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Your Child's IEP Is Probably Wrong — Here's Why · The Parent Tap

• 0:00
  SPEAKER_01: Thanks for having me.
• 0:01
  SPEAKER_00: Yeah, absolutely.
• 0:02
  SPEAKER_00: So I want to kind of get right into the question.
• 0:03
  SPEAKER_00: So you spent uh 20 years as an educator.
• 0:07
  SPEAKER_00: I I made it about five myself.
• 0:08
  SPEAKER_00: So congrats on that, Pete.
• 0:10
  SPEAKER_00: What is the single biggest tactical error parents make when negotiating with the school district?
• 0:15
  SPEAKER_01: Well, I think, you know, it it's a very broad conversation, quite honestly.
• 0:20
  SPEAKER_01: And I don't know that I could narrow it down to one, but what I will say is this being a parent of a child with a disability with special needs is a very overwhelming experience.
• 0:32
  SPEAKER_01: And one of the things that I say a few things to families.
• 0:36
  SPEAKER_01: First of all, you know, it it is a lot.
• 0:39
  SPEAKER_01: So you want to acknowledge that you have a lot on your plate for sure.
• 0:42
  SPEAKER_01: But it's never too soon to start looking at long-term planning for your child or looking at, you know, where is this going to lead in terms of their educational future, you know, type of a thing.
• 0:54
  SPEAKER_01: You know, what are those?
• 0:56
  SPEAKER_01: You know, I every parent concerns themselves with, hey, what's the best school district in my area, the best school setup, and all of those type of things.
• 1:03
  SPEAKER_01: But as a parent of special needs, you're looking at that for the now, but but also for years down the road.
• 1:07
  SPEAKER_01: I know in the case of my own son, and I'm I'm divorced from his mom and remarried, but um, you know, we intentionally moved to a very specific suburb, you know, outside of Chicago to get him the best, you know, education based on our research kind of thing.
• 1:22
  SPEAKER_01: And and it was a wonderful experience for many years until it wasn't, right?
• 1:26
  SPEAKER_01: So, you know, the the the first thing that I say is parents want to educate themselves.
• 1:31
  SPEAKER_01: Don't make assumptions, first of all, because that's the other thing that I've seen.
• 1:35
  SPEAKER_01: And and especially also working as both a public and a private school teacher.
• 1:39
  SPEAKER_01: Like it's like any business, right?
• 1:41
  SPEAKER_01: You can make things pretty on the outside.
• 1:43
  SPEAKER_01: You can have a great website, you can have all these wonderful testimonials, and you know, you go to the building or the or the school grounds environment, whatever, and it just wows you.
• 1:52
  SPEAKER_01: But but you really need to understand what really is the quality of this.
• 1:55
  SPEAKER_01: Now, in many ways, it's it's going to be hard for you to know, but that's where you want to try to do your due diligence.
• 2:00
  SPEAKER_01: You want to try to communicate with as many parents, families as possible.
• 2:04
  SPEAKER_01: You know, the social media, Facebook, obviously, those types of things are great for that.
• 2:07
  SPEAKER_01: And I know we have a bunch of those groups, obviously, in the Chicago area where people are like, hey, I'm thinking about moving to such and such area.
• 2:14
  SPEAKER_01: What do you suggest in terms of the schools or districts?
• 2:16
  SPEAKER_01: And and really kind of get a feel for it.
• 2:19
  SPEAKER_01: But the other thing, too, is that parents need to know as advocates, you know, really everything kind of starts and stops with them.
• 2:26
  SPEAKER_01: You know, you you go into those IEP meetings, and and this is another piece of advice I love to give, you know, you go into an IEP meeting and both sides are, you know, it it's almost that that tense kind of stare down, you know, in the old Western movies.
• 2:39
  SPEAKER_01: You know, you're you're just expecting a gunfight, you're expecting trouble.
• 2:42
  SPEAKER_01: And the reality is, is that what I say is, hey, listen, the biggest thing you can do as parents, first of all, is do do your due diligence, but also communicate.
• 2:50
  SPEAKER_01: Make sure that the first time you're meeting that staff isn't at an IEP meeting.
• 2:54
  SPEAKER_01: Now, for the most part, you know, obviously you're you're going to meet or engage with those teachers.
• 2:59
  SPEAKER_01: But my ex-wife and I, my son's mom, who was also an educator for many years and still is, we would always try to take it a step further, right?
• 3:06
  SPEAKER_01: We would always do extra communication.
• 3:08
  SPEAKER_01: We would always see how we could engage with those teachers prior to the school year.
• 3:12
  SPEAKER_01: We always made sure the teachers knew how much we were on their side, because, oh, by the way, we know how hard your job is because we know it firsthand.
• 3:20
  SPEAKER_01: And then, of course, making sure that there's a dialogue and communication with the school staff, the private therapy staff, everybody is talking, everybody is sharing information so that when you get to that IEP table, you know, this isn't like I've never seen you before, and you know, now I hate you, as opposed to as much as you can foster that, and there are other things, you know, we we've certainly done along those lines as well.
• 3:41
  SPEAKER_01: But that really allows the tension levels to come down.
• 3:44
  SPEAKER_01: And sure, you're gonna have hard conversations that, you know, that that is going to happen.
• 3:48
  SPEAKER_01: But but those conversations can at least be framed a little better in terms of, hey, listen, we're all on the same team here.
• 3:54
  SPEAKER_01: We know that.
• 3:55
  SPEAKER_01: I care about you.
• 3:56
  SPEAKER_01: We all care about, you know, our child, about, you know, the student in question here.
