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Have you ever wondered how the power of faith could help you navigate through life's most challenging storms? Our latest episode offers a deeply moving conversation with one such father who has done just that. Meet Clay, father to identical twins with severe autism and intellectual disabilities, who shares his journey on raising his children, the grief process he and his late wife experienced, and how they chose to focus on their children's growth and development rather than the cause of their disability. And if you're curious, he also reveals his favorite movie, Top Gun, and explains why it strikes a chord with him.
This heartfelt talk also delves into Clay's struggle of finding an inclusive church and community that could provide the support his family needed. His experiences underline the importance of maintaining a positive outlook, even when the going gets tough. He emphasizes the importance of learning from our blunders, minimizing potential damage and, most importantly, choosing happiness. His insights on accessing disability services and the role of community-based programs are invaluable.
In our final chat segment, Clay discusses the importance of perseverance, faith, and prayer in overcoming life's challenges. He touches on the value of having a supportive community to lean on and how acknowledging and embracing difficult times can be a stepping stone to a brighter future. This episode is a testament to resilience, faith, and finding purpose in disabilities. Join us, as we unravel Clay's inspiring story, and perhaps find a reflection of our own lives in his experiences.
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00:00 - Finding Purpose in Disabilities
15:56 - Life and Church Challenges and Choices
27:19 - Disability Services and Positive Attitude
36:15 - Persevere Through the Storm
WEBVTT
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Hello everyone, thank you again for joining me on another episode of the Doors View.
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Also Today we have a very special guest with us.
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His name is Clay, but right, and he says, happiness is a choice and when faced with tech-age of extreme challenges, people have realized that positive attitudes invigorate life, create options We had not foreseen and proved the perspective of others.
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His late wife and him have three daughters, including identical friends, who both have severe autism and intellectual disabilities.
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Due to a faith-based experience when the trends were young, he had two full-time careers for almost 20 years one to take the bills and one to fulfill his purpose.
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He became a nationally recognized volunteer advocate for people with severe disabilities, often contacted by tech-age legislators and media for insight.
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And family with disabilities, he became an empty nest.
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His wife was diagnosed with ovarian cancer and passed away 18 months later.
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As a result, he launched Clay 2.0 to pursuea new life with excitement.
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Clay, thank you very much for coming on the show today, clay.
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Thank you, dorsey.
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I appreciate the opportunity to be here.
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Thank you very much.
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Dorsey.
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So I would start off with a.
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You know I'd like to start off with you know.
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A simple question What's your favorite movie and what does it reveal about you?
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Dorsey.
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Oh wow, favorite movie would probably be Top Gun, the original, though I like the second one, the Maverick, as well, and I probably like both of them for the same reason.
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I like things that are very action-oriented, things that don't bore me, things that so, movies that can maintain my intention or attention And just an ongoing excitement and the good guys win at the end.
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So it's probably why I like them.
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Dorsey Yes, definitely, and it's funny you mentioned Top Gun because I was interviewing someone in my last episode and he also mentioned Top Gun, maverick as well.
00:03:05.879 --> 00:03:06.181
Clay.
00:03:06.181 --> 00:03:08.811
That's quickly becoming a favorite of many people Dorsey.
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Apparently.
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yeah, so tell us a little bit about how you and your wife handled your trends, diagnosis and telling you know, going into detail about what happened and how that came about, clay.
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Sure.
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So our twins, paige and Mia, were born about seven weeks early, which is not that unusual, and they were in the intensive care unit for a couple of weeks and then came home.
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And it was interesting because almost from the point of conception, we noticed some things were unusual about Carol's pregnancy.
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That was different from our older child, and we didn't really think that much about it, because all pregnancies are different.
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Well, we bring the twins home and there were challenges, you know.
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They cried a lot, or a lot more than their big sister did.
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It took them longer to eat.
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There were a lot of things that people just kept telling us hey, they're identical twins.
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Everyone knows that twins take longer to develop And plus, they were premature.
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They were like, okay, well, it was when we went to the 24 month well baby visit.
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So they just turned two years old.
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And we're at the pediatrician at the well baby visit And they give you this list of 25 questions, these developmental milestones that they ask about, like can say certain words, can say certain things.
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And Carol, my wife, was holding one of our twins, i was holding the other and filling out that form for the twin we're holding And we get to the bottom and look at each other And neither one of us has checked anything off the list.
