you see good reception from state and local officials on this?

 

[Babs] Oh yes …and the problem is, they don’t know anything about it.  And as soon as you hear and you learn  …this is what Autism is …this is what it looks like …and this is what it takes for Autism to be successful … you can’t deny any of any intervention that is required for the child to be successful and all the research that’s stacking up on early intervention …and one on one situation {unclear} all of the science that is being brought to the table. Our legislators and our department of education is really responsive and they’re listening for sure.  It’s just a matter of you know, how do we pay for it, or how we you know get it into the school system in a functional way for these children.

[Peter] Well, that brings me to another question. What happens after the child turns eighteen?

[Babs] So, if your child qualifies for what we call an IEP …individual education plan …that they can actually remain until the age of 21 which is great that’s something our education system is really doing to help these kids into adulthood …becoming more independent over a period of time …versus “you’re 18; we’re done with you!”

So that’s something that they’re really doing a good job with …it’s not eighteen that we’re looking at …for some of these children that’s 21 … so that’s a real positive thing.  But the services decline greatly  …the number of service providers that work with adults diagnosed with autism …there’s not very many of them.  So we have been focusing a lot of our efforts Autism TN on unifying and the network of resources for adults so that we can be more proactive and less reactive

[Peter}Well, and I want to talk about that a little bit more in the next segment.  We’re at the bottom of the hour  …you can you stick around with us right?

[Babs] Sure

[Peter] Thank you so much  …we’re talking with Babs Tierno of Autism Tennessee If you want to be on the show, 800 688-9522. Maybe you know of someone who is dealing with this right now and they’re just new into this.  This is a great show for them to tune into …let people know. This is the information that we want to put out there.

You know I’ve been a caregiver for thirty years. And there are so many different kinds of caregivers.  In my case, I deal with a wife with severe trauma and physical disabilities and so forth. But there are lots of different scenarios out there, and each caregiver comes to the table with a lot of heartache. That’s what the show is about: “How do you help the caregiver?” And we caregivers, we struggle with a lot of the same things no matter what the person we love is struggling with …we caregivers have a very specific set of needs and things that we can address and that’s what the show is all about.  We’ll be right back …don’t go away this is Peter Rosenberger. I’m so glad you’re with us … thank you so much … will be right back.

Welcome back to the show for caregivers about caregivers hosted by a caregiver …this is caregivers with hope. And that’s Jackson Browne Running on Empty.”  I picked that out just for caregivers today.

Sometimes we feel like we are just running on empty.

We’re talking with Babs Tierno today she is the executive director of autism Tennessee here in middle Tennessee, and of she’s also a parent of one child who’s been diagnosed with autism and looks like a second may be as well.

So she understands that what she speaketh of!  And we’re glad to have you with us Babs.  If you want to be on the show 800 688-9522.  Ever feel like you’re running on empty, Babs?

[Babs] um Yes …all the time!

[Peter]Only on days that end with “Y.”

OK, let me ask you couple questions in this segment here and these are kind of hard hitting questions …but this is where people live here.  A lot of times with caregivers. I found a lot of people particularly those caring for aging parents …they kind of hold their breath and try to get through it and to that parent goes on and dies …and then they can get on with their life. That’s the mentality lot ahead let people have with their parents.

But when you have a special needs child enough learned a slot for my brother and his wife who have a twenty-seven-year old daughter was Cerebral Palsy …and she has severe of cognitive issues and so forth … I mean she’s like taking care of a giant baby …and she’s twenty-seven.

When you have a child with special needs, that’s a life sentence.

I mean that’s not going to go away.  Your whole life now is changed by this.  This is your life. There’s no waiting to get through this and get on with your life…this is your life!

[Babs] It’s the opposite:  We want them to succeed …we don’t want them to go anywhere.

[Peter] Well, you can’t just deal with that with one phone call that’s a

that’s a process to deal with? How did you deal with this, when you when you guys realized what was going on? I mean I know there are tears and all that kind of stuff …Where do you turn to? Who did you talk to? Who do you sit down with and deal with the emotional trauma of knowing that this is what’s in store for you and this is how it’s going to be?

[Babs] Well, it’s cyclical. So you go through that grief process immediately when you get the diagnosis, and then you go to Dr. Google …and you become an expert …and then you go through cycles of you know what you thought it was going to look like …and what it does look like.  And I’m I don’t know that I’m through …it in order to give you any answer.   I think it’s a constant battle at every milestone that you’re expected to celebrate at a certain age or that where I’ve you see other people’s children celebrating …you go through it again and …I don’t know that I’m through in order to say how I got through it.

[Peter] Well, I don’t know that anybody it … For those of us in the long term realm of caregiving I think that it’s a prolonged event of grief.