• 4:00
  SPEAKER_01: What can we do to make this the best case scenario and and and the best situation for them?
• 4:05
  SPEAKER_01: And more often than not, I will tell you we have had good experiences.
• 4:08
  SPEAKER_01: Now, I will add that, of course, we did eventually have to transition him out of that district.
• 4:13
  SPEAKER_01: He grew up in one particular district.
• 4:14
  SPEAKER_01: He started in kindergarten, made it all the way to sophomore year in high school.
• 4:18
  SPEAKER_01: He had a rough sophomore year.
• 4:19
  SPEAKER_01: Turns out that was not a fit for him anymore.
• 4:22
  SPEAKER_01: We acknowledged that.
• 4:23
  SPEAKER_01: The school acknowledged that, and so we made a different choice.
• 4:25
  SPEAKER_01: But but the fact is that for a very long time, for you know, a very a very large part of his school years, we made it work with a good school district, but also his mom and I also made sure we kind of laid the groundwork for those positive relationships as well.
• 4:40
  SPEAKER_00: Yeah, you have such an interesting perspective because being on both sides of that meeting table, you know, like I'm about to be there myself.
• 4:47
  SPEAKER_00: I just my four-year-old daughter has special needs, and we just found out um in the fall she's about to enter kindergarten.
• 4:53
  SPEAKER_00: And so that's gonna be me here shortly.
• 4:56
  SPEAKER_00: I was a regular education teacher, but I had special needs.
• 4:59
  SPEAKER_00: I mainstreamed those children into my classroom for years.
• 5:03
  SPEAKER_00: And I was a paraprofessional before that.
• 5:05
  SPEAKER_00: So my wife was a special needs teacher.
• 5:07
  SPEAKER_00: So we kind of have a lot a lot of uh commonalities here.
• 5:10
  SPEAKER_00: So this is gonna be very helpful for not only me, but everyone else out there that's kind of going through this.
• 5:15
  SPEAKER_00: So your son is uh from what I gathered, is 18 and nonverbal, right?
• 5:19
  SPEAKER_00: So for the for the dad out there who just received a diagnosis just like I did last fall, you know, a different diagnosis still, you know, especially as you know, special needs is a very broad spectrum.
• 5:31
  SPEAKER_00: What is the first operational step he needs to take to avoid the paralysis?
• 5:36
  SPEAKER_00: I'm still kind of in the paralysis stage, to be honest with you, because it's overwhelming to know what resources they need, what supports they need, how to kind of get the family up to speed, um, what's it gonna look like from kindergarten and beyond, you know, uh and like you mentioned, picking the school or picking the, you know, system is only a little bit of the process.
• 5:55
  SPEAKER_00: There's so much more to it.
• 5:56
  SPEAKER_00: The paperwork, the meetings, the in-house services, you know, in-school services, whatever comes with it.
• 6:01
  SPEAKER_00: So, you know, kind of what's the first like how did you handle, I suppose, once you found out your son was gonna have some challenges?
• 6:09
  SPEAKER_01: Yeah, that's a that's a long story, but I'll I'll try to be as concise as possible.
• 6:14
  SPEAKER_01: So, you know, here here's the first thing I'll say, and and and thank you, by the way, for for specifying dads there, because a lot of my work, while it's with families for sure, I really do kind of a laser focus on the dads.
• 6:25
  SPEAKER_01: Why?
• 6:26
  SPEAKER_01: Because what I found is that there are a lot of resources for parents and families, but many of them, most of them, are skewed toward moms.
• 6:33
  SPEAKER_01: Now that's okay.
• 6:34
  SPEAKER_01: We love our moms, especially our autism mama bears.
• 6:36
  SPEAKER_01: My son's mom is one of those, you know, and and that's great.
• 6:39
  SPEAKER_01: But but dads have a part to play here too.
• 6:41
  SPEAKER_01: And unfortunately, you know, what what I've seen and and also what I experience personally is, you know, first of all, as men, we process things differently.
• 6:49
  SPEAKER_01: And, you know, as as parents, as much as, you know, there are so many great dads I have met of typical and and special needs kids.
• 6:56
  SPEAKER_01: And we all want to be good dads to our kids, but when you throw disability in there, a few things happen.
• 7:01
  SPEAKER_01: So, for example, uh a lot of the families that I talk to will say, you know, dad responded with this diagnosis, whatever the diagnosis was, with I'm gonna throw myself into my work and my career, I'm gonna work really hard, make a lot of money, we're gonna cover all of these therapies and treatments and all of this stuff.
• 7:17
  SPEAKER_01: And that's great.
• 7:18
  SPEAKER_01: You know, they're that that's not something to be, you know, attacked for.
• 7:22
  SPEAKER_01: But the problem is that a lot of men detach emotionally from the family, you know, when you kind of go that route.
• 7:29
  SPEAKER_01: Now, again, I know a lot of amazing special needs dads, but for a lot of them, you know, you kind of get lost in the shuffle because men are fixers.
• 7:36
  SPEAKER_01: So the thing I'm gonna do is I'm gonna work, I'm gonna make a lot of money, we're gonna pay for these things, life is good.
• 7:41
  SPEAKER_01: Mom is handling, and and also in my family's case and in our situation, you know, mom is gonna handle the insurance, she's gonna handle the doctor appointment, she's gonna handle the scheduling, she's gonna handle all the nuts and bolts.
• 7:52
  SPEAKER_01: My son's mom was not only very good at that, but wanted to do that.
• 7:55
  SPEAKER_01: Like that was her world, and you know, she just felt good about being in control of it, and okay, no problem.
