Keynote: The Problem isn't the Player, it's the Playbook: How Having a Child with Autism Changed our Lives - Drs. Matt and Brenda McNiff

Matt and Brenda McNiff Author

04/06/2023 Added

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Thursday PM Keynote

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[00:00:01.860]Thank you.
[00:00:03.540]Well, thank you.
[00:00:05.400]That's very nice.
[00:00:10.080]Thank you guys so much for having us to speak.
[00:00:14.520]My name is Matt McNiff
[00:00:16.013]and we first want to say thank you very much
[00:00:20.430]to the Autism Society of Nebraska
[00:00:22.590]for sponsoring us and asking us to come here
[00:00:26.580]and present and also to the autism,
[00:00:28.856]the State Autism Network, the ASD Network.
[00:00:32.130]They have provided us with so many great things
[00:00:35.130]over the years, including this conference,
[00:00:37.530]so please, can we give them a round of applause.
[00:00:39.437](audience applauds)
[00:00:43.080]Yeah, you want another book?
[00:00:46.170]Just a little bit about us.
[00:00:50.400]My name's Matt McNiff,
[00:00:51.300]this is my beautiful wife, Brenda.
[00:00:53.473]We have two children.
[00:00:55.530]You're a number.
[00:00:56.363]Jackson is (indistinct) years old.
[00:00:58.710]Ben, who is 15 years old. What?
[00:00:59.948]And Ben has autism.
[00:01:02.130]And that's kind of why we're here.
[00:01:03.636]We've been married for 25 years.
[00:01:22.924]We've served in special education
[00:01:25.710]in a variety of different roles over the years.
[00:01:27.382]I'm currently a special education director
[00:01:30.600]for an educational service unit,
[00:01:31.948]Educational Service Unit Number 5 in Beatrice.
[00:01:35.361](audience cheers)
[00:01:36.662]Aw, yeah, we got some people who know that.
[00:01:39.350]I was also a behavior consultant for several years
[00:01:42.571]and before that a special education teacher.
[00:01:46.050]My beautiful wife has taken on
[00:01:48.240]a variety of roles in education.
[00:01:49.484]She is currently the administrator of our ESU,
[00:01:52.440]which makes her my boss, which is great.
[00:01:55.710]It's always nice to work with your spouse, it really is.
[00:02:00.993]Now, we have very, very clear roles.
[00:02:03.270]I just wanna make sure that everybody knows
[00:02:04.980]at work she is my boss
[00:02:06.480]and then we go home,
[00:02:08.520]where she's also my boss,
[00:02:09.780]but it's a different tone at home.
[00:02:12.318]You know what I'm saying.
[00:02:14.305]She has also been a special education director,
[00:02:17.590]where she was also my boss.
[00:02:20.130]She has been a principal,
[00:02:21.270]where she was my boss there, too.
[00:02:22.980]She's super bossy.
[00:02:25.770]We were teachers once.
[00:02:26.880]We were teachers. Together.
[00:02:28.290]She's been a guidance counselor,
[00:02:29.820]a transition specialist
[00:02:31.140]and she's one culinary arts degree away
[00:02:32.942]from running an entire school all by herself.
[00:02:35.700]So, that's fantastic.
[00:02:38.532]We have, we oftentimes will present
[00:02:42.222]on professional topics.
[00:02:44.460]I present a lot on behavior, Brenda on a lot of policy
[00:02:47.172]and politics and those kinds of things in education.
[00:02:51.090]We don't do a presentation about our son very often
[00:02:55.726]and that's the truth.
[00:02:58.084]We're very proud of our son, Ben,
[00:03:03.551]but sometimes it's difficult
[00:03:05.160]to be able to talk about it
[00:03:06.238]and especially when we have a group
[00:03:09.482]of 800 people watching us through it.
[00:03:14.943]But we're going to be presenting on the parent perspective
[00:03:17.119]instead of the professional one today.
[00:03:19.500]Exactly, so as Matt said, I about called him Ben,
[00:03:23.520]as Matt said, you know, we don't talk necessarily
[00:03:27.738]very often, do this presentation,
[00:03:29.556]about our personal lives.
[00:03:31.444]But, you know, as we sat down and we thought
[00:03:34.634]about what kind of profound things we might say to you,
[00:03:39.300]well, I actually thought about the profound things
[00:03:41.844]and he thought about what jokes we might tell tonight.
[00:03:44.404]The important stuff. Yeah, the important stuff.
[00:03:47.370]You know, we really thought about,
[00:03:51.089]our story probably isn't much different
[00:03:54.182]than many other parents out here.
[00:03:59.370]You know, you work day to day
[00:04:01.702]and you work hard to do what you can for your kids.
[00:04:06.540]But, as you notice, as we go through this presentation,
[00:04:09.750]you're gonna see a lot of football.
[00:04:12.270]Yeah, a lot of football. A lot of football.
[00:04:13.222]A lot of football analogies
[00:04:14.502]and that's really to honor Ben
[00:04:16.699]and we'll talk about that a little bit as we go on.
[00:04:19.770]I wanted to name it you gotta have balls.
[00:04:22.758](audience laughing)
[00:04:24.960]But Brenda said that that was not an appropriate thing.
[00:04:28.440]No. I still got it in there.
[00:04:30.598]So, that's on paper. Not appropriate.
[00:04:33.702]Yeah, no, no.
[00:04:35.370]Anyway, we really, you know, again,
[00:04:38.010]our story probably isn't that different
[00:04:40.020]from many of you in here,
[00:04:41.850]but we really, we wanted to talk about
[00:04:44.804]what lessons we've learned over the past 15 years.
[00:04:47.970]So, this is our team 16 years ago.
[00:04:51.750]Yeah. This was 16 years ago.
[00:04:53.370]God, what a cutie, right?
[00:04:54.385]Yes, he is a cutie, very, very much.
[00:04:57.542]I love those glasses that I wore at the time.
[00:05:00.763]I didn't have a great beard.
[00:05:02.610]The one in the middle.
[00:05:04.050]Oh, yeah, he's there, too.
[00:05:05.400]Yeah, he's cute, too.
[00:05:06.233]The one in the middle is the cutie,
[00:05:07.770]so we're were both working at the ESU at this time
[00:05:10.171]and this is Jackson, actually at two, three years old,
[00:05:14.244]something like that. Yeah.
[00:05:16.143]He was talkative, you know, happy kid, really ornery.
[00:05:22.020]He's a carbon copy of his father.
[00:05:24.465]I live with two of them.
[00:05:26.250]Yeah, anybody raising a kid
[00:05:29.435]who's exactly like themselves?
[00:05:31.560]Yeah, oh, man, that's frustrating
[00:05:32.940]because I know exactly what he's gonna do
[00:05:34.350]even before he knows he's gonna do it.
[00:05:36.270]I'm just like, brother, you will never kiss
[00:05:38.190]a girl in high school if you keep that up.
[00:05:39.777]It's gonna be tough.
[00:05:41.790]I know exactly what he's gonna do
[00:05:43.020]and she has to live with two of us,
[00:05:44.561]which is not the easiest thing in the world.
[00:05:50.129]But we were doing pretty well as a team
[00:05:54.317]and so we thought, you know,
[00:05:55.564]everything's great and everything's going on great,
[00:05:58.192]let's bring on a new player, which we did.
[00:06:01.260]We brought on a new player
[00:06:02.093]and we added a new player.
[00:06:03.360]Exactly, so this is the new player we brought on.
[00:06:06.180]This is Ben.
[00:06:07.537]Ben's about 2, 2-1/2 years old here
[00:06:10.246]and really, this is one of my favorite photos of Ben.
[00:06:14.820]I love this picture because I love his eyes in this
[00:06:17.657]and to me this photo of any of the photos
[00:06:21.480]that we've ever taken to us is
[00:06:23.406]our picture of Ben with autism
[00:06:27.360]because the struggle that has always been there
[00:06:30.445]is he doesn't understand what's going on
[00:06:34.009]and with his eyes he's telling me I don't get it,
[00:06:37.698]I don't understand what's happening.
[00:06:40.290]Somebody, for the love of God, please help me
[00:06:43.080]because I don't understand.
[00:06:46.037]And so here's what we got.
[00:06:47.580]We got a player that didn't know the offense,
[00:06:50.670]didn't know the plays that we were calling.
[00:06:52.860]He was difficult to coach
[00:06:55.140]and it was really, really, it was hard.
[00:06:57.390]He didn't know the plays.
[00:06:59.190]Exactly and so, you know early on,
[00:07:02.220]okay, we're educators and we know this stuff.
[00:07:04.890]Early on, we were concerned about his development,
[00:07:09.150]Matt, earlier than I,
[00:07:11.331]but definitely concerned about his development.
[00:07:14.010]You know, he didn't smile the same time Jackson did.
[00:07:18.435]He wouldn't hold a bottle.
[00:07:20.640]He spun, he spun a lot of things.
[00:07:23.811]He struggled with the pincer grasp or to point,
[00:07:28.121]to give eye contact,
[00:07:29.940]all of these kinds of things
[00:07:32.070]that we were seeing. No speech.
[00:07:33.475]No speech. No speech.
[00:07:34.410]Wouldn't follow a gaze, wouldn't follow a point,
[00:07:37.200]all of those things.
[00:07:38.033]Now, there's people in this room,
[00:07:39.330]there's a bunch of educators going, Matt,
[00:07:41.490]that kid has autism
[00:07:42.329]and you're absolutely right, he does,
[00:07:44.730]because those are a lot of stinking red flags, aren't they?
[00:07:47.580]I mean, they're Husker and Nebraska hard core red flags
[00:07:50.760]going your kid's got autism.