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I'm like, well, that's not good.
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So we talked to the pediatrician.
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He sent us over to Easter Seals, which was a surprise, we weren't expecting that.
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And Easter Seals did an assessment and came back with their original diagnosis, which was intellectual disabilities.
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And then we added autism.
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Autism was added after that.
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So that's how we found out about it And in my book I talk about we went through the stages of grief, and so you go through the denial stage And even then people were saying, oh, there's nothing wrong with those girls, they're going to be fine.
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When you're in the denial stage, there's a lot of people to support you in that stage and help reinforce it.
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And then we went through the anger stage and the negotiation stage and so on, and then finally, the acceptance part.
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And I think I got to the acceptance stage faster than my wife did.
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She was still very much in the you know, what did we do wrong Or what did she do wrong?
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You know, looking, looking to blame.
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And what made it more frustrating was we would go and have them tested for everything.
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We had a whole host of genetic tests, a whole host of internal gastro, everything, everything under the sun, and everything came back normal, which most people would think that's good.
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Well, when you have two children who obviously there's something not right, having everything come back, as quote, normal doesn't really help.
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You don't really get get where you're trying to go, and that that's that frustrated Carol a lot.
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For me.
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I really wasn't that worried about the cause or anything like that.
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I was more worried about okay, what do we need to do?
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You know, how do we help them grow and develop as best they can, however God has designed them?
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What do we need to do to support that?
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So I was focused more on that than the, than the cause of of their disability.
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Yeah, i know my parents probably went through something similar to what you guys went through with me, because they didn't realize that I was going to be born with a disability until I was born as well.
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One of the questions that I see on your bio is you know you say why do you believe your twin's disabilities are part of God's plan?
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Sure.
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So I've been blessed in my life with two episodes where I attribute it to God giving me absolute clarity on something And it's not a matter of me hearing voices or anything like that, but it's in both situations it was occurrences where I had an immediate attitude change or certain revelation in my head that there's no way I could have cooked it up on my own.
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So the first one, relative to this, is when Paige and Mia were around four years old and it was a Friday night at home and the twins were upset, so they were having some serious behavior meltdowns.
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Paige and Mia cannot speak, so they use behaviors.
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When they were younger, their behavior is what is how they communicated, and so they could be very upset about something and you never know it or never know why.
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So they were upset, they were having meltdowns.
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Our older daughter, she was upset because of everything going on.
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Carol, my wife, she was mad.
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So I did what any good father, husband, leader would do I went to bed And I thought you know what?
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I can't fix it, everybody's safe, we'll deal with it tomorrow, you know well.
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Hopefully everybody will have a good night's sleep.
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So I went to bed and I'm laying there saying a prayer to God and I was mad.
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I was mad at God And I remember saying God, why did you do this to Paige and Mia?
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So why did you let them be born with these disabilities?
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and, to be blunt, why did you do it to me?
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Because this is not what I signed up for, and that was that question.
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Why did you do this?
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It was on my mind as I fell asleep.
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Now, i don't usually go to sleep mad, but if I do, it's almost like the motions marinade overnight And I like wake up the next morning.
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Matter that I was.
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The night before.
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That Saturday morning I woke up and I had a smile on my face.
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I was excited.
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It was like fresh wind getting put into my lungs.
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I was ready to, ready to conquer the world, and the very first words that entered my head were to help people like Paige and Mia, which I immediately interpreted as to help people with severe disabilities like they had.
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Well, knowing my priorities work focus at the time, that's not something I would have thought up on my own And, as sure as you and I are having this conversation right now, i believe I fell asleep asking God a question and He sent the Holy Spirit and answered it.
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So two great things happened at that moment.
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Number one was it happened.
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Number two was I had the wherewithal to realize that it happened.
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So I thought for a moment.
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I said, well, action must be taken.
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I've had this revelation which sounds like a very churchy, yeah, biblically sounding word, but it's like I didn't come up with it, so I have to do something.
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So I did what millions of Americans, millions of people around the world, do every day when they have questions I Googled it.
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So I went to my computer, i sat down there and I typed basically four words intellectual disabilities, dallas, help.
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And up came an organization I had never heard of before, called the Ark of Dallas.
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You found out, the Ark system in the United States is the oldest series of nonprofits helping people with intellectual disabilities.
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So I looked at their website.