• 8:01
  SPEAKER_01: Here was the issue for me, though.
• 8:02
  SPEAKER_01: I wasn't the breadwinner in our family.
• 8:04
  SPEAKER_01: Uh, we were both always teachers, but my wife, my ex-wife, always made more money than me.
• 8:09
  SPEAKER_01: So I just couldn't write a blank check.
• 8:11
  SPEAKER_01: And she also liked handling, again, all of the detail-oriented aspects of it.
• 8:14
  SPEAKER_01: So I had to start to ask myself, okay, so what do I do?
• 8:17
  SPEAKER_01: You know, what's my role?
• 8:18
  SPEAKER_01: I mean, yes, I I take them to stuff, I pick them up from things, I hang out with them if mom's doing something, and and that's fine.
• 8:24
  SPEAKER_01: But what am I really contributing here?
• 8:26
  SPEAKER_01: And so what I learned, and and I I do a whole thing in a lot of my my um interviews and presentations about community, because I also learned early on from, you know, my son had, you know, getting his diagnosis at right about three, you know, I learned pretty quickly that I didn't have community, right?
• 8:42
  SPEAKER_01: Meaning, you know, I I had family, I had friends, but none of them understood what I was going through.
• 8:46
  SPEAKER_01: No one could relate.
• 8:47
  SPEAKER_01: You know, people are like, I had plenty of friends, say, dude, I love you, but I don't know what to what to tell you.
• 8:51
  SPEAKER_01: And so finding guys that were like me, but also guys that were willing to be in community, communicate, share, you know, have have a dialogue about these things.
• 9:01
  SPEAKER_01: And and I'll tell you too that, you know, my advocacy work really started out of that need for community.
• 9:08
  SPEAKER_01: And and, you know, I started out very small, by the way, you know, and this is also my advice I give to people.
• 9:12
  SPEAKER_01: You know, you you don't just have to come out tomorrow and say, I'm an advocate or I'm a speaker or whatever.
• 9:18
  SPEAKER_01: You know, it's like start out small, you know.
• 9:20
  SPEAKER_01: I really started by just trying to get a group of the dads that attended, who, you know, whose kids attended my son's school, get just getting them together.
• 9:27
  SPEAKER_01: And I'll tell you that the first time I tried that, I had like 10 guys come out and I said, wow, this is great.
• 9:33
  SPEAKER_01: And then the next time I had two guys come out, and then the next time I had one guy come out.
• 9:36
  SPEAKER_01: So, you know, we put that, you know, on the back burner.
• 9:39
  SPEAKER_01: And then a few years later, I tried it again and tried actually found another dad that wanted to do it with me.
• 9:44
  SPEAKER_01: And we kind of combined forces and it turned out to be a group that I led for, you know, about a good eight years and just recently stepped away from.
• 9:52
  SPEAKER_01: So, you know, finding, you know, and building those intentional relationships with guys that are like you, because again, what what you don't want to do, and and I I think a lot of dads, you know, in the beginning, you don't know what what you don't know and you're well-meaning and well-intentioned, but it's it's interesting to see, just like in my case, how quickly you can become detached from the family because things do become so overwhelming, or caring for your child just kind of becomes this routine job setup of, you know, okay, you know, I'm with my child for this amount of hours and then mom's gonna take him or vice versa.
• 10:26
  SPEAKER_01: And what happens there is not only do you develop stress and and a feeling of being overwhelmed, but there's resentment, right?
• 10:32
  SPEAKER_01: There, there's resentment, there's anger that comes in.
• 10:35
  SPEAKER_01: It's, you know, and I definitely felt that in the early years, you know.
• 10:38
  SPEAKER_01: You know, my wife was, you know, and and again, again, my wife, my ex-wife was a great mom, but you know, she also, you know, would have, you know, social time with with her friends, or, you know, that she worked a second job on the weekend sometimes.
• 10:50
  SPEAKER_01: So, you know, legitimately she had other stuff, and that's okay too.
• 10:53
  SPEAKER_01: But if you there's no balance there, it's interesting how quickly that imbalance will pop up in your marriage and cause strife.
• 11:01
  SPEAKER_01: And then it becomes a, you know, I I can't take care of my son all the time because I don't have time to recharge.
• 11:09
  SPEAKER_01: I don't have time to step away.
• 11:12
  SPEAKER_01: I don't have time to make a space for myself.
• 11:15
  SPEAKER_01: And that self-care piece is so important.
• 11:17
  SPEAKER_01: And again, it's it's great to, you know, be able to have a a time and space maybe to connect with other parents or dads like you, right?
• 11:24
  SPEAKER_01: And so that's why I'm a big proponent of, you know, dad's groups that meet up.
• 11:28
  SPEAKER_01: You know, I've certainly led and been a part of in-person ones.
• 11:31
  SPEAKER_01: There are virtual ones I've been a part of and I'm still a part of.
• 11:34
  SPEAKER_01: Um, and so so there's, and there are a lot of opportunities for that.
• 11:37
  SPEAKER_01: Um, and and I encourage anybody, you know, to reach out to me if if you're looking to get plugged into some of those.
• 11:42
  SPEAKER_01: But, you know, at the end of the day, it's a conversation about you will get burned out very quickly, especially if your child has a more severe disability, um, whether it's medical issues, cognitive, et cetera.
• 11:53
  SPEAKER_01: In Mison's case, it really wasn't the medical thing per se, but but with his cognitive issues, he could not be left alone ever, right?
• 12:00
  SPEAKER_01: And so, as much as I love spending time with him, when you're burned out, you're burned out.