[00:07:53.190]Okay, but we didn't necessarily want
[00:07:57.699]to accept it at the time, right,
[00:07:59.406]because here's the deal.
[00:08:01.170]This wasn't supposed to happen.
[00:08:02.250]It wasn't supposed to happen to us
[00:08:03.330]because we were cruising along.
[00:08:05.610]Everything was great.
[00:08:06.467]Everything great was happening for us.
[00:08:08.408]We had a super smart kid already,
[00:08:10.755]who was highly verbal, who was ornery,
[00:08:13.920]who was just like me, so that was great,
[00:08:18.158]and so Ben wasn't necessarily like that
[00:08:20.430]and so we started to ask that question about why.
[00:08:23.340]Now, parents out here, how many of y'all have asked
[00:08:26.250]that question, why?
[00:08:27.750]Why did it happen?
[00:08:28.830]Why did it happen to us?
[00:08:30.390]Why is that?
[00:08:31.223]And we had those same exact things
[00:08:33.657]and we started wondering,
[00:08:35.100]you know, we started to look at ourselves.
[00:08:37.230]You know, was it something that Brenda ate
[00:08:38.910]when she was pregnant?
[00:08:39.750]Was it because there was something
[00:08:41.250]in the water that year?
[00:08:42.420]Was it because, well, frankly, my family
[00:08:44.825]on both sides are kind of weird, okay?
[00:08:48.622]Is it because of that?
[00:08:50.010]Is it because Brenda's family No, no.
[00:08:51.203]Has a lot- Don't say it.
[00:08:53.987]Are great people.
[00:08:55.680]They are great, they are watching.
[00:08:57.038]Is it because they're great people?
[00:09:00.686]They're watching, look at the camera and say that.
[00:09:03.690]Oh, yeah, hi.
[00:09:07.860]Yeah, you know, with everything we knew,
[00:09:10.440]all our education, deep down, certainly,
[00:09:13.920]we probably knew it was autism,
[00:09:16.290]but we didn't wanna label it.
[00:09:18.051]If there was no label, it might not be true.
[00:09:21.210]Maybe, maybe it was 25 years from now,
[00:09:24.046]we'd have just a wonderful story
[00:09:26.399]about remember how Ben, he didn't talk until
[00:09:30.000]he was five years old, but, wow, look at him now.
[00:09:33.150]You know, just one of those,
[00:09:34.230]one of those kinds of story,
[00:09:35.460]so we really didn't want to label it.
[00:09:37.800]And I remember a month in,
[00:09:40.440]I looked at Brenda and I said,
[00:09:42.787]"Brenda, I think Ben has autism."
[00:09:46.530]And I tend to be a little bit of a hypochondriac,
[00:09:49.322]so like a doctor who, like a doctor
[00:09:52.202]who every headache is a brain tumor
[00:09:54.677]or a guy who's a behavior consultant
[00:09:57.210]and who works with kids with autism every day,
[00:10:00.330]every little behavior that he did
[00:10:02.340]was all of a sudden autism to me
[00:10:03.679]and so it's real easy to be able to look at that.
[00:10:07.140]I remember I said to my mother the day after Ben was born,
[00:10:11.587]"Mom, I think that Ben's gonna be my special needs kid."
[00:10:14.490]And she said, "Matthew, don't say that."
[00:10:17.610]But I knew something was different
[00:10:18.810]about Ben from the start.
[00:10:20.850]And so within a year we had an IFSP,
[00:10:24.930]which is the early childhood IEP
[00:10:28.677]and so we were in early intervention services
[00:10:31.680]and by 18 months we got that diagnosis from Monroe Meyer
[00:10:34.860]that said Ben had autism.
[00:10:38.760]And even though I knew for 18 months
[00:10:41.311]with 95% certainty my kid had autism,
[00:10:45.570]that was still a punch to the stomach
[00:10:47.803]and there's parents out there
[00:10:50.190]that I can tell you for sure knew
[00:10:52.590]their kid probably had autism,
[00:10:56.160]but it wasn't until they said it that it hit you.
[00:10:59.445]Because before that, we could just say no.
[00:11:04.080]No, Ben didn't have autism
[00:11:05.760]or maybe he didn't or maybe if he just took
[00:11:07.560]this one pill, all a sudden he would start to communicate,
[00:11:10.069]you know, like it was toe fungus or something
[00:11:12.570]and then, ah, he'd be able to speak.
[00:11:14.640]That was our hope, but we could delude ourselves
[00:11:17.760]before that happened.
[00:11:20.880]And I'll tell you what happened was overnight,
[00:11:25.710]all the hopes and dreams that we thought for our kid,
[00:11:27.510]because as you're holding your baby,
[00:11:28.710]every parent in here knows,
[00:11:29.820]when you're holding your baby,
[00:11:31.020]all of those things that are mapped out
[00:11:32.400]for your kid are right out there.
[00:11:35.820]The wedding that they're gonna have,
[00:11:36.960]going to prom, playing in Little League baseball,
[00:11:39.989]going to summer camp, being able to talk,
[00:11:44.127]having friends, having slumber parties,
[00:11:46.110]having all of those kids over,
[00:11:49.710]gonna be a road scholar,
[00:11:51.150]gonna be a monster truck driver, whatever it is
[00:11:53.250]that your dreams were for your kid,
[00:11:54.900]all of a sudden, oof, we didn't know.
[00:11:57.141]We had no certainty and that is scary
[00:12:02.130]and it was panicky and we didn't know.
[00:12:05.250]We didn't know and so we had to go through
[00:12:07.167]the stages of grief, okay?
[00:12:09.630]We went through denial, we went through anger,
[00:12:12.090]we went through bargaining, we went through depression,
[00:12:14.190]we went through acceptance
[00:12:15.060]and sometimes that was just in an afternoon.
[00:12:18.420]And I'll tell you that anybody who gets
[00:12:20.490]a diagnosis that their kid has a disability
[00:12:22.740]and it doesn't matter whether it's autism
[00:12:24.600]or cystic fibrosis or dyslexia,
[00:12:28.140]you go through those stages
[00:12:30.480]because you don't know what's gonna happen next.
[00:12:34.530]You don't know whether your kid's gonna go to college,
[00:12:36.450]you don't know if they're gonna have all
[00:12:37.460]of those things and all of those hopes and dreams
[00:12:39.570]and so you don't know what the future is gonna be,
[00:12:41.400]so that's really hard.
[00:12:43.620]Now, I'm a fixer.
[00:12:44.460]I had 18 months to accept it,
[00:12:46.079]to go through those stages,
[00:12:47.790]to go, okay, now it's time to be able
[00:12:49.877]to get down to work and, Brenda,
[00:12:52.380]it wasn't as quick for her
[00:12:54.270]because until we got that diagnosis,
[00:12:57.510]Ben didn't have autism.
[00:13:01.050]And so for Brenda she had to go through all
[00:13:03.274]those stages of grief.
[00:13:04.830]I remember the day that he,
[00:13:07.477]that we got the diagnosis,
[00:13:09.990]I started making phone calls.
[00:13:11.700]I called Annette Rocky.
[00:13:13.277]Annette was the regional autism specialist
[00:13:17.546]for Southeast Nebraska where I was
[00:13:19.680]and I knew Annette for a while
[00:13:21.577]and I called her and I asked, "What do we do,
[00:13:23.686]what do we do?"
[00:13:26.430]I asked other friends that were in the business.
[00:13:28.230]I'm lucky enough as a behavior consultant
[00:13:30.690]that I knew different people
[00:13:31.740]to be able to pull from.
[00:13:33.870]Not everybody has that luck.
[00:13:38.790]But we didn't know what was gonna happen.
[00:13:40.159]But we did know that we couldn't just sit back
[00:13:42.762]and do nothing.
[00:13:45.180]That's right, you know, we knew
[00:13:46.901]that our playbook wasn't working.
[00:13:49.482]It looked probably a lot like this.
[00:13:52.383]You know, early on, like Matt said,
[00:13:57.840]early on he suspected, much sooner than I did
[00:14:03.499]or I guess maybe I knew, but I didn't want
[00:14:05.994]to admit it, but I do remember that first IEP meeting,
[00:14:10.815]that first IFSP meeting where now
[00:14:13.685]you're actually seeing it in black and white
[00:14:17.340]and I remember sitting there.
[00:14:19.770]You know, we had been, we are both special educators.
[00:14:22.773]I was a special education director.
[00:14:24.309]I had sat in thousands of IEP meetings
[00:14:28.410]as the administrator.
[00:14:30.900]You know, I'm a parent and okay, the parents are there
[00:14:33.540]and it's great and we're having the meetings,
[00:14:35.910]but now I'm on the other side of the table
[00:14:38.280]and it's way different when you're on
[00:14:40.950]the other side of the table
[00:14:42.060]because they were giving me all the information
[00:14:44.774]that you should in an IEP meeting.
[00:14:47.190]Here's the assessment, here's what we're seeing,
[00:14:49.860]here's the MDT, here's there verification,
[00:14:53.130]but what I wanted to know was, you know what,
[00:14:55.530]is he gonna have friends?
[00:14:57.510]What's he gonna grow up to be?
[00:14:59.670]Is he gonna be bullied?
[00:15:01.740]And it was tough. It was tough.
[00:15:04.890]Yeah, we're pretty independent and proud people,
[00:15:07.980]so asking for help was really hard.
[00:15:11.790]And it probably wasn't a walk in the park
[00:15:13.890]for the district, either.
[00:15:15.931]Thoughts and prayers with Beatrice Public Schools.