[Babs] It’s a cycle of grief

[Peter] It’s just part of it. I deal with that when I’ve talked about it with my brother and my sister in law about their daughter.  He’s never going to be able to walk down the aisle …that kind of thing.  Prom …those are hard things.

We would be well served as a society to be sensitive to those things for people dealing with this kind of issues. It may seem like a small thing …but it’s not. These are big things; playing baseball and all those kind of things we take for granted and so I recommend support groups to a lot to folks because I think that it you gain so much strength by hearing other people’s journeys. Are there good support groups that that or that you guys can connect people to …in this world [of autism]?

[Babs] Yes! So part of what we do an Autism Tennessee is we have a pulse on every community and middle TN about what’s going on with their autism population and stuff.  When someone calls our hotline …we have a hotline where an actual parent going through this that talks to people and tells them there is a support group in your area … there’s an online group that might be a good fit for you.  We can really tailor what things that the person had calling and what’s available to them locally.

[Peter] Is that the hotline twenty-four seven?

[Babs] No, it’s not a 24/7, she works from 10-3 Monday through Thurs.  But you can leave a message and she will call you back …or send an email or message through our Facebook page. She’s a “me-too!”  She’s a person who’s literally been through what you’re going through and came out on the other side. So it’s great to talk to someone who coming at it from that perspective.

[Peter] Yeah, because it’s it it’s not theory. And that is wonderful

So if somebody wanted access this to do they just called the go to the website and see all that there …or what?

[Babs] There is an 800 number, but I don’t have the memorized right now …but our 615 385-2077 and then her extension is #1.  And you can just leave her a voicemail, she’ll call you back.  It’s a pretty incredible thing that we provide for just anybody.  You know it can just be a teacher who says, “I don’t know how to handle this kid,” or a grandma that I just says, “I just don’t get it …my daughter keeps telling me this is what we’re going through…”  So she can be that “me-too” for everyone who’s going through this either new or has been it for ten years and just needs to talk … we provide that.

[Peter] 615 385-2077 and then her extension is #1.  If you want that just to have somebody who gets it …I mean that they’re doing I mean that that is a tremendous for you guys to have.

Go back to what you said, “one of the biggest challenges we face is isolation.”

In isolation we make bad decisions.  Every caregiver struggles with isolation on some level. and that’s when we make bad decisions. So glad that you guys are trying to push out into that isolation for folks, and give them a resource to be able to do this.

Let me ask you, I’m going to go from preaching to meddling here.

[John] Oh man!

[All Laughing]

[Peter] One of the big things that I push very hard is to is to push back against that isolation—get involved in church and community and so forth, and sadly a lot of churches struggle in this area …and don’t exactly make the family feel welcome.   They don’t know exactly what to do, and you know that’s a hard thing …that is a hard thing… because you would think of all places that would be the place to go …

If you could say to pastors and church leaders that are listening right now one thing, what would you say …and it doesn’t have to be theological …just let’s just be practical.

[Babs] It is one thing that they I could say that I would be able to learn more about what autism looks like, because it looks like every other kid. I mean what it looks like.

And then once you know what it looks like, and how people with autism perceive their environment, you intuitively can make change. You can turn the music down in the foyer.  You can make the lights less bright.  You can have your caregiver be a little more patient and kind …and using calm words.

You just change everything. When you realize I’m talking to an individual with autism, you change how you interact with them. Your patience goes up …your demands go down.

[Peter] That’s just beautiful. Education is empowerment. I mean that’s how we’re going to do this, We’ve got to learn about this thing and not freak out about it.  We don’t have to get real weird about it.  I remember one time, you’ll laugh at this, Babs … Gracie and I had nursery duty at our church and we sat int.  They have nursery workers that are professional nursery workers but people in the church would volunteer to go, and Gracie and I were on nursery duty for like the toddlers or 3-4 year olds.  My wife has two prosthetic legs, and she never wears skin covering on them … so they look kind of like the Terminator legs …so that’s what I call them.

And the kids were just fascinated by them, so she took one of them off, and passed it around to the kids and let them just touch it …and it was you know it was really endearing to see this, because I think that’s how you do it …You just learn, and you learn from each other. And you recognize, okay we’re dealing with this.  This is what it looks like. It’s not scary. It’s kind of is what it is …and here’s how we deal with it.  This is something I’m on a real mission to do …to help pastors and church leaders know what to do to make people feel welcome. And the last thing I would want for anyone with a child with autism is if the family works up the courage to come to our church …they wouldn’t feel ostracized …they wouldn’t feel like everybody is starting.  They could just come on in it …” We don’t care [about the disruptions, etc.] it’s alright! Come on in!”