• 12:05
  SPEAKER_01: And if you're not doing those things to recharge your reset, and again, it doesn't always have to be a support group or a bunch of guys hanging out.
• 12:11
  SPEAKER_01: It could just be you sitting on a couch staring at a wall for 15 minutes.
• 12:15
  SPEAKER_01: That's fine, right?
• 12:16
  SPEAKER_01: But if you're not getting that, then, you know, it's gonna build up that resentment.
• 12:22
  SPEAKER_01: Maybe, and then also on the flip side, maybe even, you know, guilt.
• 12:25
  SPEAKER_01: I I know in my case, sometimes I I began to feel guilty.
• 12:28
  SPEAKER_01: Like, should I even be wanting this or asking for this because, oh, my wife is, you know, doing this, that, or the other.
• 12:34
  SPEAKER_01: So, you know, that you know, that's not fair that I asked for this.
• 12:36
  SPEAKER_01: Well, really it is, because guess what?
• 12:38
  SPEAKER_01: You you need it for your own sanity, your own peace of mind, but also so that you can be present for your child when you're with them.
• 12:44
  SPEAKER_01: So having that intentional community, you know, whether it's a group of guys or one guy that is kind of on the same journey as you, that you can connect with and, you know, just kind of share life with, but also too, making sure that that you're both supporting each other's self-care needs, both parents, you know, whatever you have going on, making sure that there's a a balance there so that one of you or or both of you isn't starting to resent the other um, you know, for not getting anything.
• 13:12
  SPEAKER_00: Yeah, no, I love how you touched on that piece of like dads need so, you know, dads need community, dads need support, because there is so much I see out there too, where it's like a mom coach or mom blogs, or you know what I mean?
• 13:23
  SPEAKER_00: Like it's it's all geared towards moms.
• 13:25
  SPEAKER_00: And you know, obviously my wife is a mom and she does an amazing job, and I get that.
• 13:29
  SPEAKER_00: But as a dad, I'm I'm involved just as much.
• 14:12
  SPEAKER_00: Um, and I want to be involved just as much with my kids.
• 14:15
  SPEAKER_00: And it just feels like there's not as many resources out there.
• 14:18
  SPEAKER_00: So it's great that you're you started this up and you have those, you know, those connections to add people into these groups and infiltrate them and and really just build that community because it does feel very isolating.
• 14:30
  SPEAKER_00: I I feel it myself.
• 14:31
  SPEAKER_00: I mean I'm not even starting with the the process and I already feel overwhelmed.
• 14:35
  SPEAKER_00: You know, I'm right there with you, man.
• 14:36
  SPEAKER_00: I mean different circumstances, but we're we're kind of still, you know, in a very similar space, uh, so to speak.
• 14:42
  SPEAKER_00: You know, I wanted to touch on this because you call yourself the Swiss Army knife of advocacy.
• 14:47
  SPEAKER_00: I love that.
• 14:47
  SPEAKER_00: So, what are the three non-negotiable tools every special needs parent must have in their arsenal?
• 14:53
  SPEAKER_01: Yeah, that's that's a great question.
• 14:54
  SPEAKER_01: Well, I I I think so you you mentioned three.
• 14:58
  SPEAKER_01: So be because you mentioned three, I I will actually refer to something that I created several years ago.
• 15:03
  SPEAKER_01: And and I created this, it was interesting because uh, as I mentioned, I'm I'm divorced from my son's mom.
• 15:09
  SPEAKER_01: And we actually got divorced in 2020.
• 15:11
  SPEAKER_01: Our divorce actually finalized right as COVID was kicking in.
• 15:14
  SPEAKER_01: So it was a very interesting time in the world.
• 15:17
  SPEAKER_01: And being a parent of a child with a severe disability during COVID when the world is isolated, and you have a child who, you know, my my son, you know, he he loves watching his his videos on the TV or the iPad, but really he's not one of these kids who's like so like kind of caught up in technology.
• 15:35
  SPEAKER_01: He needs to move.
• 15:36
  SPEAKER_01: He's a total gross motor kid.
• 15:37
  SPEAKER_01: And even now that he's older, he definitely doesn't move as fast as he used to, but he's moving around, right?
• 15:42
  SPEAKER_01: So, so the fact that I I really felt myself on an island, I'm I'm divorced.
• 15:47
  SPEAKER_01: I have my son.
• 15:48
  SPEAKER_01: My my son, by the way, is also an only child, so it's there were no typical siblings.
• 15:52
  SPEAKER_01: So when I have him, it's just me and my nonverbal kid.
• 15:54
  SPEAKER_01: And we're like, okay, well, and now there's COVID, and now we're all locked up in the house, and what do we do, right?
• 16:00
  SPEAKER_01: So as I was going through this process of kind of negotiating all of these feelings now with just being very recently separated and okay.
• 16:09
  SPEAKER_01: And I've written articles about it, and also there are other podcasts.
• 16:12
  SPEAKER_01: If you go on my website, you can actually find old videos and interviews I've done talking about this too.
• 16:17
  SPEAKER_01: And I felt that those were perfect for me in terms of where I was at that point in my life.
• 16:22
  SPEAKER_01: But then I saw that there was really value in them for any parent of a child with a disability, whether divorced or not.
• 16:29
  SPEAKER_01: And also, too, even with engaging as a parent with your school staff, with your IEP team, whatever.
• 16:35
  SPEAKER_01: I actually I I have a book that just came out um this year, which is my memoir, but actually I contributed to another book that'll be coming out in June that a friend did with Temple Grandin.
• 16:43
  SPEAKER_01: Um, and I also refer to the three C's as well in there.