[00:15:20.370]Having a special education director
[00:15:21.960]and having a behavior consultant in the meeting,
[00:15:24.763]we had a lot of people around the table
[00:15:26.891]and I heard it today in a session
[00:15:30.565]with the Cougles and they talked about how
[00:15:33.510]as an administrator, it's a pretty small table
[00:15:35.835]and it's a pretty intimate thing,
[00:15:37.320]but as a parent that's a big, big table
[00:15:40.123]and you have all of these people
[00:15:41.955]with all of these degrees ready to go
[00:15:44.460]and ready to be able to talk
[00:15:45.690]to you about how far behind your kid is
[00:15:51.259]and that was difficult to be able to hear.
[00:15:54.090]And so we had to transition to a new playbook,
[00:15:57.365]but what this did is it changed
[00:15:59.190]the way that we looked at the services that we deliver.
[00:16:03.390]It absolutely did because I'll tell you,
[00:16:05.310]educators in here,
[00:16:10.230]we take on anybody that comes through our door, okay?
[00:16:15.630]It doesn't matter who it is.
[00:16:18.330]And respect the dickens out of that,
[00:16:20.811]that is so fantastic that we take anybody who comes.
[00:16:23.970]It is not intimidating that a kid comes in
[00:16:25.825]with autism, what happened?
[00:16:30.150]Nothing.
[00:16:30.983]Oh, great. You just go.
[00:16:33.240]Never mind.
[00:16:34.073]ADHD also hits our family hard.
[00:16:35.293](audience laughing)
[00:16:43.140]When we find out as parents what that is,
[00:16:47.940]the discussion around the supper table
[00:16:49.620]is quite a bit different over that next five weeks.
[00:16:51.480]As educators, when we say a kid has autism,
[00:16:54.030]we go, you know what,
[00:16:55.230]we're gonna rally around,
[00:16:56.130]we're gonna have this strategy,
[00:16:57.150]this strategy, this strategy,
[00:16:58.251]but the conversation that happens
[00:16:59.820]around the supper table after that
[00:17:01.473]are things like what did we do wrong?
[00:17:06.030]Parents blame themselves for a kid having a disability.
[00:17:08.490]It just is part of the bag,
[00:17:09.720]it's just the way it happens.
[00:17:13.110]What are we gonna do?
[00:17:14.940]Who can we get to help?
[00:17:16.440]Those are the conversations that happen.
[00:17:17.820]So, public educators make sure
[00:17:19.646]that you are there for those parents.
[00:17:22.410]When you deliver that news
[00:17:23.957]and I don't care whether it's autism or dyslexia,
[00:17:27.810]I don't care whether it's ADHD,
[00:17:29.460]the conversation is entirely different
[00:17:31.425]and as a parent sitting across the table, it's really hard
[00:17:35.700]and when we use the fancy language
[00:17:37.590]and the big words, that doesn't help at all.
[00:17:41.640]Be there for those parents.
[00:17:45.120]So that brings us to one our first lessons
[00:17:47.361]that we learned.
[00:17:48.840]You know, sometimes, like we said,
[00:17:51.360]you just need a new playbook.
[00:17:53.931]We didn't have the wrong personnel,
[00:17:56.310]we just weren't playing to his strengths.
[00:17:58.740]We needed to discover what those strengths were.
[00:18:01.890]Yeah, and this is why it's so important
[00:18:03.750]to be able to coach our kid because the very first time,
[00:18:07.307]and I'm gonna have you tell this story,
[00:18:09.180]the very first time that we figured out
[00:18:10.441]that we could actually make a difference
[00:18:12.150]and figure out what we were gonna do,
[00:18:13.440]we were high school teachers.
[00:18:14.970]Okay, knowing anything about early childhood
[00:18:17.220]and language at a year, that wasn't easy.
[00:18:20.040]Yeah, you know, really the first win we got,
[00:18:22.980]what I call a win is early on we found out
[00:18:26.134]about a program at the Barkley Center at UNL,
[00:18:30.758]where, you know, they're training speech paths.
[00:18:34.170]That's great.
[00:18:35.010]We need to teach Ben how to speak.
[00:18:37.260]Let's take him there.
[00:18:38.520]And, you know, there they have the two-way
[00:18:41.490]or one-way glass and so they took Ben into the room
[00:18:45.238]and they started working with him
[00:18:47.733]and teaching basically how to share,
[00:18:51.480]to try to draw out that language.
[00:18:54.090]And his mom on the other side of that window,
[00:18:57.291]it was the first time I could watch
[00:18:59.233]and say, oh, my gosh, I could do this.
[00:19:02.730]I could do this at home and try
[00:19:04.758]to help draw out that language.
[00:19:07.062]That's something I can do.
[00:19:08.950]Yeah, so school districts, when you get the chance,
[00:19:11.400]help to coach those parents in early childhood.
[00:19:14.017]Get your kids into early intervention
[00:19:16.920]because we have coaching models all over
[00:19:19.156]the state to be able to get that exact skill right
[00:19:21.960]into the hands of the parents
[00:19:23.160]so that every single day we can get that going.
[00:19:25.890]So, it's so imperative.
[00:19:27.990]And so we needed, we needed new coaches.
[00:19:30.570]We needed new team members,
[00:19:31.830]we needed everybody, we needed applied behavioral analysis,
[00:19:34.800]verbal behavior, social coaching, speech therapy,
[00:19:37.633]we needed the whole thing
[00:19:39.570]and so we were lucky enough
[00:19:40.598]in that phone call I made to Annette,
[00:19:42.369]she put us in touch with a grant,
[00:19:44.880]a grant that had a preschool on the UNL campus
[00:19:47.094]where they were doing an inclusive setting
[00:19:49.825]for kids with autism into a regular preschool
[00:19:52.790]and now that's pretty common,
[00:19:54.535]but it wasn't at the time.
[00:19:57.090]And so we got Ben in there
[00:19:58.123]and what we saw, he exploded with speech,
[00:20:02.453]with language, he learned the alphabet,
[00:20:04.890]he learned his numbers,
[00:20:05.850]he finally started to get friends,
[00:20:07.710]which was excellent.
[00:20:10.080]And so we started to see the effects
[00:20:11.388]of early intervention, we saw the fog starting to lift
[00:20:14.610]and we were able to interact with our son differently.
[00:20:17.580]Exactly, but just as we were getting used
[00:20:19.770]to those plays and running those plays
[00:20:21.603]from that playbook, kindergarten hits.
[00:20:24.785]Oh, my gosh, the transition.
[00:20:27.195]Parents in here, real quick, show of hands,
[00:20:30.417]how many of you at every transition period
[00:20:33.467]you get scared more and more every time it happens?
[00:20:37.371]Absolutely for us it's the same.
[00:20:39.990]Kindergarten, it was the same thing.
[00:20:41.595]When he moved up to junior high, same thing, we worried.
[00:20:45.400]High school, we worried.
[00:20:47.370]And we're gonna worry at the next step.
[00:20:48.990]When he graduates, what are we gonna do?
[00:20:51.570]All of those things.
[00:20:52.530]That's scary to be able to do.
[00:20:54.960]Exactly, so kindergarten wasn't in Lincoln.
[00:20:58.560]We were back in, we're actually
[00:21:01.020]at Tri-County Public Schools.
[00:21:02.065]Go Trojans.
[00:21:03.360]Whoo! Is where we attended kindergarten at.
[00:21:08.389]And I remember talking to Matt during
[00:21:10.680]that transition time that summer.
[00:21:12.186]And talking about oh, my gosh, you know,
[00:21:16.192]how are the kids gonna react to Ben?
[00:21:19.247]Are they gonna be nice?
[00:21:21.180]You know, what are they gonna do
[00:21:22.890]when Ben gets water on his shirt
[00:21:24.154]and has a little meltdown?
[00:21:25.430]Yeah, what's gonna happen
[00:21:26.940]when a kid starts stripping in the kindergarten room.
[00:21:29.273]That's gonna be fun.
[00:21:31.994]Exactly, all those things.
[00:21:33.847]And, you know, you notice, though,
[00:21:37.740]I wasn't asking, gosh, I wonder if he's gonna learn
[00:21:40.186]his ABCs and how to do math.
[00:21:44.101]What I was asking is, is he gonna make friends?
[00:21:47.765]Are the other kids gonna be nice?
[00:21:50.280]Certainly, it's great, math and reading,
[00:21:52.860]but every parent, is my kid gonna have friends?
[00:21:57.840]Yeah.
[00:21:58.710]And so we come to our next lesson.
[00:22:01.890]Right, focus on the fundamental?
[00:22:05.040]We've learned this numerous times
[00:22:08.040]throughout the last 15 years with Ben.
[00:22:11.098]You know, we look at all different kinds of things.
[00:22:15.237]We're researchers by trade,
[00:22:17.820]and you do, you can go down rabbit holes looking at
[00:22:20.549]what might work, what might not work.
[00:22:23.760]But we learned that the evidence-based programs
[00:22:28.770]and curriculums worked, they moved the ball forward.
[00:22:32.730]And like with sports, consistently works,
[00:22:35.970]practice works, hard work works.
[00:22:38.430]Okay, we learned that we can fun
[00:22:41.067]the fumbleroosky several times a game
[00:22:43.950]in order to be able to make any progress
[00:22:45.630]because trick plays don't work.
[00:22:49.980]But that didn't keep us from looking
[00:22:52.027]into those trick plays, okay?
[00:22:54.123]It's easy to fall into the trap of trick plays
[00:22:57.557]and I'll talk a little bit more
[00:22:59.910]because we read everything that we could have,
[00:23:02.464]we could put our hands on
[00:23:04.426]when it came to autism because as soon as we got that,
[00:23:07.040]and parents, you know, you start looking at everything.
