Latest / Voices for Voices® / How Autism Changed Our Family Forever | Episode 120

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How Autism Changed Our Family Forever | Episode 120 · Voices for Voices®

• 0:01
  Speaker 1: Welcome to the Voices for Voices TV show and podcast.
• 0:04
  Speaker 1: I am your host, justin Alhaze, founder and executive director of Voices for Voices.
• 0:11
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• 0:40
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• 0:42
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• 0:43
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• 4:40
  Speaker 1: Okay, so, getting into today's episode, we are joined, as always, by a special guest.
• 4:47
  Speaker 1: This, this guest, happens to be, on a personal level, my best friend, somebody I can talk to about anything.
• 4:58
  Speaker 1: We kind of have grown from times at our undergrad at Youngstown State University and since then you know the different professional and moves we have made career-wise and then, as well as you know personal, personal experiences that we're going through as individuals, as family members and and so, joining us from somewhere near Columbus Ohio, we have Dave Kegels.
• 5:27
  Speaker 1: Dave, thanks for joining us today thanks for having me, justin yeah, you've been glad to be able to get this episode put together and having the TV studio layout and to reach many people.
• 5:43
  Speaker 1: So, for those who don't know, we're going to keep things a little bit general so we're not going to be naming names for some of these content for respect for personal and confidentiality.
• 5:59
  Speaker 1: But Dave and his wife, erin, they have a child that is autistic and so that brings different, maybe challenges and hurdles that well, I guess there's no handbook to be how to be a parent but definitely, with having been on the autism spectrum, there's very little information even further on that.
• 6:37
  Speaker 1: So, dave, if you could maybe just talk about a little bit of learning that your child was on the spectrum and then you can walk through different hurdles and things that you and Erin have had to work through out of maybe the I'm saying out of the non-autistic child side of things that we might not think about.
• 7:07
  Speaker 2: Yep.
• 7:07
  Speaker 2: So our youngest was born normal weight, normal, everything.
• 7:14
  Speaker 2: Pregnancy was great, started the first two years and everything was normal development, crawling, walking, talking a little bit when they were supposed to, and then, right before they turned two, we noticed a big, just a complete drop off in communication and emotional just kind of one emotion and we were concerned.
• 7:56
  Speaker 2: We were very concerned for obvious reasons, but we weren't, we couldn't pinpoint what was going on.
• 8:03
  Speaker 2: To give my wife the majority of the credit she's the one that pushed and didn't take, didn't just accept the answers on the surface.
• 8:17
  Speaker 2: She kept pushing and asking for more information, more appointments, that kind of thing.
• 8:24
  Speaker 2: I was right by her side, but I was more trying to take an optimistic route.
• 8:30
  Speaker 2: So we started with, you know, appointment with the family doctor.
• 8:35
  Speaker 2: Family doctor at the time didn't think there was anything wrong, told us just wait it out.
• 8:41
  Speaker 2: And as time went on, we started looking up you know what it could possibly be, doing our own research online, so things my youngest was exhibiting hand flapping, you know, preferring specific tasks, preferring specific foods.
• 9:07
  Speaker 2: They went from eating a variety of foods to only wanting to eat a specific few said the communication just completely stopped in its tracks.
• 9:21
  Speaker 2: There was no verbal communication or development in any way, shape or form.
• 9:25
  Speaker 2: We eventually, through our own research g boundaries was вся이라서 to convince the family doctor to refer us to up the chain.
• 9:42
  Speaker 2: So we got put on a waiting list with one of the children's hospitals in the area and then we also referred to our local county board of can't remember if it was child services or developmental disability services, but it was an early intervention program with the county that deals with kids who may or may not have something going on, and my youngest was initially diagnosed with a disease or something called mariled.
• 10:18
  Speaker 2: I didn't want to say disease, but a condition called mariled.
• 10:21
  Speaker 2: It's mixed expression of language disorder.
• 10:24
  Speaker 2: Just, you have trouble getting your words out and expressing yourself.
• 10:30
  Speaker 2: So we went with that.
• 10:34
  Speaker 2: We're able to get our youngest into an early intervention program through the county that we live in.
• 10:40
  Speaker 2: That was a huge help.
• 10:43
  Speaker 2: They started to go through a early intervention preschool program through a private school in the area.
• 10:52
  Speaker 2: We were unfortunately put on a very long wait list.
• 10:55
  Speaker 2: We live in one of the largest counties in Ohio, so the wait list for that program was very long.