• 16:46
  SPEAKER_01: But but again, going through them, so so that that first C is communication, right?
• 16:51
  SPEAKER_01: So communication came up for us, and this I think is a great example of it, when I had just, and the divorce wasn't even finalized yet, but you know, we were pretty close to it.
• 17:00
  SPEAKER_01: I had already moved onto the house.
• 17:02
  SPEAKER_01: And I was dropping my son off from having him on a weekend, and it was March, and literally the minute that I dropped him off, you know, there was a news report that came in on the radio saying the Illinois governor said as of tomorrow, which was Monday, all uh restaurants, bars, cafes, everything, all of those public, you know, food, food-related places, retail, et cetera, are all just being shut, right?
• 17:23
  SPEAKER_01: So obviously there was drive-thru, there was delivery, whatever, but there was, you know, you can't go to these places anymore.
• 17:29
  SPEAKER_01: Now, of course, having a child like ours, you think, wait a minute, this kid needs his food from this place.
• 17:34
  SPEAKER_01: This kid likes going out to this place.
• 17:36
  SPEAKER_01: This kid likes this, that, and the other.
• 17:38
  SPEAKER_01: Now what do we do?
• 17:39
  SPEAKER_01: And I remember I literally called my ex as soon as I heard that.
• 17:43
  SPEAKER_01: I just dropped my son off and said, hey, listen, this just came out.
• 17:46
  SPEAKER_01: You're gonna want to be aware if you've got him and you know, he's pitching a fit about, you know, he really wants to go to such and such.
• 17:53
  SPEAKER_01: Just be aware might not be open.
• 17:54
  SPEAKER_01: It probably won't be open.
• 17:56
  SPEAKER_01: So, you know, that was a great example of communication there, but but certainly there there are better ones in that.
• 18:01
  SPEAKER_01: You want to make sure that lines of communication are open and clear, right?
• 18:04
  SPEAKER_01: Because it's very easy, like in my case, for example, with with my ex or Soon-to-be-ex, and you know, uh again, even if, you know, we're I'm I'm speaking to other divorced parents out there, and and there are a lot I know that actually do it very well, but but you know, there are always hard feelings, there's always bumps in the road, you know, or or even if you are married, right?
• 18:21
  SPEAKER_01: And and normally, you know, you you think your marriage is, you know, pretty airtight.
• 18:25
  SPEAKER_01: But at the same time, again, we always have bad days.
• 18:28
  SPEAKER_01: So keeping communication clear and open, as well as keeping it open again for, as I mentioned, our school staff, our private teams, our IEP teams, et cetera, you know, make it as as open and as functional as possible so that there are no surprises.
• 18:42
  SPEAKER_01: You know, we're all on the same page here.
• 18:44
  SPEAKER_01: You know, maybe somebody forgets something, maybe somebody misunderstood something.
• 18:47
  SPEAKER_01: That's okay.
• 18:48
  SPEAKER_01: You know what?
• 18:49
  SPEAKER_01: Let's go back to it, let's refresh it, kind of thing.
• 18:51
  SPEAKER_01: But open and clear communication really helps in a lot of these tougher situations or conversations.
• 18:58
  SPEAKER_01: And then coordination, obviously, right?
• 18:59
  SPEAKER_01: So coordination was, you know, again, having to deal with managing life as a single parent.
• 19:04
  SPEAKER_01: And I say single parent, even though my son's mom was involved.
• 19:07
  SPEAKER_01: But if you are a parent of a child with a severe disability and you have them on your own for any number of days, you sure feel like a single parent for sure.
• 19:15
  SPEAKER_01: So um, you know, in my case, it was, hey, coordinating schedules, coordinating calendars.
• 19:20
  SPEAKER_01: You know, one thing that um that is a big piece of advice that I give to any family or married couple, okay, especially in in the world of disability and special needs, is having a calendar, right?
• 19:32
  SPEAKER_01: Now, again, it it sounds simple enough.
• 19:34
  SPEAKER_01: Yeah, well, of course, we all have calendars.
• 19:36
  SPEAKER_01: We do.
• 19:37
  SPEAKER_01: But I'm not just talking about a calendar for when, you know, your kid is going to therapy or when your kid's going to the doctor or this or that.
• 19:44
  SPEAKER_01: I'm like, you have to have a calendar where you also know, hey, and I mentioned it earlier, when is the self-care going in?
• 19:51
  SPEAKER_01: When am I scheduling that time for me?
• 19:53
  SPEAKER_01: You know, my ex-wife and I, even though we wound up getting divorced for years, because we had worked with a counselor, we learned to have a calendar where we knew, hey, you know what, such and such day or such and such night, that's yours.
• 20:04
  SPEAKER_01: This one is mine.
• 20:05
  SPEAKER_01: You can do whatever you want on that night.
• 20:06
  SPEAKER_01: You want to go exercise, you want to go meet your buddies, you want to, what whatever your thing is, fine.
• 20:12
  SPEAKER_01: That's your time.
• 20:13
  SPEAKER_01: Okay.
• 20:13
  SPEAKER_01: Now, if you want to switch days or something comes up, we can talk about it.
• 20:17
  SPEAKER_01: But I'm honoring your time, you're honoring my time.
• 20:20
  SPEAKER_01: This is our family time, this is our date night.
• 20:22
  SPEAKER_01: Always got to have a date night on the calendar once a week, even if it's just sitting in front of the TV for half an hour, you got to do something together, right, to maintain that relationship.