[00:23:10.325]You start with Wikipedia and then all of a sudden,
[00:23:13.590]you're down some rabbit hole of we could cure
[00:23:17.940]your autism with B12 shots,
[00:23:20.160]just come and see us down at the clinic, right?
[00:23:24.210]And you're hopeful and I will you, teachers
[00:23:26.790]and educators, you don't understand
[00:23:28.373]until you in that role how much as a parent, you just,
[00:23:32.820]you wanna be able to give your kid every single shot
[00:23:35.700]and you know, you know that it's gonna be difficult
[00:23:40.884]for your kid and so you wanna be able
[00:23:43.470]to give them every opportunity that you possibly can, so.
[00:23:48.030]Right, you really start down the what ifs.
[00:23:50.340]You know, the what if, you know, what if,
[00:23:52.702]what if he does swim with dolphins four times a day,
[00:23:57.180]three days a week in water that's 70 degrees.
[00:23:59.970]Well, that will cure the autism, I know it.
[00:24:02.610]Okay, but, I mean, you do,
[00:24:03.780]you go down the what ifs.
[00:24:05.310]The what if we do B12 shots,
[00:24:07.110]like you said, or specialized diets
[00:24:11.220]or, you know, oxygen therapy, all these different things.
[00:24:15.551]You know, you read everything you can get
[00:24:17.190]your hands on, really.
[00:24:18.300]Yeah, from research to nonsense,
[00:24:20.010]we read the Jenny McCarthy book
[00:24:22.710]and Jenny McCarthy, if you don't know who she is,
[00:24:24.614]she is a Playmate who has a son with autism.
[00:24:27.540]We also read Temple Grandon's book about autism.
[00:24:30.780]Now, I am here to tell you,
[00:24:32.991]read Temple Grandon's book on autism.
[00:24:38.220]God bless Jenny McCarthy,
[00:24:40.290]but I don't think she has an advanced degree in that.
[00:24:43.800]Okay, just me.
[00:24:44.853]I don't know, I could be wrong, okay.
[00:24:48.927]You do, you really, you look at what's
[00:24:51.700]this Proloquo2go and ABA therapies
[00:24:54.408]and, you know, the visual schedules.
[00:24:57.930]I mean, on and on and on.
[00:24:59.820]It really is a lot and it can be very overwhelming
[00:25:02.536]in the beginning and, you know,
[00:25:05.130]it turns out yes, Ben had some food allergies
[00:25:08.310]and he had a specialized diet,
[00:25:10.260]but that didn't cure autism.
[00:25:11.820]Yeah, it changed his behavior a little bit,
[00:25:14.700]but Ben still has autism, okay?
[00:25:18.930]We learned that some of those things we had
[00:25:21.360]to investigate just for our peace of mind
[00:25:23.760]because we didn't wanna get to when Ben was 15 years old
[00:25:26.790]or 16 years old and go, God,
[00:25:30.330]what if we did six-day a week B12 shots with him,
[00:25:33.360]but usually it was us looking
[00:25:34.376]at each other going are we really going
[00:25:36.719]to do six-day a week B12 shots
[00:25:41.220]and that's supposed to be the cure?
[00:25:42.720]Are we really gonna do fecal transplants
[00:25:45.236]with our son and put his poop in a blender
[00:25:49.097]and so all of that and probiotics and all that stuff.
[00:25:51.941]So descriptive.
[00:25:53.303]You know, if you don't know what it is.
[00:25:55.205]Look at, no, don't look it up.
[00:25:58.778]It's disgusting.
[00:26:01.440]What we learned was all of the things
[00:26:03.517]that have evidence were the things that worked.
[00:26:06.360]Everything that didn't have evidence didn't work.
[00:26:09.000]And so that's why it's so important,
[00:26:10.860]but school people understand when parents are coming
[00:26:13.050]to you with these ideas that you go, holy cow,
[00:26:16.378]that doesn't make any sense at all,
[00:26:19.380]it's not because you have a parent
[00:26:21.408]that thinks that that's exactly
[00:26:23.400]the way they wanna go,
[00:26:24.233]you have a parent that is saying I don't know what to do,
[00:26:27.213]please help me and tell me the things
[00:26:29.970]that I need to do to help my child.
[00:26:32.130]That's what they're saying.
[00:26:33.540]They may not actually believe
[00:26:35.010]that swimming with dolphins is gonna be
[00:26:36.420]the thing that cures their kid,
[00:26:38.010]but in the absence of everything else
[00:26:40.620]and not knowing,
[00:26:42.060]they're gonna take the risk on dolphins.
[00:26:44.220]You know why?
[00:26:45.660]Because they're parents
[00:26:46.693]and that's what we do as parents.
[00:26:49.548]Well, that brings us to our next lesson.
[00:26:51.834]You just take one game at a time, you really do.
[00:26:57.060]One game at a time.
[00:26:58.050]You keep kind of plugging away.
[00:27:00.367]There's gonna be transitions.
[00:27:01.711]There's gonna be up and downs,
[00:27:03.119]but you take one game at a time.
[00:27:05.730]And there's a lot of things
[00:27:06.570]that happen off the field.
[00:27:08.340]There are, you know, life.
[00:27:10.290]Life does happen.
[00:27:11.190]I remember when we first got the diagnosis,
[00:27:14.943]the verification and, you know,
[00:27:17.700]your world is just, it is,
[00:27:20.010]it literally is autism all the time.
[00:27:22.620]You know, when Matt said we did research,
[00:27:24.480]by God, we did research.
[00:27:26.160]And your kind of living and breathing that.
[00:27:29.520]Then all of a sudden it kind of hit us,
[00:27:30.930]oh, my gosh, we do have another child
[00:27:32.610]that like, I don't know,
[00:27:34.110]maybe we should pay attention to, you know?
[00:27:37.815]You know, there's doctors' appointments
[00:27:40.397]and there's laundry and there's a job.
[00:27:42.570]I have a job, I should probably do that job.
[00:27:44.407]You know, so life does happen.
[00:27:47.266]Yeah, stressful things happen all the time.
[00:27:50.040]Brenda's family, we had to go see them all the time.
[00:27:53.430]Holidays, monies, we have another kid, right.
[00:27:57.527]And so every day, oh, I went the wrong way.
[00:28:00.990]Okay, there we go.
[00:28:02.220]But things happen off the field.
[00:28:03.607]As we found out that Ben had autism, guess what,
[00:28:06.930]I got cancer.
[00:28:08.040]Okay, I got cancer.
[00:28:08.878]We had doctors' appointments.
[00:28:11.610]We both got our doctorates since Ben's been born.
[00:28:16.920]We had family members pass away
[00:28:18.750]and it's stressful to be in that situation
[00:28:22.235]and also to keep a marriage, you know.
[00:28:26.013]And there's a lot of people, yeah,
[00:28:28.890]wait did you nod your head? No.
[00:28:30.445]You're like yes, absolutely.
[00:28:33.063]Yes. Yes.
[00:28:34.110]Divorce rates, okay, so just some statistics
[00:28:37.650]with divorce rates.
[00:28:39.110]Okay, so 50% of marriages just end.
[00:28:44.280]It doesn't matter what it is, but 50%.
[00:28:47.460]There's a 20% increase on that
[00:28:49.629]for graduate degree seekers
[00:28:51.990]and we have five graduate degrees between us
[00:28:54.643]and a 20% chance of divorce
[00:28:56.989]for couples that have a kid with a disability.
[00:29:00.630]So, if my math is correct,
[00:29:02.700]we have 170% chance of a divorce, honey.
[00:29:06.900]All right.
[00:29:07.733]It's been a great 25 years, it's been nice to know you.
[00:29:15.210]We do all the research apparently.
[00:29:16.770]Yeah, all the research.
[00:29:18.390]We do, you have to provide joy on your family.
[00:29:23.070]Autism can absolutely suck up every part
[00:29:25.863]of your being.
[00:29:27.270]Have that joy.
[00:29:28.530]Go do things.
[00:29:29.850]Take your kid out into the community.
[00:29:31.650]We call it autism awareness
[00:29:32.872]when Ben has a meltdown in public,
[00:29:34.707]which is fantastic.
[00:29:36.930]Guess what, he has autism,
[00:29:38.250]you ever seen one of those before?
[00:29:40.380]Yeah, that's a meltdown, nice to see you, okay.
[00:29:45.450]Exactly, so that brings us to our next lesson
[00:29:48.573]and that is there's no I in team.
[00:29:52.020]We could not do what we do without
[00:29:55.272]the, and I would easily say hundreds of people
[00:29:59.610]that have helped us over the last 15 years.
[00:30:03.510]It really isn't just us.
[00:30:05.850]There are so many others out there
[00:30:07.770]that have helped us along the way.
[00:30:09.690]For the family members that are out there
[00:30:11.370]because there are parents out there
[00:30:13.192]that also have aunts and uncles in this room
[00:30:15.535]or on camera right now.
[00:30:19.230]We have aunts and uncles.
[00:30:20.610]We have grandparents.
[00:30:22.080]They're all there supporting you.
[00:30:23.400]I wanna say from the bottom of our heart, thank you.
[00:30:26.310]We are so grateful for you.
[00:30:27.780]You are our shoulder to cry on.
[00:30:30.030]You are our cheerleaders when we have successes
[00:30:32.370]with our our children and our family.
[00:30:34.800]We could not do this without you.
[00:30:37.500]For the educators out there,
[00:30:39.780]you spend 180 days a year helping children.
[00:30:45.630]You are fantastic in my eyes.
[00:30:48.450]The government will tell you that you are inadequate.
[00:30:52.380]You will be viewed with suspicion by some,
[00:30:55.830]but I am going to tell you right now,
[00:30:59.190]to me you are angels in training.