• 11:06
  Speaker 2: We had been waiting for months and our intervention specialists finally said well, there's a private school in the area that you can go to as an alternative.
• 11:15
  Speaker 2: Let me see if they have an opening.
• 11:18
  Speaker 2: And they did, and luckily we were able to get our youngest in with the private school.
• 11:23
  Speaker 2: The good news is cause it was early intervention.
• 11:25
  Speaker 2: There was no there's no cost to us at the time.
• 11:32
  Speaker 2: And then things went crazy in the world.
• 11:34
  Speaker 2: The COVID pandemic happened.
• 11:38
  Speaker 2: So we have a almost three year old who is a wonderful kid, happy kid, but just doesn't understand the world around them and all of a sudden they're going to a program and now they have to stop.
• 11:53
  Speaker 2: So that was a huge challenge for us.
• 11:56
  Speaker 2: The school tried everything they could to do things remotely, but in situations like this, where you have an individual with certain sensory issues and attention span challenges, it just didn't work.
• 12:15
  Speaker 2: So we worked with the school and then, after waiting what felt like throughout that process, we're also put on a waiting list to have an appointment with the children's hospital in the area.
• 12:32
  Speaker 2: There were one of a few facilities in Columbus area that can do autism spectrum diagnosis and because it was COVID, we had to do a appointment for diagnosis similar to how I'm talking to you right now.
• 12:48
  Speaker 2: We had to do a Zoom meeting and it was one of those experiences I hope a lot of parents don't have to have.
• 13:01
  Speaker 2: We kind of had an assumption that that's what was going on, but we were just waiting for the process to take its course.
• 13:10
  Speaker 2: We weren't jumping to any conclusions.
• 13:12
  Speaker 2: So to be with your child and go through those questions and go through the a few hour long process of what the medical pressure was trying to do over through a computer screen was just one of those just challenging experiences.
• 13:40
  Speaker 2: And then to get the news we've your youngest is autism or your youngest is on the autism spectrum, and then to have the computer cut out immediately after because battery died, you know your range of emotions goes all over the place.
• 13:59
  Speaker 2: The good news is, once we officially received the diagnosis from the hospital, that was what allowed us to seek more treatment options, seek more aid, you know, get things rolling on how we could help our youngest as best as possible, you know be the best kid, an individual that they can be.
• 14:32
  Speaker 2: After we received that, we were able to work with the school and as it stands today, they're still attending that school.
• 14:47
  Speaker 2: It's, unfortunately it's a private school, so there's some, there is some costs involved.
• 14:51
  Speaker 2: But because of his, because of your diagnosis, we do receive some aid from the state of Ohio, which is a good thing and that helps offset some of the cost.
• 15:03
  Speaker 2: But those were the big challenges as far as we had to go through to finally get the diagnosis from the, from the medical professionals.
• 15:14
  Speaker 1: Yeah, and so you have kind of the diagnosis process, and then being able to start getting the care that lines up with with that diagnosis is obviously the one area of the story, but then there's also your and Aaron's I mean your health, your well being and things that are happening as well.
• 15:41
  Speaker 1: I mean, the world isn't stopping, at a certain point, that going through those range of emotions of, okay, what we, where do we have to go?
• 15:52
  Speaker 1: How do we sign up?
• 15:54
  Speaker 1: And oh, there's a wait list of hundreds and and, oh, my gosh, like are they ever going to get to the point where they can get the help?
• 16:03
  Speaker 1: And, in time, what as?
• 16:05
  Speaker 1: What type of emotions were you feeling that way Then?
• 16:10
  Speaker 1: Like, like, what's going on?
• 16:12
  Speaker 1: Why isn't there a better process?
• 16:14
  Speaker 2: Yeah, yeah, our range of emotions was, you know, everything you could think of from from just you know both of us crying for no reason out of frustration, anger for sure at.
• 16:31
  Speaker 2: You know we live in a.
• 16:34
  Speaker 2: We live in one of the biggest cities in the state.
• 16:37
  Speaker 2: We feel like the process should work a little bit easier because it's something that should be used to, to learning the thing, learning the ins and outs of oh well, you work through your county and then the county, and then the county is the one that kind of steers you in the directions, and then learning that certain services.
• 17:00
  Speaker 2: It matters where you live.
• 17:03
  Speaker 2: If I had any advice to any parent who suspects, just as if it has that gut feeling that maybe my child has something.
• 17:18
  Speaker 2: I wanna get to the bottom of it.