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I said, well, this looks like an organization and it helps people like Paige and Mia.
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And to compress the next almost 20 years into 30 seconds, i reached out to them on Monday.
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I was on their board of directors.
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Two weeks later I became their next board president.
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Going through that, i was meeting families, i was understanding issues people were having, the lack of services, and so on.
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Then I got involved in the statewide organization, which enabled me to meet legislators down at our state capitol in Austin.
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I was doing advocacy work with health and human services, meeting all of their senior leadership, understanding the system, understanding how to get things done, and it culminated with me getting appointed by the president the president of the United States to a presidential advisory committee.
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So along that path I was meeting a lot of people and I was learning a lot of things.
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As I would meet families and meet people with disabilities, i could share with them what I learned and help them get the assistance that they needed.
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So I was actually able to fulfill that answer to help people like Paige and Mia.
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That really became the focus of my life at that point.
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So I tell people I had two careers one that paid the bills and one that was the focus.
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I'm very blessed to know thousands of people 95% of the people I know have absolutely no idea what I do for a living, but everybody knows what I do for free And that's because I fell asleep mad at God on a Friday night.
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And the blessing of all that to me is I hope I've been able to help people and I know I have, so there's satisfaction in that.
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But all the people I've met, the experiences I've had, appointed to a advisory committee in Washington.
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None of that would have happened otherwise.
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And Paige and Mia basically their disability became the inspiration for why I'm here.
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So, in other words, don't go to bed asking God a question.
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Well, no, what it means?
00:13:10.589 --> 00:13:12.495
you can go to bed asking God a question.
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You just have to be prepared for the answer.
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Exactly Yeah, because what you don't want to do is get an answer and say, nah, i don't want to do that.
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That would be a very unproductive experience.
00:13:29.849 --> 00:13:33.357
Well, from what you just said, i got a couple of questions out of that.
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My first question is how are your daughters doing today and what are they up to and how are they handling life?
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So Paige and Mia are in a very nice group home not too far from where I live.
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So it's a regular house in a traditional neighborhood Drive by.
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You'd never guess anything is unusual.
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Their disability is very severe So they do not speak.
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They need help with all activities of daily living, as it's called in the profession.
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So they need help with everything bathroom-related.
00:14:08.993 --> 00:14:11.471
They need help getting dressed, getting undressed.
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They can feed themselves, which is good, And they are mobile.
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They can walk under their own power, So that's good.
00:14:17.913 --> 00:14:20.632
But they need 24-7 care.
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They need to be supervised at all times.
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So they're doing well.
00:14:24.448 --> 00:14:31.532
They transitioned out of high school last year So they're in a day habitation program now.
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That gives them things to do And I see them at least every week, at least once a week, So they engage that way.
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But they're doing well.
00:14:39.432 --> 00:14:40.968
They're actually doing very well.
00:14:40.968 --> 00:14:45.475
But with Paige and Mia, success is when there's nothing major happens.
00:14:45.475 --> 00:14:49.213
So if status quo is maintained, usually that's a good sign.
00:14:50.944 --> 00:15:02.233
Yeah, and how did you and you talked about it a little bit when you mentioned about you got appointed to the Breckenenkel Advisory Board.
00:15:02.233 --> 00:15:08.875
What was that like And what was the detail of you doing that?
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So I was presented with that opportunity to join, which I of course did, and it was interesting because there were people from all over the country and you could kind of see there were two groups.
00:15:24.064 --> 00:15:26.329
I mean, everybody had the same objective.
00:15:26.329 --> 00:15:32.313
So not questioning anyone's intent, But from where people came from you could tell different perspectives.
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So you had members who had either a disability themselves so we had a lot of folks with disabilities on the committee or family members like myself were there.
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But then you also had people who are professionals in the disability community, and that's magnificent.
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They have dedicated their careers in that way, which is wonderful.
00:15:57.804 --> 00:16:14.354
But in some cases, in some discussions, it seemed like they were taking an academic exercise to it, where they would speak from theory as opposed to those of us who were living it every day, and it would make for heated discussion.
00:16:14.354 --> 00:16:25.929
And they're not arguments, you know well, heated is an overstatement, but you could tell sometimes someone would say something and I'd think you've never actually done this, have you?
00:16:25.929 --> 00:16:28.712
This is what you're saying.
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I don't disagree with the theory of what you're saying, but it ain't quite that easy to execute sometimes.