• 20:30
  SPEAKER_01: So having a calendar, I feel, and and again, especially being divorced and maintaining, again, that good communication and saying, hey, you know, I've got my child now, and then, you know, mom's gonna take you or dad's gonna take you, whatever.
• 20:43
  SPEAKER_01: I know another time personally when that got really pressed was, you know, my son is no longer in the school district he grew up in.
• 20:49
  SPEAKER_01: Well, that's because during his sophomore year of high school, he had he had a very difficult time.
• 20:54
  SPEAKER_01: He started to show signs of aggression, which were not um typical for him.
• 20:57
  SPEAKER_01: The school staff was being overwhelmed.
• 20:59
  SPEAKER_01: You know, the the two of us really didn't know what to do eventually and meant he had to wind up attending a school out of state, at least for the time being.
• 21:06
  SPEAKER_01: But during that time, we had to coordinate because the the school, unfortunately, was calling us almost every day when there was an issue and they were saying, hey, can you come pick him up?
• 21:14
  SPEAKER_01: Because they literally couldn't manage him.
• 21:16
  SPEAKER_01: So between the two of us and and essentially two households and saying, I have my job, you have yours, I wasn't teaching by then.
• 21:23
  SPEAKER_01: I I was already, I was actually working for a a different disability organization.
• 21:28
  SPEAKER_01: But um, you know, I still had work calls and Zoom calls and and things that I was responsible for.
• 21:33
  SPEAKER_01: So, you know, again, we we had to manage that.
• 21:35
  SPEAKER_01: You know, when can you get them?
• 21:36
  SPEAKER_01: When can I get them?
• 21:37
  SPEAKER_01: That type of thing.
• 21:37
  SPEAKER_01: That coordination is key.
• 21:38
  SPEAKER_01: But then the last one, and I think this is one that we all need, regardless of what our title is or how we show up or anything, is compassion.
• 21:46
  SPEAKER_01: We must have compassion for each other and our experiences.
• 21:50
  SPEAKER_01: So teachers need to have compassion for families like mine who are going through this.
• 21:54
  SPEAKER_01: It is hard.
• 21:55
  SPEAKER_01: I will not sugarcoat it, and I probably don't need to to anybody listening to this.
• 21:59
  SPEAKER_01: It is hard.
• 21:59
  SPEAKER_01: Right.
• 22:00
  SPEAKER_01: And so you want to remember how how difficult that a lot of even the smallest, insignificant conversations might be, because again, your parents are already so on edge, there's so much anxiety, so much uncertainty, you know, that that's a whole, you know, tough, tough road right there.
• 22:15
  SPEAKER_01: And then, you know, for educators too, uh, teaching is not an easy job, you know, it really is not, you know, and and I I really, as much as I loved it when I started, I I don't know it's something that I could do full time all the time now.
• 22:29
  SPEAKER_01: That that's for sure.
• 22:30
  SPEAKER_01: So, but but having compassion for them as well and how hard they work and and how much is put on their plate and continuing to be put on their plate, quite honestly.
• 22:38
  SPEAKER_01: And so managing.
• 22:39
  SPEAKER_01: Managing that and having compassion for that.
• 22:41
  SPEAKER_01: But then also, even as a family, whether you're married, divorced, having compassion for your spouse, having compassion for your partner.
• 22:47
  SPEAKER_01: Hey, you know what?
• 22:48
  SPEAKER_01: You've had a rough day.
• 22:49
  SPEAKER_01: You know, maybe I can pick up some slack for you here.
• 22:52
  SPEAKER_01: Or, you know what, you had a really tough night with our kid.
• 22:56
  SPEAKER_01: You know what, I'll I'll give you a break tomorrow or whatever you need.
• 22:59
  SPEAKER_01: You know, you tell me what you need.
• 23:01
  SPEAKER_01: Let's just, again, keep the communication open there.
• 23:03
  SPEAKER_01: So, you know, having compassion for everybody's experience, right?
• 23:07
  SPEAKER_01: And remembering that this is hard, this this is a hard world to be in.
• 23:11
  SPEAKER_01: It's a hard journey.
• 23:12
  SPEAKER_01: All of us are trying to do the best we can.
• 23:15
  SPEAKER_01: Let's just take a step back, take a breath, remember that.
• 23:18
  SPEAKER_01: And as much as we can be good to the people around us, you know, that that's just gonna make everything better.
• 23:24
  SPEAKER_01: You know, it's it's like an an old pastor once told me about marriage.
• 23:28
  SPEAKER_01: He said, you know, marriage is like a checking account, right?
• 23:31
  SPEAKER_01: You got to put deposits in.
• 23:33
  SPEAKER_01: You have to put deposits in the account so that someday, you know, on the rainy day when you need to pull something out, the money's there.
• 23:40
  SPEAKER_01: Likewise with relationships, you know, marriage, et cetera.
• 23:43
  SPEAKER_01: You know, you want to make sure that you've invested in those so that people then know, hey, you know what?
• 23:49
  SPEAKER_01: Yeah, I got your back.
• 23:50
  SPEAKER_01: And you know what?
• 23:51
  SPEAKER_01: Um, you know, next time I'll have your back because I know you had mine.
• 23:54
  SPEAKER_01: You know, what what whatever that looks like, right?
• 23:56
  SPEAKER_01: So those three C's I think have been instrumental for me.
• 23:59
  SPEAKER_01: I I think they've helped.
• 24:00
  SPEAKER_01: One, you know, certainly being a parent of disability and special needs, but also having walked that road as an educator and and just in general, just in dealing with all of these relationships that that you do as a parent, I think they can be very helpful.