• 17:19
  Speaker 2: Where you live is a huge part of that.
• 17:23
  Speaker 2: We live in Franklin County and we have access to more things that I can keep track of.
• 17:31
  Speaker 2: But I know I have an acquaintance.
• 17:34
  Speaker 2: They live up near Sandusky and they don't have access to hardly anything.
• 17:41
  Speaker 2: They don't have an early intervention program where they live.
• 17:44
  Speaker 2: They don't have the private schooling they don't even have.
• 17:48
  Speaker 2: It's just, it's amazing to me.
• 17:51
  Speaker 2: And you think it's 2024, this stuff should be easy, but in reality it's not.
• 18:06
  Speaker 2: But yeah, the emotions were very high, but we tried to keep perspective as well, cause at the end of the day, our child was happy and healthy and just enjoying life with his mom or with their mom and dad, and older sister, who is not my oldest, didn't go through any of these things.
• 18:42
  Speaker 2: I mean, there was no suspicion of any developmental things.
• 18:45
  Speaker 2: So having a child who isn't on the spectrum and having a child who is going through those range of emotions, trying to explain to my oldest, this is why we have to do this.
• 19:01
  Speaker 2: Your younger sibling is a little bit different than you, but I give my oldest a lot of credit too.
• 19:10
  Speaker 2: She was a joy, on all honesty, she still is and just accepting and loving.
• 19:23
  Speaker 2: And what do we need to do to help him?
• 19:26
  Speaker 2: To help my son, and let's do this when anything she could do to help, she was right there.
• 19:39
  Speaker 2: So having, I think, having her along, having her with us at the time to help the great deal because it helped us keep perspective and everything and also just maintain some balance in our lives.
• 19:53
  Speaker 2: Cause we had her to go along with us.
• 19:59
  Speaker 1: Yeah, thanks for sharing such intimate, transparent details.
• 20:05
  Speaker 1: So, if we get kind of maybe to say current state with your child, I know we had personal conversations about just taking things at a high level of they're doing really really well, given where they're at.
• 20:25
  Speaker 1: So you mentioned maybe more, maybe like bottled up thoughts for maybe a period of time and then all of a sudden it's like everything for a period of time in the past is coming out and how exciting that is as a parent to see.
• 20:43
  Speaker 1: Well, it can be a lot, I mean, as we know as parents.
• 20:47
  Speaker 1: So things happen really fast, but there is light at the end of the tunnel.
• 20:53
  Speaker 1: It just depends on each parent and their path and, like you said, where they live the county, the city and the state or country potentially for someone.
• 21:10
  Speaker 2: All those things you listed are do have a huge impact city, county, state and country.
• 21:19
  Speaker 2: It's sad to say, but curiosity.
• 21:27
  Speaker 2: At one point in time my wife and I were curious is the United States the best place to be for his development and for his situation?
• 21:38
  Speaker 2: And the sad thing is a lot of countries or at least countries you would think, okay, that seems like we should look into this A lot of countries do not accept immigrants who have a disability Because the Department of Commerce views them as a burden, so, and they don't care what the disability is.
• 22:04
  Speaker 2: So that was something that was very eye-opening as well.
• 22:11
  Speaker 1: And from a and it also is important right where you work and the benefits that are offered, what things recover, what things aren't.
• 22:19
  Speaker 1: You talk a little bit about that, maybe the importance.
• 22:23
  Speaker 1: You don't have to get into it specifically if you don't want to, where exactly work, but just from a benefit standpoint where an employer could say, wow, this employee is having all these additional extra costs because of given experience, given situation with a family, versus maybe another employee that doesn't.
• 22:46
  Speaker 1: And just how you've been embraced, because I'm sure there's different appointments and things you like to attend and having that flexibility in the careers has been helpful to you as well.
• 23:04
  Speaker 2: Yeah, I know the biggest thing that's helped us is I'm still in a job that allows me to work from home.
• 23:10
  Speaker 2: 90% of the time it's a come to the office as needed basis situation, so it allows us to.
• 23:20
  Speaker 2: It allows our family dynamic to work very well.
• 23:24
  Speaker 2: My son attends a private school.
• 23:26
  Speaker 2: He receives speech and occupational therapy through the school, which is a huge, huge help for us.
• 23:32
  Speaker 2: At one point in time he was getting private speech therapy but then, when he was fully enrolled in the school full time, they said well, we offer it here, you can keep going to private speech therapy, but you don't have to.