[00:31:01.590]I wanna say thank you.
[00:31:03.030]Because of what you do, my son can talk to me.
[00:31:07.320]I can communicate with my child
[00:31:08.970]because of the work that you do.
[00:31:11.040]When he comes home every night, he can do homework
[00:31:14.700]because of the things that you do.
[00:31:15.960]My son can write because of the things that you do.
[00:31:18.720]I am eternally grateful for the stuff that you do.
[00:31:21.690]Thank you for that.
[00:31:22.931](audience applauding)
[00:31:31.560]Before we talk about all of the different people,
[00:31:34.152]I do wanna take a moment to talk about Ben.
[00:31:36.930]That's why we're here, right?
[00:31:38.589]And so we often get the question, you know,
[00:31:42.750]what kind of autism does Ben have?
[00:31:44.460]You know, how severe is it?
[00:31:46.110]And like everything, it kind of depends.
[00:31:51.780]Annette told me a long time ago,
[00:31:53.459]when you see one kid autism,
[00:31:55.165]you've seen one kid with autism, right.
[00:31:58.088]We could have a bumper sticker at this point
[00:32:01.331]I've heard it so many times,
[00:32:02.760]but it's the absolute truth.
[00:32:07.050]And so for Ben, if I'm looking at an autism spectrum
[00:32:09.843]of Sheldon Cooper to Rain Man
[00:32:13.200]he's probably a little bit closer to Rain Man over here
[00:32:16.029]and so we do have a video of Ben.
[00:32:18.483]On this video, this was taken about a year ago
[00:32:22.347]and we were talking about safe and unsafe things.
[00:32:25.710]Okay, let's talk, Ben.
[00:32:27.321]We stay safe.
[00:32:28.330]Yeah, let's talk about safe
[00:32:30.000]and unsafe things.
[00:32:31.110]So, what is a safe thing?
[00:32:33.900]Like a coin, like a loofah.
[00:32:36.360]Coins and loofahs are safe, okay.
[00:32:38.220]What are unsafe?
[00:32:39.720]A coin, loofah.
[00:32:41.376]No, unsafe. What's unsafe?
[00:32:45.240]Sledgehammer, a locust tree on chain.
[00:32:49.183]A sledgehammer is unsafe, that's right.
[00:32:51.990]And locust trees are unsafe because why?
[00:32:56.023]It have pokies.
[00:32:57.045]It has pokies.
[00:32:58.048]They have thorns.
[00:32:59.052]They have thorns.
[00:33:00.871]And like banana and-
[00:33:05.610]Going back on safe things, okay.
[00:33:07.110]So, safe thing a banana.
[00:33:09.090]And what else is safe?
[00:33:12.090]A candy cane.
[00:33:13.320]Okay, give me two unsafe things now.
[00:33:17.070]Like a, like an anchor.
[00:33:22.110]Anchors, why are anchors unsafe?
[00:33:24.120]Because it hit.
[00:33:26.460]Because it hits.
[00:33:27.720]Yeah.
[00:33:28.553]It hits things.
[00:33:29.386]Oh, it hits like cartoons over the head
[00:33:31.387]with an anchor?
[00:33:32.640]Yeah, he was really into SpongeBob at the time.
[00:33:35.460]What's another unsafe thing?
[00:33:38.299]A falling piano.
[00:33:39.771]A falling piano is an unsafe thing.
[00:33:42.390]What else is an unsafe thing?
[00:33:44.760]Like a radioactive.
[00:33:46.440]Radioactive, you said another thing earlier.
[00:33:49.680]After radioactive, what's that.
[00:33:53.269]A urinal cake.
[00:33:54.277]A urinal cake is unsafe
[00:33:55.919]because it has a lot of germs.
[00:33:58.499]So, the funny things that sometimes happen
[00:34:00.954]when you have a kid with a disability,
[00:34:03.690]we were in a movie theater and we went
[00:34:05.220]to the bathroom afterwards
[00:34:06.510]and Ben looked down and he said, "What that is?"
[00:34:09.900]So, he pointed at a urinal cake.
[00:34:11.740]And I said, "That's a urinal cake."
[00:34:13.380]And he looks up and he goes, "Cake?"
[00:34:14.735]And I'm like, "No, no, no."
[00:34:16.698]No. No.
[00:34:18.272]No, no. It's unsafe.
[00:34:20.820]Yeah, so we had to explain that cakes
[00:34:23.311]from urinals are unsafe things
[00:34:27.855]because of the germs that they had.
[00:34:29.940]I didn't want him walking out chewing
[00:34:31.440]on a pink hockey puck.
[00:34:37.110]Ben has his obsessions like most kids with autism.
[00:34:41.210]He loves music, but what he really loves
[00:34:44.065]are letters, shapes and numbers, so he's hyperlexic.
[00:34:48.360]So, he loves those things
[00:34:50.010]and we'll talk about that a little bit more,
[00:34:51.870]but that's where his specific interest lies
[00:34:54.150]and so we mentioned that he loves football,
[00:34:57.360]but he doesn't love football
[00:34:58.470]because of the plays and all that.
[00:35:00.837]He loves football because there's colorful jerseys
[00:35:04.260]with big numbers all running around on a field
[00:35:07.109]that has a whole bunch of numbers
[00:35:09.180]and letters down the side.
[00:35:10.890]He absolutely loves it
[00:35:12.090]and he loves the shape of the football.
[00:35:14.610]He also loves "Wheel of Fortune."
[00:35:16.507]"Wheel of Fortune" is his,
[00:35:17.820]it has a big spinning colorful disc
[00:35:21.240]that happens and then letters
[00:35:22.860]that appear out of nowhere.
[00:35:25.680]It's fantastic, he loves it.
[00:35:27.420]We can't miss 6:30 "Wheel of Fortune."
[00:35:30.840]We just can't.
[00:35:31.950]We have to prep him if we're gonna be away.
[00:35:34.837]We're gonna record it.
[00:35:36.160]We can watch it when we get home
[00:35:38.430]and he has to be able to see.
[00:35:39.960]He has a favorite letter.
[00:35:40.950]Anybody else have a favorite letter?
[00:35:42.420]His is W. It's W.
[00:35:44.940]Yeah, so, but we have had a ton
[00:35:48.694]of different people.
[00:35:50.100]Some of these people are in the room today.
[00:35:52.950]I wanna talk about this lady, but not right now.
[00:35:55.830]This is his kindergarten teacher
[00:35:57.750]and I'm gonna talk about her in just a little bit,
[00:36:00.360]but in here we have, we have autism specialists.
[00:36:03.883]We have preschool teachers.
[00:36:05.940]We have a young Annette right there
[00:36:10.240]with a Laura Maddox.
[00:36:12.651]All these people have helped, speech paths,
[00:36:15.150]OTs, preschool teachers, his current speech pathologist.
[00:36:18.840]Now, I wanna mention this lady on your left.
[00:36:22.620]The lady on the left is a para educator.
[00:36:24.513]Her name is Lynette.
[00:36:26.460]Do we have any para educators in this room right now?
[00:36:29.550]If so, please raise your hand.
[00:36:32.520]I love you guys.
[00:36:33.878](audience applauding)
[00:36:41.610]Para educators are most oftentimes
[00:36:43.350]the most underpaid in the school.
[00:36:45.300]They get the least amount of training
[00:36:47.580]and they're asked to work with the hardest kids
[00:36:49.680]in the entire school.
[00:36:51.480]God bless you guys.
[00:36:52.374]With Lynette, she has been with Ben since kindergarten.
[00:36:55.860]Every summer, she comes over
[00:36:57.281]and works as our support system for Ben
[00:37:00.327]while we're at work.
[00:37:02.220]And she brings in friends.
[00:37:03.660]She takes him to movies, they go to the pool.
[00:37:05.665]They go out and do activities.
[00:37:07.560]They do all of these different social activities.
[00:37:09.990]They read every summer and it's fantastic.
[00:37:12.780]The work that she does,
[00:37:13.800]we could not be where we are without Lynette
[00:37:18.210]and we are so eternally grateful for her.
[00:37:20.400]We are eternally grateful for her
[00:37:22.350]and for that kindergarten teacher
[00:37:24.510]because if they did nothing else after
[00:37:27.510]the kindergarten year,
[00:37:29.760]they changed our lives forever.
[00:37:32.490]When Ben first got in the kindergarten classroom,
[00:37:35.910]he didn't look or act like any of the other peers.
[00:37:38.880]He didn't talk a whole lot.
[00:37:40.156]He screeched.
[00:37:41.310]He would have meltdowns.
[00:37:42.360]He'd jump off chairs.
[00:37:43.361]He'd jump on trampolines.
[00:37:45.120]He'd throw balls across the room.
[00:37:46.710]He would do all of this stuff
[00:37:47.910]and so the kindergartners, rightfully so,
[00:37:50.190]walked up to the teacher and walked up to Lynette
[00:37:52.290]and said, "What's wrong with Ben?"
[00:37:56.160]And what they said next changed our life
[00:37:58.560]and the trajectory of our kid forever and ever
[00:38:02.310]because they said, "Nothing."
[00:38:04.470]They said, "Nothing is wrong with Ben."
[00:38:07.320]Well, that did not compute with the six-year-old mind
[00:38:09.995]because he was jumping off the table at that point.
[00:38:14.910]So, they sat them all down
[00:38:16.110]and they said, "Ben has autism
[00:38:17.610]and here's what autism is.
[00:38:19.170]Ben is gonna struggle throughout his life
[00:38:21.480]to make friends.
[00:38:23.400]Ben is gonna struggle to be able
[00:38:25.230]to get through school.