And my brother has told me that their church situation was so endearing to them because Kelsey would act out sometimes Kelsey would …you know just sometimes just bodily things happen you know when you deal with somebody with a lot of disabilities and so forth.  And everybody there just acts like it’s no big deal.  “It’s okay, It’s alright.”  You know, some people can be mortified by that, but when you see people loving people and caring for them in it …recognizing this …and “we’re going to help this family through this.”  That’s what I’m on a mission to do.  That is the church being the church, and so thank you for those good words of just learning and educating people about it this is how you do it.

And practical things like the lights! You know who thinks like that?

You know, I remember …Stairs! How long did it take us to figure out that stairs could be hard for people in wheelchairs?  Build a ramp! You know, it’s just practical stuff …so thank you for that.

Listen, we’re going to take another quick break here.  We’re talking with Babs Tierno. She is executive director of Autism Tennessee autismtn.org

if you want more information on that …like she said, they have a number there you can call. You can talk to someone who’s really going through this.

They understated.  This is their life.  They have somebody there to answer your questions and to talk you through it …even if you just have one those kind of meltdowns you need to talk to someone about it.  If you want to be on the show 800 688-9522 this is Peter Rosenberger, don’t go away we’ll be right back …there’s more to come.

HOPE FOR THE CAREGIVER

[Peter] Welcome back to the show for caregivers about caregivers hosted by a caregiver. I am Peter Rosenberg bringing you 30 years of experience to help you stay strong as you take care of someone who is vulnerable.

Hey listen, we’re talking with Babs Tierno here of Autism Tennessee.  It’s been a great time with her we’ll get to that just a moment.  If you would like to be on the show 800-688-9525.

Back to Babs, are you still with us?

[Babs] I am

[Peter] Hey thanks for not leaving Babs. I appreciate that very much. Let me ask you a quick question.  We’re going to get into the lightening round here just a minute because we’re going to winding up here but what surprised you about autism?  When you when you guys went into this as your family you know of course we’ve heard about autism for years and I think that movies that feature characters so for like Rainman and so forth, but when it came to your family, what surprised you about it?

[Babs] Well, with my family, I think I had a more profound epiphany outside of my family.  In my role at Autism Tennessee, I’ve gotten to meet several kids who are non-verbal and for me, until about last year nonverbal meant you didn’t understand and that’s not at all what’s happening. Just because you can’t talk doesn’t mean you don’t get it.   Your brain works perfectly fine it’s just not wired for speech. That’s the thing that stuck with me the most about Autism and that’s just been shocking to me. Even having a child with autism he’s verbal so it never occurred to me that just because you can’t talk doesn’t mean you don’t totally understand what’s happening around you.

[Peter] I did that I guess I didn’t think about that myself and so I think that is a that that’s when those refreshing moments to hear that people realize that you can’t talk but the mind is still working and again that feeds that whole isolation thing that is autism and the communication thing.  What about non-verbal communication if they can’t speak… what does that look like?

[Babs] Non-verbal communication is difficult for many individuals with autism. My son is verbal but his communication skills non-verbally are confusing. If you shook your head no, he will look at you and say “Use your words, I don’t know what that means.” So he can’t decipher nonverbal communication by just shaking your head or shrugging your shoulders. He’ll say “Is that your mad face or is that your happy face?”  He can’t read those.  So even for children who are very verbal they struggle with nonverbal communication. How we communicate with our body is something that individuals with autism really struggle and so I don’t know that we know other than using alternate forms of communication how non-verbal children are interpreting our body language and that’s interesting I don’t know that I’ve ever really delved into that.

[Peter] Alright well listen, in the little bit of time left I’ve got to go to the lightning round here with you, ready?

This is this is the lightning round of things gripping caregivers these are parents at now dealing with this, siblings extended family members whatever, but this is the world now that that you’re in with autism and I want to hit you up with a couple of these topics number one:  Fear.

First thing comes to your mind when you deal with fear.  What and how does that how does that group of a person that is now have this diagnosis in their family?

[Babs] Fear for autism families probably looks different in that fifty percent of children diagnosed with autism wonders if they stay safe … and drowning in any cause of death happens very often when children wander away, so elopement is a huge fear for our family …and just being safe and being environment that can keep your child safe.

[Peter] So you have to stay in a heightened state of vigilance all the time?

[Babs] Correct, yes.

[Peter] And that is where my heart breaks for you.

[Babs]  Vigilance and risk management …constant inspecting your environment.

[Peter] Well I don’t know that, you know John …you know, I haven’t told you this yet …but my friend Jay Wasack, I call him, “Inspector Gadget …” he and I have been talking a lot about this particular subject forthis kind of event to

[John] Oh …that’s perfect!

[Peter] …to help us use tech for this absolutely and to wire the home to giveparents a little bit more added vigilance through tech … so they can get somesleep you know, because this is elopement is a …I think  …what is a stat I heard that of the deathsthat occur when a child with autism elopes …ninety percent of them are in water?