00:16:34.314 --> 00:16:37.349
So it looks really good on paper.
00:16:38.684 --> 00:17:51.202
And here's another question I came up with and it's a little more deeper maybe question but do you have any regrets with your own life, or with what you've been through in your life, or with your daughter's and whatnot?
00:17:54.612 --> 00:17:55.214
Not really.
00:17:55.214 --> 00:17:58.125
I wouldn't say I have any regrets Now.
00:17:58.125 --> 00:18:11.439
There were probably times where, if I had known then what I know now, i maybe would not have gotten as frustrated about some things or I might have pursued certain things a little faster.
00:18:11.439 --> 00:18:24.114
But I wouldn't say you know I have any regrets, which is a blessing, and, trust me, i make 20 mistakes a day And I just hope that you know I can find them before they cost.
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If I can find the 19 of them and fix those before anybody notices, that's a good thing, and hopefully the 20th one won't cost too much damage.
00:18:31.253 --> 00:18:36.637
So I'm certainly not like all of us.
00:18:36.637 --> 00:18:38.151
I've got my own fair share of issues.
00:18:38.151 --> 00:18:40.753
It's just a matter of how to mitigate them.
00:18:42.368 --> 00:18:51.053
One of the things I talk about quite a bit is a lot of times problems and situations are presented to us that are out of our control.
00:18:51.053 --> 00:18:58.358
We so many times like to think well, i'm intelligent, i'm patient, i'm prayerful.
00:18:58.358 --> 00:19:01.093
You know I can chart my own destiny.
00:19:01.093 --> 00:19:04.833
Well, maybe not, because sometimes things just happen.
00:19:04.833 --> 00:19:07.691
Life just happens that we can't control.
00:19:07.691 --> 00:19:12.515
What we can control, however, is our response to it.
00:19:12.515 --> 00:19:14.871
So how do we choose to respond?
00:19:14.871 --> 00:19:24.519
So there's a story I tell where I was talking with someone one day, a woman who kind of asked me my story.
00:19:24.519 --> 00:19:36.307
I said, well, that'll take a while, and I shared some highlights and her response was well, we all have experiences and challenges, baggage and drama.
00:19:36.307 --> 00:19:42.932
And I said, well, yes and no, we do have experiences and challenges.
00:19:42.932 --> 00:19:44.269
That's absolutely true.
00:19:44.269 --> 00:19:48.810
We do have experiences and challenges, but baggage and drama are optional.
00:19:48.810 --> 00:19:51.851
It's all in how you choose to look at it.
00:19:52.985 --> 00:20:10.490
And happiness is a choice, and I think that's something that we often forget, and particularly when we're going through a deep crisis situation whether it's, say, raising twins with disabilities, and there's no owner's manual for that There's no.
00:20:10.490 --> 00:20:18.927
You're making it up as you go along and you know you're screwing stuff up and you're just hoping to get through the day, and there's frustrations and disappointments and so on.
00:20:18.927 --> 00:20:29.885
And it really is an attitude adjustment and saying, okay, i'm not going to let this suck me down into the sewer, i'm going to look for the positives, i'm going to.
00:20:29.885 --> 00:20:31.031
What can I learn from it?
00:20:31.031 --> 00:20:35.835
What do I need to do to not get frustrated so I can be as effective a father as possible?
00:20:35.835 --> 00:20:50.269
And it really is our choice on the attitude we choose to take, because God had it in his plan for Page of Me to have their disability And there's absolutely nothing I didn't know in advance and there's nothing I could do about it on the backside.
00:20:50.269 --> 00:20:53.235
So my choice was how did I choose to respond to it?
00:20:53.235 --> 00:20:55.363
to maximize their potential.
00:20:55.363 --> 00:20:57.094
To maximize their God-given potential.
00:20:58.484 --> 00:21:02.673
Yeah, With the work that you attended in Texas.
00:21:02.673 --> 00:21:18.752
did they support you when your daughters were young and do they still support you to this day when you need help and you need encouragement in your life or in their life?
00:21:20.384 --> 00:21:21.812
That was what you were asking about the church.
00:21:22.515 --> 00:21:22.836
Yeah.
00:21:23.018 --> 00:21:23.561
Yeah, the church.
00:21:24.685 --> 00:21:27.531
Yeah, the day did they help you and the day support you.