• 23:52
  Speaker 2: And then the nice thing with the school that we go to is they work with your insurance provider and also the state.
• 24:02
  Speaker 1: Okay.
• 24:04
  Speaker 2: Because we're under a program with the state of Ohio and I think but I believe it's, I don't know if it's Franklin County specifically, but it's through the state we are allotted so much funding for support services, oh, and the school works with them directly.
• 24:22
  Speaker 2: So it takes a lot of pressure and stress off of us as far as dealing with the okay, is this covered?
• 24:31
  Speaker 2: Is this not?
• 24:32
  Speaker 2: Will this hit the insurance?
• 24:33
  Speaker 2: Will it get covered by the state funding we receive?
• 24:38
  Speaker 2: So it helps a lot.
• 24:42
  Speaker 2: And one thing I would say for anyone watching this is you know, keep looking, keep fighting, keep don't let the.
• 24:55
  Speaker 2: Try your best not to get discouraged in your given situation.
• 25:00
  Speaker 2: We originally weren't sure how we were gonna handle some of the schooling and the tutor and the therapies.
• 25:11
  Speaker 2: Well, luckily, I have a, I have fairly good benefits through my job and the therapies fall under believe they fall under mental health therapies.
• 25:27
  Speaker 2: So there is an allotment of sessions that will fall under your insurance, which is a good thing.
• 25:33
  Speaker 2: I know not all providers are like that, but at least the one I'm on.
• 25:36
  Speaker 2: So that was something that helped quite a bit and it's something we think about.
• 25:41
  Speaker 2: Our family situation is, you know, I'm the primary worker, so insurance is through me.
• 25:48
  Speaker 2: So that's something I always think about.
• 25:49
  Speaker 2: That's a question I've asked before in a job interview.
• 25:55
  Speaker 2: Was okay, here's my family situation.
• 25:59
  Speaker 2: Is this covered?
• 26:01
  Speaker 2: And if they say no, then there's been times where I've had to think real hard about whether I wanna keep pursuing the job opportunity.
• 26:10
  Speaker 2: But getting him in with the school that he's at was a huge help.
• 26:18
  Speaker 2: The school itself helps us a lot and it's been a blessing.
• 26:25
  Speaker 2: So I advise to again seek out your county whoever you need to work with through your county or your city for child developmental services.
• 26:40
  Speaker 2: Pick their brains.
• 26:42
  Speaker 2: Don't be afraid to call people, email people.
• 26:45
  Speaker 2: If you're the type of person that likes to go on social media sites and ask, go ahead and ask the question.
• 26:55
  Speaker 2: Just you know.
• 26:57
  Speaker 2: Hopefully you get some kind people who will reply with some good advice.
• 27:01
  Speaker 2: And just don't always accept what the professionals tell you you can or can't do.
• 27:11
  Speaker 2: I would say just keep looking for that information.
• 27:15
  Speaker 2: I was also lucky.
• 27:17
  Speaker 2: I have a cousin who works at the Rich Center for Autism in Youngstown State and she gave us as many resources as we could handle from her job.
• 27:31
  Speaker 2: So that helped us out quite a bit as well.
• 27:34
  Speaker 1: Excellent.
• 27:35
  Speaker 1: So I'm thinking maybe we could wrap up this episode and we could come back with a second episode.
• 27:45
  Speaker 1: Talk about job searching, career changes through during a pandemic.
• 27:53
  Speaker 1: Does that sound like a good point?
• 27:57
  Speaker 1: Okay, great, we'll close out this episode and then we'll get to the second.
• 28:04
  Speaker 1: So we want to thank our guests.
• 28:06
  Speaker 1: You know Dave Kegel, personal friend and fellow professional and fellow husband and father, to discuss in such endowment, transparent details about having a child on the autism spectrum, the different hurdles that he and his wife they've encountered.
• 28:30
  Speaker 1: In his message of don't just take one answer from a professional as the know, all be all that you continue seeking help, continue looking for funding opportunities and again look for ways to support your family, and if that means in a job interview asking about benefits, then we need to do that.
• 28:56
  Speaker 1: We need to support our families, regardless of where they're at in the journey.
• 29:02
  Speaker 1: So until next time.
• 29:04
  Speaker 1: I am Justin Allen Hayes, founder and executive director of Voices for Voices.
• 29:08
  Speaker 1: Thank you for joining us.
• 29:10
  Speaker 1: Until next time, we ask that you be a voice for you or somebody in need.