• 24:13
  SPEAKER_00: Yeah, I appreciate you sharing those experiences and the three C's and you know, it seems pretty all-encompassing in terms of so many different facets of life about how those kind of overlap and you know the communication piece, not only with you know, your your child and and their support system, but also with your significant other and you know what I mean, like in it kind of just just ever-evolving thing and how if you don't take a step for yourself or a break for yourself, you're gonna completely burn out and you know, kind of lose your mental capacity to to do anything.
• 24:43
  SPEAKER_00: And I've you know, I've I've you know, I have two toddlers right now.
• 24:45
  SPEAKER_00: So I have a special needs daughter who's four and a one-year-old.
• 24:49
  SPEAKER_00: So like I've been there too, where it's like, oh, I don't know what I'm doing.
• 24:52
  SPEAKER_00: You know what I mean?
• 24:52
  SPEAKER_00: Like there's some days where I'm just like, I need like an hour.
• 24:56
  SPEAKER_00: You know what I mean?
• 24:56
  SPEAKER_00: Like I need an hour to just not be around anybody.
• 25:00
  SPEAKER_00: And so, you know, knowing that, knowing what you need and like communicating that to my partner has been very um instrumental in just getting me through those really trying times where I know my window window of threshold is like, or tolerance is just very small.
• 25:15
  SPEAKER_00: Um, so it kind of helps me from not having like a you know mental breakdown or like an outburst or whatever that you know, I'm trying to avoid.
• 25:21
  SPEAKER_00: And I think that's why I'm starting this podcast is like getting to communicate with other other people, other dads, especially about this and you know, kind of converse like what's your tips, what's your hacks, what works for you?
• 25:32
  SPEAKER_00: And I think this is all stuff that we can take and incorporate into our lives.
• 25:35
  SPEAKER_00: So appreciate you sharing that.
• 25:37
  SPEAKER_00: Do you mind if we end with a quick lightning round, just awesome questions and kind of a like a fast response, and then we'll kind of do our close here.
• 25:43
  SPEAKER_00: Is that cool?
• 25:44
  SPEAKER_01: Yeah, definitely.
• 25:45
  SPEAKER_00: All right, cool, cool.
• 25:46
  SPEAKER_00: What is the biggest lie schools tell parents about special education funding?
• 25:50
  SPEAKER_01: Boy, that's that's a tough one up.
• 25:52
  SPEAKER_01: The the easiest thing I I could say is schools, schools do not always have all of the resources they need, but they do have resources.
• 26:04
  SPEAKER_01: And it's usually a question of how those resources are being allocated, and that is also where you want to be very much advocating for your child in terms of what their needs are and how how those resources are being applied.
• 26:17
  SPEAKER_00: Okay.
• 26:17
  SPEAKER_00: Uh, what is one expert piece of autism advice that you completely ignore?
• 26:22
  SPEAKER_01: That that I have personally ignored or that somebody should ignore.
• 26:25
  SPEAKER_00: You know, maybe either one.
• 26:27
  SPEAKER_01: Okay.
• 26:28
  SPEAKER_01: Okay.
• 26:28
  SPEAKER_01: Um You know, I I I I I've I've heard a lot of things in life, but but I think the one that comes out the most is um, you know, um, you're only given, you know, your your your your child was given to you as a gift, you know, your child is a blessing, and and you know, you're you're only given what you can handle.
• 26:49
  SPEAKER_01: I usually respond to that from, you know, being a person of faith, I have one way that I respond to it, but also just being a dad of disability, there's a way that I respond to it.
• 26:57
  SPEAKER_01: But but I I think the thing is that there are a lot of well-intentioned people out there who will say things and don't realize that, well, you know, you know what, look, this is this is just hard, okay?
• 27:07
  SPEAKER_01: And and yes, this, you know, my my son is a gift because he's my son.
• 27:11
  SPEAKER_01: And but but guess what?
• 27:13
  SPEAKER_01: I don't have what I have because I can't handle it, because I can guarantee you there were plenty of days I didn't handle it, right?
• 27:19
  SPEAKER_01: I grew and learned how to handle it and I leaned into it.
• 27:23
  SPEAKER_01: And again, coming from a faith perspective, I I believe that makes you more a person of faith.
• 27:28
  SPEAKER_01: But but essentially, I think there are well many people out there who'll say, well, you know, you just have your child because, you know, your child is is was was just perfectly meant for you.
• 27:36
  SPEAKER_01: Okay, you know, and and you know what?
• 27:38
  SPEAKER_01: Honestly, I believe that.
• 27:39
  SPEAKER_01: That doesn't make my job any less hard.
• 27:41
  SPEAKER_01: And it doesn't mean that, you know, I didn't have bad days because I sure had a lot of them.
• 27:44
  SPEAKER_01: And I had to grow into the person that I needed to be, because I very much was not that person when my son was born.
• 27:51
  SPEAKER_00: Yeah, that's a great piece of advice.
• 27:52
  SPEAKER_00: I sort of hate when people try to, it's almost like they soften the blow or they want to like you said, it's well intended.
• 27:59
  SPEAKER_00: It's it's trying to make you feel better, but it's also like if you only knew what my, you know, if you only walked in my shoes, and I can imagine, you know, your situation in particular.
• 28:08
  SPEAKER_00: Um, people really don't have the bad behind the scenes view that you do of, you know, the days where, like you said, you you feel like you weren't making it and you know how you kind of had to grow as a person to get to where you are and where your son is and all the stuff that goes into that, you know.
• 28:22
  SPEAKER_00: I I just feel like people sometimes will downplay everything.
• 28:26
  SPEAKER_00: And it's for me, it's frustrating.