[00:38:26.063]Ben needs a support system
[00:38:27.990]and they said will you guys be his support system?"
[00:38:30.540]And everybody in that class on that day said yes.
[00:38:35.760]And because they said yes on that day,
[00:38:38.700]they took that all the way
[00:38:39.990]through elementary school
[00:38:41.130]and they're taking it all the way
[00:38:42.240]through junior high
[00:38:43.260]and they're gonna take it all the way through high school
[00:38:45.060]because the amount of support
[00:38:46.145]that those kids devoted themselves to
[00:38:48.540]at five and six years old to support my child,
[00:38:52.605]I'm grateful forever and ever
[00:38:54.570]and it's because two adults
[00:38:57.240]in a classroom said nothing is wrong with my kid.
[00:39:02.850]And that means the world.
[00:39:04.961]We have a million over people that have helped.
[00:39:07.819]That guy right there, he's a principal.
[00:39:11.010]He should not be around children, look at him.
[00:39:12.750]He just jumped, he jumped right on top of those kids.
[00:39:18.952]That's actually Jesse Groenmeyer
[00:39:21.207]and what Jesse does is he creates
[00:39:23.070]a school environment that says every single kid deserves
[00:39:26.100]to have a spot in that classroom.
[00:39:28.740]He creates a culture where he says every kid belongs here
[00:39:32.130]and it means the world.
[00:39:34.113]We have special education teachers.
[00:39:35.990]We have people in this room right now
[00:39:37.650]as behavior consultants,
[00:39:38.730]there's Kern, occupational therapist.
[00:39:41.220]We have a babysitter that comes over
[00:39:44.801]that he thinks by the way is super duper cute.
[00:39:49.153]He runs from her every time she says hi, it's great.
[00:39:54.510]Transition specialist, his current SpEd teacher,
[00:39:57.570]his future SpEd teacher.
[00:39:59.190]The para that goes with him at track.
[00:40:01.350]We have this guy, his name is Brad.
[00:40:03.937]We're gonna talk about him later.
[00:40:05.558]Just remember he looks sharp in a suit, okay?
[00:40:09.780]His music teacher.
[00:40:10.770]We'll talk about him, too.
[00:40:12.150]And we have family members
[00:40:13.569]and all of these people are our support system
[00:40:16.444]and we're so grateful.
[00:40:17.850]Here's Brenda's sisters around the table at coffee.
[00:40:20.541](audience laughing)
[00:40:23.370]Really.
[00:40:30.090]I know you're watching.
[00:40:33.810]This is actually her family, my parents.
[00:40:36.209]But this is his class
[00:40:37.873]and this picture was taken about a year ago.
[00:40:41.393]I have a bunch of different stories
[00:40:43.441]that I could tell about these kids,
[00:40:46.890]but because of that one thing,
[00:40:49.050]they taught other kids in the school how
[00:40:51.480]to be able to treat Ben,
[00:40:52.530]but not just how to be able to treat Ben,
[00:40:54.600]but how to be able to treat the other kids like Ben
[00:40:57.750]in the school, so the class that was under them had
[00:41:00.240]a kid with autism and that class did the same thing
[00:41:03.090]and they do the same thing
[00:41:04.170]and they do the same thing and it passes down
[00:41:07.350]because they have a classroom full,
[00:41:08.599]they have a class full of role models
[00:41:10.740]and they are heroes of mine for what they do
[00:41:12.987]and they don't even know it.
[00:41:15.750]What they do, they're grown ups
[00:41:18.030]because of the work that they do.
[00:41:20.760]So, people like this kid who's in his circle
[00:41:24.066]of friends group.
[00:41:25.380]He's been in his circle of friends group
[00:41:27.060]since the elementary year.
[00:41:28.072]Or this kid, who is Ben is in the bathroom too long raises
[00:41:30.871]his hand and said, "Ben's been in the bathroom too long."
[00:41:34.800]And I go and check on him, make sure he's okay.
[00:41:38.010]Or maybe it's this girl who mother hens him so much.
[00:41:41.400]She corrals him.
[00:41:42.960]I love this girl, she's so awesome.
[00:41:44.745]When Ben misses school, guess what?
[00:41:47.610]They send videos, "Ben we miss you."
[00:41:50.025]These two girls who are in his circle of friends.
[00:41:52.680]The one your right asked Ben to go
[00:41:58.065]to the junior high dance for the past two years.
[00:42:01.758]Yeah, I know, right?
[00:42:04.254]Oh, my God, how am I supposed
[00:42:05.916]to get through this presentation, okay.
[00:42:09.660]That's why I have the-
[00:42:10.650]Yeah, that's why the, oh, yeah.
[00:42:11.687]See, there. Oh, thank you.
[00:42:16.170]Story about this young man, Zack.
[00:42:18.900]Zack was driving by our house about a year ago
[00:42:22.110]on July 2nd and he knew that Ben's birthday
[00:42:25.710]was on July 3rd and he goes,
[00:42:27.097]"Mom, Mom, Mom, Mom, Mom, can we stop
[00:42:28.297]and wish Ben a happy birthday."
[00:42:30.089]And she's like, "Zack, come on, we gotta keep moving.
[00:42:32.859]We gotta get home."
[00:42:33.860]And she goes, "Please, please, please, please,"
[00:42:36.150]and so he stops and he goes over
[00:42:38.985]and he says hi to Ben.
[00:42:40.170]Well, Ben wasn't expecting Zack in his backyard,
[00:42:42.396]so he runs off.
[00:42:45.270]And so Zack is talking,
[00:42:46.905]Zack finds him, talks to him
[00:42:49.200]and he's just giggling
[00:42:50.160]and Zack comes over and he goes,
[00:42:52.807]"What kind of fireworks does Ben like?"
[00:42:54.387]And we go, "Well, Ben's not a huge fan of fireworks,
[00:42:57.553]you know, it's kind of loud."
[00:43:00.156]I said, "If there's anything that he really likes,
[00:43:02.310]he likes the ground displays,
[00:43:03.600]he likes the fountains and cones
[00:43:05.160]because they don't make a ton of noise,
[00:43:07.110]but they're bright colored.
[00:43:07.943]He kind of likes those kind of things."
[00:43:09.780]And he goes, "Oh, okay," and so they left
[00:43:11.460]and we didn't think much of it.
[00:43:12.780]And then an hour later,
[00:43:13.652]Zack and his mom come back with two big bags
[00:43:16.500]and they're loaded with all of these fountains and cones.
[00:43:21.120]And not like the little dollar things.
[00:43:22.980]I mean, they're like legit
[00:43:25.260]and I go, "Holy cow, this is too much.
[00:43:26.910]What can I pay you for that?"
[00:43:29.190]And his mom goes, "No, Zack was very insistent."
[00:43:31.470]Zack's sister ran a fireworks stand
[00:43:33.630]and so they went and Zack paid for it out
[00:43:35.610]of the money that he got with the task league
[00:43:38.790]and it was very important for him
[00:43:40.110]to be able to buy that birthday gift for Ben.
[00:43:42.420]And I'm here to tell you for the first time,
[00:43:45.450]Ben shot off fireworks.
[00:43:47.760]He had never shot off fireworks in 14 years of his life,
[00:43:50.373]but because Zack brought that to him, he did.
[00:43:55.170]He experienced something that every kid
[00:43:56.903]should have that opportunity to be able to do.
[00:43:59.430]But I will tell you that every single one of those kids,
[00:44:01.320]I have a story just like that
[00:44:03.390]because of the things that they do
[00:44:04.830]and we're so grateful.
[00:44:06.930]Right, so this is Ben
[00:44:08.105]with just a sampling of the fireworks there.
[00:44:11.177]He was very proud when he got those.
[00:44:13.920]And like Matt said, he did shoot off fireworks
[00:44:16.169]for the first time, in his W shirt no less.
[00:44:19.337]In his W shirt.
[00:44:21.150]His para got him that in purple
[00:44:22.919]because she has no taste in teams
[00:44:26.100]and she likes K State.
[00:44:29.769]She's perfect in every way except she has a dumb team, okay?
[00:44:37.129]I want to take a moment to talk
[00:44:40.328]about Ben's biggest fan
[00:44:42.398]and this is his older brother.
[00:44:47.820]Jackson has always been his protector.
[00:44:50.910]Jackson has always been Ben's friend.
[00:44:53.577]When Ben didn't have anybody else,
[00:44:55.890]Jackson was there.
[00:44:57.780]Jackson was there.
[00:44:58.613]He gets him to school every day,
[00:44:59.940]he walks him into school.
[00:45:01.012]He makes sure that he's okay.
[00:45:03.486]He tells on him, sure.
[00:45:05.790]He's still his brother, but he's pretty patient,
[00:45:09.332]most of the time.
[00:45:10.334]Again, he's still his brother.
[00:45:14.070]I will tell you, I tell you this
[00:45:15.870]because being a sibling of somebody
[00:45:18.780]with a disability or somebody with autism isn't easy
[00:45:23.580]because oftentimes our lives revolve around Ben.
[00:45:28.050]That if it's 6:25 and we aren't home
[00:45:30.644]and we have the meltdown about what are we gonna do
[00:45:34.313]because "Wheel of Fortune" is coming on
[00:45:36.360]and everybody's looking at us in the store.
[00:45:39.840]Jackson always is very kind and patient
[00:45:43.410]with those kind of things.
[00:45:47.160]And he misses out on things because of Ben.
[00:45:52.830]And that's not always easy
[00:45:53.940]and we try to do our very best
[00:45:55.500]to give some equal time
[00:45:57.060]and to give those things
[00:45:57.990]that Ben normally wouldn't be able to do.