00:21:31.325 --> 00:21:32.591
That's a bit of a complicated story too.
00:21:32.591 --> 00:21:34.853
So Page of Me were born.
00:21:34.853 --> 00:21:44.536
We've been very active in church, carol and I, since the day we got married, so we were attending a church and we were involved in a lot of Bible study and so on.
00:21:44.536 --> 00:21:53.854
And Page of Me were born and a couple years go by and their disability is diagnosed and as they continued to get older they became a handful.
00:21:53.854 --> 00:22:00.274
They were kind of tough And keeping in mind Carol, i went to work every day.
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So Carol was the stay at home mom, raising the boat right circus, as we called it, and Sunday morning was her respite time.
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That was a chance for her to put the kids in the nursery or put the kids in the children's program at the church and she got to spend a couple of hours with adults talking about adult things and talking about faith and going to church.
00:22:21.813 --> 00:22:42.845
Well, one day I got home and Carol said that the church had called that day and they needed either her or me to be with the twins at every time they were there, so we had to be in the classroom with them, and it's because the church didn't have the resources.
00:22:42.845 --> 00:22:46.195
It was a pretty big church but they didn't really know what to do.
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So their thought was well, we need to have either Clay or Carol here, and they did not have a special needs ministry at all.
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So, even though we love that church, at that moment we decided we had to leave.
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So we never went back.
00:22:58.810 --> 00:23:10.974
So we found a church that had a disability ministry, a special needs ministry for children with disabilities, called, talked to them about it, went in there, and so that then became our gauge on.
00:23:10.974 --> 00:23:15.931
we could only go to a church that had a ministry that could help minister to our children.
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And it's amazing.
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You don't realize the number of churches that do not have one, and it's one of those that you don't know until you know.
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You don't know what you don't know, and it is a large missed opportunity for a lot of churches.
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And what I've learned is that for a church to develop a ministry is first the senior pastor and leadership have to decide that that's something they want to do.
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They have to recognize, you know, is this a group of people who are unchurched or who are unchurched, who need the word of God, who need to hear what he has to say?
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Are we going to do as necessary to enable that to happen?
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Or are we going to say, no, that's too much work And and but to do that it does take resources.
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So yeah, i'm not.
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I'm not criticizing every church that doesn't have a special needs ministry, but I am criticizing the churches that have the resources to have one, but choose not to Right.
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I had a.
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I had a conversation with a pastor one time and he said well, clay, which disability should we serve?
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all of them?
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my response was well, yes or let.
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what we can do is why don't we start with the people God created?
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Oh, i'm sorry, that would be everybody.
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I took it as though what, what that would be like.
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you're asking you know what races should we serve?
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all of them?
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How do you have that cover?
00:24:46.096 --> 00:24:48.269
and I know he meant, i knew what he meant.
00:24:48.269 --> 00:24:51.959
I I think I know what he meant, but I needed that.
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I need to present it back to him to say, okay, i'm pretty sure this is not how you meant it to sound, but this is how it sounded.
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I've been traveling around, you know, 16 years now sharing my story And I could probably count on my hand, my one hand, how many times I've been to a church that have had, you know, a special needs ministry and, like you said, it's very rare for, unfortunately, for you to have I think what happens in most cases is The church, and I'm gonna kind of defend churches who don't have one.
00:25:29.439 --> 00:25:30.282
Is they?
00:25:30.282 --> 00:25:36.971
they don't, but they don't know it's a problem until it's a problem, so it's not until So.
00:25:36.971 --> 00:25:48.018
A church near me is Stonebriar Community Church which is a pastor by Chuck's one doll and Chuck's one dolls, a fairly fairly well-known international pastor, and They they have a very good special needs ministry.
00:25:48.018 --> 00:25:54.942
That's the one we went to after our Previous church told us that we had to be involved in the class every day We went to Stonebriar.
00:25:54.942 --> 00:26:02.221
Well, the reason Stonebriar has a really great special needs ministry is Chuck's one dolls grandson as autism.
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So, yeah, he clearly in his own family he saw the need and made sure that they built that into the church.
00:26:09.949 --> 00:26:29.033
And I think when you look at other churches it's usually when a either maybe a pastor or a Senior leader in the church Has has a child or a family member with a disability, that that's the inspiration that they need to go ahead and get one developed right.
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What are the top things that family with disability must do?
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