• 28:27
  SPEAKER_00: I'm sure you know you can kind of relate to that too.
• 28:30
  SPEAKER_00: And so I want to end on this.
• 28:31
  SPEAKER_00: So give me one strict boundary you enforce to protect your own mental bandwidth.
• 28:36
  SPEAKER_00: You kind of touched on this, but I just want to emphasize this point because I think that a lot of dads out there is just like don't know how to handle, you know, getting a diagnosis or you know, dealing with the the situations we talked about.
• 28:49
  SPEAKER_00: So, like, how do you protect your mental bandwidth?
• 28:51
  SPEAKER_00: How do you recharge?
• 28:53
  SPEAKER_00: How do you, you know, kind of keep your head right, going through all the challenges that you've gone through?
• 28:59
  SPEAKER_01: Yeah.
• 28:59
  SPEAKER_01: So my my biggest encouragement is is again, don't do this alone.
• 29:03
  SPEAKER_01: Do do not walk this path alone.
• 29:05
  SPEAKER_01: You're not meant to.
• 29:06
  SPEAKER_01: You don't have to, especially for guys.
• 29:08
  SPEAKER_01: Guys are proud, guys don't want to get personal, you know, and especially with strangers, right?
• 29:15
  SPEAKER_01: That that's the tough thing because many times if you don't already know dads of disability and you're like, well, I'm not gonna go to some group or I'm not gonna meet some guy.
• 29:22
  SPEAKER_01: I don't know him, I don't want to share my life.
• 29:24
  SPEAKER_01: You know what?
• 29:24
  SPEAKER_01: Look, not all of us are ready for that, or or maybe for a big group of guys, but I always say start with one.
• 29:30
  SPEAKER_01: Start with one.
• 29:31
  SPEAKER_01: And you know what?
• 29:32
  SPEAKER_01: If you got nobody, reach out to me.
• 29:34
  SPEAKER_01: And and I'm quite serious about that.
• 29:36
  SPEAKER_01: Like I always say, listen, if you have no one, you could reach out to me.
• 29:40
  SPEAKER_01: I may not be the person that ultimately you're gonna have a relationship with.
• 29:43
  SPEAKER_01: I may pass you along to somebody or introduce you to somebody or a group or an organization, whatever.
• 29:47
  SPEAKER_01: But do not do this alone.
• 29:49
  SPEAKER_01: You know, that that is one of my biggest pieces of advice.
• 29:52
  SPEAKER_01: Using my former teacher brain, ever anybody asks me that, I say it's a 1A, one B conversation.
• 29:57
  SPEAKER_01: One A for me in terms of support for me is my faith as a person of faith.
• 30:02
  SPEAKER_01: My Christian faith is my foundation there, which I get is not for everybody if you are not Christian, religious, spiritual, whatever, but one B is community.
• 30:10
  SPEAKER_01: You must have community.
• 30:11
  SPEAKER_01: You must have people, right?
• 30:13
  SPEAKER_01: Even if it's one.
• 30:14
  SPEAKER_01: Start with one.
• 30:15
  SPEAKER_01: You ain't got nobody, reach out to me.
• 30:17
  SPEAKER_01: If I can help you, great.
• 30:19
  SPEAKER_01: But don't do it alone.
• 30:20
  SPEAKER_01: You're not meant to.
• 30:21
  SPEAKER_01: You can't and you shouldn't.
• 30:22
  SPEAKER_00: Yeah, amen, man.
• 30:23
  SPEAKER_00: I love that.
• 30:24
  SPEAKER_00: Uh so how can people reach out to you?
• 30:26
  SPEAKER_00: Tell us more about where we can find you, follow you, get all your resources you have to offer, and and um stay, stay, stay in tune with what you're gonna do.
• 30:34
  SPEAKER_00: And if you know, it sounds like you have books out and you probably have uh future projects in the works too.
• 30:39
  SPEAKER_00: So give us a little bit uh insight onto all that.
• 30:42
  SPEAKER_01: Yeah, for sure.
• 30:43
  SPEAKER_01: So um you can reach out to me.
• 30:44
  SPEAKER_01: So the easiest place is my website.
• 30:46
  SPEAKER_01: It's just my name, johnfella.com.
• 30:48
  SPEAKER_01: You can see uh a bunch of my other content out there podcasts, videos, presentations, writing.
• 30:53
  SPEAKER_01: I just had a book come out uh in February, which is actually my memoirs of special needs dad called Faith Like My Father, and it's my memoir of being a dad of disability.
• 31:02
  SPEAKER_01: There's a banner link you can click on there to order.
• 31:04
  SPEAKER_01: I also have, I mentioned another great book I was able to contribute to, and this is called Uh Empowering Autistic Voices.
• 31:11
  SPEAKER_01: And again, it's uh I have a a dear friend, Dr.
• 31:14
  SPEAKER_01: Stephanie Holmes, who did that one with Temple Grand and some other folks contributed as well.
• 31:18
  SPEAKER_01: So that's a great book for teachers and you know, uh educators and therapists as well to give them a perspective.
• 31:23
  SPEAKER_01: But again, I'm I'm also on all the socials, so you can reach out to me on Facebook, uh, Instagram, LinkedIn, and just type my name in the Google machine.
• 31:31
  SPEAKER_01: You'll find me.
• 31:32
  SPEAKER_01: Feel free to reach out to me.
• 31:33
  SPEAKER_01: Uh you can connect me th through my website, or again, could connect with me through Facebook or social media.
• 31:37
  SPEAKER_01: Happy to um speak with you there too.