[00:46:00.240]We give some of those things to Jackson
[00:46:01.915]and give those opportunity,
[00:46:04.110]but what Jackson misses out on,
[00:46:06.334]he is gaining in empathy and kindness and understanding
[00:46:10.470]for others and that's what we want our kids
[00:46:13.001]to grow up to be like.
[00:46:15.150]So, for Jackson, we are very grateful
[00:46:17.908]for all of the things.
[00:46:19.320]Jackson's going to be going off to college next year
[00:46:21.390]and so the next transition that's scary
[00:46:24.436]is also what do we do
[00:46:26.846]when we don't have older brother around.
[00:46:31.110]That takes us to our next lesson that we've learned.
[00:46:34.801]And a lesson that we've learned time
[00:46:37.530]and time and time again
[00:46:39.570]and that is to play to their strengths.
[00:46:43.200]Play to their strengths.
[00:46:44.809]Really look at the world through their eyes if you can.
[00:46:51.180]A long time ago, when we were at this conference
[00:46:53.428]as educators and as parents,
[00:46:55.988]we learned this room, presume competence
[00:46:59.100]and his resource teacher was here at that time, too,
[00:47:03.270]and my gosh, she-
[00:47:05.050]She beat us about the head with that phrase.
[00:47:07.560]She did.
[00:47:08.880]But that's okay, that's okay.
[00:47:10.950]Because, you know, as a parent you're their protector
[00:47:13.590]and so oftentimes I'm like oh, Ben can't do that.
[00:47:16.170]He can't do that.
[00:47:17.880]And she's like no, no.
[00:47:18.857]We're gonna presume competence.
[00:47:21.750]Assume he can and if he does great
[00:47:26.310]and if he can't, you know what, we'll teach him,
[00:47:29.250]but let's just assume he can do it first.
[00:47:31.230]We have to presume that competence
[00:47:32.850]and, today, Ben is in most of the classes
[00:47:35.902]with his peers.
[00:47:36.926]He does have some resource time,
[00:47:39.300]but in most of the classes, he's in with his peers
[00:47:42.420]and he is able to maintain with modifications.
[00:47:45.840]Some things are more difficult than others,
[00:47:47.610]but he's able to maintain.
[00:47:49.524]Had he been at a different school
[00:47:53.730]that didn't have those expectations,
[00:47:55.390]had it been different parents,
[00:47:57.469]maybe it would have been different
[00:48:00.029]and Ben would've been in a different classroom
[00:48:01.980]where he underachieved,
[00:48:03.750]but because the school said he belonged here
[00:48:06.450]and they expected more, they got more.
[00:48:10.230]We should expect more out of our kids with autism.
[00:48:13.020]We should expect more out of our kid with any disability
[00:48:16.500]because if they couldn't do it
[00:48:18.360]and they lived by this mantra,
[00:48:19.527]if he can't do it, we're gonna teach him.
[00:48:22.279]So, never tell me that a kid can't do something
[00:48:24.903]because, dang it, we're teachers.
[00:48:27.480]We are teachers.
[00:48:28.380]We can teach our kids how to be able to do things.
[00:48:31.890]If they can't do it, try it.
[00:48:35.400]Ben oftentimes exceeds our expectations
[00:48:38.237]and we don't even know it.
[00:48:42.077]For example, okay, when Ben was in the fifth grade
[00:48:46.749]we were riding home and we had a song on the radio
[00:48:49.470]and we were just listening
[00:48:50.550]and Ben said, "That song is C."
[00:48:53.550]And we go, "What?"
[00:48:54.397]"That song a C."
[00:48:55.538]Well, Ben says weird stuff sometimes,
[00:48:57.735]so we don't necessarily understand
[00:48:59.485]so we didn't know what that was.
[00:49:02.280]So you just agree.
[00:49:03.113]I go, oh, yeah, sure. Oh, great, it's a C.
[00:49:04.675]Awesome, all right. Nice work, love you, too.
[00:49:10.080]The next song came on and he goes, "That song a G."
[00:49:12.870]And we go oh?
[00:49:14.190]What's he talking about?
[00:49:15.090]Next song came on and he put a letter to it
[00:49:17.460]and so we go is he talking about the notes
[00:49:19.290]in that song and so we got home
[00:49:20.277]and we took out the keyboard
[00:49:21.930]and we starting playing notes and guess what?
[00:49:24.000]He knew every single note that was played.
[00:49:26.100]He had perfect pitch.
[00:49:28.320]Not only that, but we started to play two notes at once,
[00:49:30.660]which he also knew three notes at once,
[00:49:32.610]four notes at once, and he knew every single note.
[00:49:34.620]And then he began to tell us
[00:49:36.030]that the phone rings at Grandma and Grandpa McNiff's house
[00:49:39.750]in Cook and he named the two notes that did that,
[00:49:42.720]which are different than Grandma and Grandpa Jensen's house
[00:49:45.150]in Lincoln, which he could tell those two notes.
[00:49:47.100]And he could also tell us the two notes
[00:49:48.780]of the phone when it rang at his daycare providers
[00:49:52.620]that he went to when he was three years old
[00:49:55.120]and then he also told us what the telephone,
[00:49:57.744]what the doorbell ring is at her house
[00:50:01.922]and then we got rolling, okay.
[00:50:03.995]So, we had this all over the place.
[00:50:06.690]Ben has perfect pitch.
[00:50:07.890]What we eventually found out is that those songs,
[00:50:09.755]when he said that that song was a C,
[00:50:12.230]he was going by the chord- The key.
[00:50:13.763]The key of, what the key of the song was.
[00:50:18.060]And so any song that we hear, he knows the key
[00:50:20.955]of that song.
[00:50:23.730]And so there are certain songs that he likes better.
[00:50:25.590]Not only that, but we figured out
[00:50:28.144]and he told us that every note has a color to it,
[00:50:32.280]so he associates it with a color,
[00:50:33.810]which absolutely makes sense why when we are at a place
[00:50:36.795]where everything is so loud,
[00:50:38.285]it is not just the sensory thing here,
[00:50:40.524]but it's also a sensory thing with his eyes
[00:50:43.131]and it's a sensory thing with his skin
[00:50:45.243]and so everything gets overloaded.
[00:50:47.504]It's not just his hearing that is a struggle for him
[00:50:51.003]because he sees the note C in red
[00:50:53.880]and he sees the note D in periwinkle
[00:50:56.080]and, yeah, legit, like colors, right.
[00:51:00.420]Vermilion.
[00:51:01.253]Vermilion, we got a vermilion on one of them.
[00:51:03.360]Yeah. Okay.
[00:51:05.177]And so, what do we do with information like that?
[00:51:08.550]Well, you know, it's playing to their strengths.
[00:51:10.980]Okay, obviously there's a strength here in music.
[00:51:13.800]Somehow we didn't know what we could do with this,
[00:51:16.860]but we did know we needed to get him into piano lessons
[00:51:20.760]and that's what we did and so this is Erin,
[00:51:23.280]his piano teacher.
[00:51:24.420]She's been his piano teacher for the past five years or so,
[00:51:28.678]but, yeah, we just knew.
[00:51:30.960]There's something here.
[00:51:32.496]I don't know what we're gonna do with it,
[00:51:35.940]but he really enjoys piano lessons.
[00:51:37.920]So we went to the band teacher
[00:51:39.150]and he goes, "I got the perfect instrument for Ben,"
[00:51:41.370]and he has the bells.
[00:51:42.420]And so Ben will play the bells in concert band
[00:51:45.480]and he doesn't look at the music.
[00:51:47.340]He looks at it once, takes a snapshot
[00:51:49.620]and he plays the song.
[00:51:51.206]It is so beautiful to be able to hear.
[00:51:53.640]And he loves pep band because he's able
[00:51:55.530]to be able to get in with all of the rest
[00:51:57.990]of his peers in pep band and so he loves that
[00:52:00.167]and so he gets a keyboard.
[00:52:02.010]And so this is a picture taken by Classic Photography
[00:52:06.780]and can you tell who he is?
[00:52:10.790]And so he loves the opportunity to play that
[00:52:13.617]and this was at the state tournament.
[00:52:15.150]Now, Ben still struggles with social cues, okay,
[00:52:18.896]because I wanna show you another picture
[00:52:20.475]that we had at the state tournament.
[00:52:22.380]This is a picture where everybody turned their back
[00:52:24.912]when they introduced the opposed team's name.
[00:52:29.730]Well, except for Ben.
[00:52:31.595]He's just happy to be there with everybody else.
[00:52:35.430]He doesn't know why they're turned around, but there we go.
[00:52:37.766]Ben shows us through his eyes oftentimes
[00:52:41.990]what he sees and it amazes us.
[00:52:44.250]A few years ago, Ben grabbed the phone
[00:52:46.534]from his mom and went outside
[00:52:48.048]to take some pictures and so this was very important for him
[00:52:51.667]and so he took these pictures,
[00:52:53.760]he took them home, he took them inside,
[00:52:56.130]he was insistent that we print these out
[00:52:58.530]and that he cut those out
[00:52:59.700]and that he pasted it in this format
[00:53:01.254]on this paper and then we got a frame.
[00:53:04.590]So, anybody, I'm gonna give you guys
[00:53:07.140]to discuss, 30 seconds, not discuss, just look at it,
[00:53:10.256]see if you can figure it out.
[00:53:16.710]And so this is what it was.
[00:53:18.900]So it's F, A, M, I, L, Y.
[00:53:28.980]It was important for Ben to be able to do this
[00:53:31.200]and it changed the way that looked at Ben all over again
[00:53:34.107]because Ben sees the world through a different lens
[00:53:37.920]and when Ben shows us this,
[00:53:39.014]then what do we do with that information.