[Babs] That’s correct.

[Peter] So okay so fear you’re dealing withfear.  “Guilt.”

[Babs] Yeah, guilt  …and with the genetic issue, I would be guilt increasesoften for parents because there’s now some evidence that says that it’s agenetic disorder. A lot of the issues we see run through family lines …and sothe guilt you feel ”Did I cause this?” You know, “how could I have preventedthis?  or [to deal with guilt] just ownyour piece of the pie

[Peter] Resentment

[Babs] That kind of goes with the guilt.  If it’s not you, and you find that componentin your partner’s family tree … you do go through some resentment … “You couldhave prevented this.”  Although youcouldn’t have, I’ve seen that resentment being something that married couplesgo through with their parents.

[Peter] then the last one on this is loss ofidentity

[Babs] Wow.

[Peter] I know I’m hitting you hard here Babs.

[John] That’s the big one we talk about. Wetalk about that a lot!

[Peter] We talk about this a lot for caregiversbecause we get lost in someone else’s story.

[Babs] That’s right

[Peter]  …and it’s so easy to do that.  I know …listen I have been lost in my wife story …and I can’t tell you how many peoplehave asked about her over the years.  Imean I just couldn’t count it.  But I cantell you the ones that ask about me.

[Babs] I was thinking like …the number of people who …I have a small circle of about five people than I can count on them to say, “How are you?”

And they don’t accept “fine” or “great” as answer …because they know it’s a lie.

And so having that group of people who know full and well that your life is not fine…and you’re life is not great …and wanting to delve into it … I think that probably have about five people in my life who are concerned about me.

[Peter] Well, and you have to cultivate that.  That’s not something that happens by accident.You cultivate those kind of relationships and they’re work. There is not amagic bullet for this. This is just work, but it’s not something that’simpossible to do. You can have good healthy relationships.

That’s what this show is all about: helping ustake healthy steps as caregivers.  Andit’s a comprehensive thing. We didn’t even get into all the financial stuff andall these things …and I want to have you back on the show.

But I want to … we’ve only got like a minuteand a half.  John …we’ve got about aminute and half?

[John] I’ve already played the legal ID and we’reoff the air.

[All laughing]

[Peter] John, he shut us down already!!

We’ve got just a little bit of time left, what is one thing that you would like to say to families who are just now stepping into this world?

[Babs] “Me –Too!”

That’s what I needed to hear whenever we first got our diagnosis. “You are not alone …there’s so many of us out there!”

That’s what I needed to hear whenever we first got our diagnosis. “You are not alone …there’s so many of us out there!”

And if you need a “me-too” I can be that “me-too”for you.

Because I need a “me-too!” I needed someone to look at me and NOT say “I understand, NOT that I’ve been there, but  rather say: ME-Too!”

“I feel everything you feel!”

“I hope everything you hope!  And that goes for me too!”

[Peter] “Me Too!”  Folks, that is what we’re all about at Caregivers With Hope.  you can see more caregiverswithhope.com

Me-Too.

You are not alone.

You know I love that in scripture says, “Yea,though we walk through the valley of the shadow of death, I will fear no evilfor Thou art with me.” We’re not alone.

And Babs Tierno from autism Tennessee you havejust …what a privilege you’ve given us today to walk with you through this alittle bit and share your own heart with us.

For more information, go to www.AustismTN.org or write this number down:

(615)385-2077

These people are doing amazing work, and they are there for you.   Please please please go check them out.

Babs, you’re going to have to come back!

[Babs] I’lldo it!

[Peter] Alright, listen, I want you know how much I appreciate you coming on.

Thank you all for listening every Sunday afternoon. This is what we’re about.

CaregiversWith Hope.  We want to strengthen family caregivers.

We’ll see you next week.

Peter SpeakingAbout Peter Rosenberger

A thirty-year caregiver for his wife, Gracie, who lives with severe disabilities, Peter Rosenberger understands the journey of a caregiver as few do.  His experience led to him to author four books including Hope for the Caregiver, and 7 Caregiver Landmines and How You Can Avoid Them.  

Peter Rosenberger’s radio show for family caregivers airs each Sunday at 3PM CDT on Newsradio 1510 WLAC.  In addition, the show is also syndicated through the Truth Network.

Peter recently earned a 2nd Dan (degree) black-belt in Hapkido.  Furthermore, Peter is also an accomplished pianist.  He recently release his new CD, Songs for the Caregiver.  

Peter and Gracie live in Nashville, TN, where he also serves and the president and co-founder of Standing With Hope.

Discussing the vast problem for caregivers

Caregiver “Identity Theft”

Peter and Gracie Rosenberger’s song, “I CAN ONLY HOLD YOU NOW!”

Jeff Foxworthy Calls The Show

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