[00:53:42.270]Can we incorporate that in our lessons?
[00:53:44.368]Can we change the social nature of things
[00:53:49.440]by taking this?
[00:53:50.850]Ben created his own intervention for himself.
[00:53:55.003]He did.
[00:53:56.700]So, you know, as we all do as educators,
[00:54:01.260]you have interventions that you do in the classroom
[00:54:04.140]and Ben obviously is a very visual person
[00:54:07.050]and so it was probably a year ago or so.
[00:54:09.936]We noticed that on his phone,
[00:54:14.130]he categorizes, he's created folders
[00:54:17.894]and categorizes photos.
[00:54:21.037]So, the first one is, what is that?
[00:54:25.410]Letters. Symbols.
[00:54:27.000]Yeah, letters, shapes and symbols
[00:54:30.210]and so he has full alphabets
[00:54:32.432]and those kind of things on here.
[00:54:34.566]Here's things, but if you look
[00:54:37.310]at all of the pictures that are on Ben's phone,
[00:54:40.410]it isn't, there's no pictures of people on there.
[00:54:44.336]It's all these symbols and Google images
[00:54:47.190]that he's saved over the years.
[00:54:51.078]And Ben, the way that Ben finds out new words,
[00:54:55.664]when he hears a new word that he doesn't understand,
[00:54:58.672]the very first thing that he does is he goes
[00:55:01.080]to a Google image search and he puts it in there
[00:55:04.260]and that's how he sees it.
[00:55:05.790]About a month ago, we were driving home.
[00:55:08.220]He had a cold and he goes, nose is abysmal.
[00:55:13.179]And we go what?
[00:55:14.499]Abysmal.
[00:55:16.528]What?
[00:55:17.702]Spell it.
[00:55:18.930]A-B-Y-S and we go abysmal?
[00:55:22.920]Yes.
[00:55:23.867]Nose is, his nose was abysmal.
[00:55:27.600]And so we looked it up,
[00:55:29.940]we looked it up and it's all of these dark images
[00:55:33.367]and these skull and cross bones
[00:55:35.340]and this pain and all- It's horrible.
[00:55:37.146]This kind of stuff, it's horrible.
[00:55:39.621]So, he showed us this.
[00:55:42.181]Why are we not doing vocab with kids with autism.
[00:55:44.997]If we know that it's all about pictures
[00:55:47.770]for kids with autism, why are we having them write
[00:55:51.034]it all out when that's not gonna be
[00:55:53.910]the thing that they understand in the third grade?
[00:55:55.770]Why don't we have them print out
[00:55:57.797]or isolate 16 pictures of what a certain word is.
[00:56:04.197]We can certainly build those things
[00:56:06.074]and Ben showed to us.
[00:56:08.280]And sometimes, so, he surprises us all the time
[00:56:13.647]and so you go ahead with the-
[00:56:15.844]Oh, yeah, he really does.
[00:56:17.338]Even last Sunday.
[00:56:19.080]Yeah, you know, so they've been,
[00:56:22.710]he's been talking to me about, you know,
[00:56:25.740]he loves letters, numbers and he's been talking
[00:56:28.080]to me about the Greek alphabet
[00:56:31.290]and then the English alphabet
[00:56:32.640]and he's been talking about what letters are similar
[00:56:35.141]and what are different and, you know, okay, great.
[00:56:38.250]And, you know, as parents do, you get busy
[00:56:40.922]and your child's kind of talking and there you go
[00:56:43.418]and okay and I'm listening and I'm like,
[00:56:45.466]you know what, Ben?
[00:56:46.490]Can you write down the Russian alphabet for me?
[00:56:49.110]Just, you know, really, can you, yeah, can you do that.
[00:56:52.976]And so he grabbed a phone book.
[00:56:54.917]Not a phone book. A phone book.
[00:56:56.240]Do we even have phone books anymore?
[00:56:57.904]So he grabbed a notebook.
[00:57:00.240]He didn't grab his phone that was left on the counter,
[00:57:04.680]but he grabbed a notebook and he started writing
[00:57:06.420]and 20 minutes later he came back to us
[00:57:07.907]and so we got the Russian alphabet.
[00:57:10.590]But here's the thing, we didn't just get
[00:57:12.630]the Russian alphabet,
[00:57:13.980]we also got Azerbaijan Cyrillic
[00:57:16.526]and Azerbaijan Latin and we also got Danish
[00:57:20.820]and we also got German and Hebrew
[00:57:22.672]and Kazakh and Serbian and Spanish
[00:57:25.381]and Swedish and Turkish and Ukrainian
[00:57:28.133]and all of those are just out of his brain
[00:57:32.400]because that is what he hyperfocuses on, so, yeah.
[00:57:35.408]And who knew, who knew.
[00:57:37.500]You know, so if any transition specialists out there?
[00:57:40.600]Yeah, transition specialists out there.
[00:57:42.360]So, I have a child with perfect pitch
[00:57:44.688]that knows apparently every alphabet in the world,
[00:57:47.730]so if there's a job, job for him that you know of,
[00:57:51.322]come find me.
[00:57:52.325]Figure that out.
[00:57:53.158]Come up to us afterwards.
[00:57:54.690]Tell us what that is.
[00:57:57.187]You know, and so really,
[00:57:59.100]what's the future of our team look like?
[00:58:01.306]We don't know and that's okay.
[00:58:05.490]We know that we need to focus on his strengths
[00:58:10.170]and we need to keep building on those strengths
[00:58:13.710]and I'm sure he's gonna show us more
[00:58:15.339]and more and more as he gets older
[00:58:17.776]and he decides to tell us what they are.
[00:58:22.170]You know, we need to look at improving,
[00:58:24.690]improving and building. Right.
[00:58:26.910]We need to keep having high expectations
[00:58:28.980]and we need to presume competency.
[00:58:30.870]Okay, we need to keep on taking what he shows us
[00:58:34.920]and giving us to be able to do that
[00:58:36.567]and we have a transition coming up.
[00:58:38.565]He's 15 years old and in six years he's gonna be 21
[00:58:41.850]and we don't know anything about that world yet
[00:58:44.165]and we're gonna find that out.
[00:58:47.130]But we know that it's gonna be okay
[00:58:50.564]and that's the thing that we've gotten to now
[00:58:52.161]that he's 15 years old.
[00:58:53.889]We know it's gonna be okay
[00:58:55.860]and that was not something that were were certain about
[00:58:58.680]when he was one or two.
[00:59:00.144]And so for the new parents who are here
[00:59:01.890]for the first time,
[00:59:03.120]I wanna say thank you so much
[00:59:04.380]for coming to the conference
[00:59:06.000]because this is where we started to learn
[00:59:09.498]and we met new parents that have been here
[00:59:13.290]and had those same conversations
[00:59:15.540]and there are parents around
[00:59:16.890]and it means the world.
[00:59:20.550]I have just a couple more stories
[00:59:22.020]to kind of finish it off.
[00:59:23.237]We told you that Ben loved football.
[00:59:25.530]This is Ben when he was in the fourth grade,
[00:59:28.227]third grade with my beautiful wife.
[00:59:31.749]And his quote friends, those three boys
[00:59:36.272]that I had circled earlier,
[00:59:38.130]I'm gonna use big old quotes on this,
[00:59:40.260]they came up to Ben in the third grade.
[00:59:42.090]They play full pad football at Tri-County
[00:59:44.954]in the third grade and they went up
[00:59:47.664]to my son and said,
[00:59:48.847]"Hey, Ben, you gonna come play football?"
[00:59:52.470]And I looked down at them
[00:59:53.460]and I went, "No."
[00:59:55.797]And they looked at me like we're not talking to you.
[00:59:58.380]Okay, and I'm like "No, I don't think so, guys.
[01:00:02.659]I don't think that he can do that."
[01:00:04.280]And they're like, "Ben, come play football with us,
[01:00:08.888]it'll be fun," so they stayed on him with it
[01:00:10.339]and so Ben came home,
[01:00:12.937]"Ben play football in fourth grade,
[01:00:14.610]Ben play football in fourth grade,
[01:00:15.901]Ben play football in fourth grade."
[01:00:18.330]So, guess what?
[01:00:19.860]Ben played football in the fourth grade.
[01:00:22.170]So I got to help coach,
[01:00:23.490]but if you look at this lineup of kids,
[01:00:26.010]you can't tell Ben from anybody else
[01:00:29.610]and that's the thing.
[01:00:30.443]Ben's out there with his friends
[01:00:31.645]and I will tell you that I don't,
[01:00:35.790]I don't care if he learns another math problem
[01:00:38.365]or he reads another word.
[01:00:40.950]To me, Ben has friends.
[01:00:45.090]The rest of the stuff for me is gravy.
[01:00:47.070]We didn't know whether he was gonna talk.
[01:00:49.140]We didn't know what the future, my son has friends.
[01:00:52.350]And so I'm internally grateful for that
[01:00:56.370]and you know what we learned about presumed competence.
[01:00:59.010]Okay, you know what we learned about football for Ben
[01:01:02.984]is he is so awful at football.
[01:01:06.360]Oh, my God, I can't even tell you.
[01:01:08.820]He is so bad at the sport.
[01:01:12.840]They put him on the line and he's a big kid
[01:01:15.464]and they hiked the ball and he runs the other way.
[01:01:18.150]We lost like four fifth graders during his time
[01:01:21.181]on the team, it was awful.
[01:01:25.981]He was not good.
[01:01:30.120]That's okay.
[01:01:31.980]And that's okay, that's okay.
[01:01:35.580]In the sixth grade, Zack went to his mom
[01:01:38.264]and he said, "Mom, the rest of the team wants Ben
[01:01:41.491]to score a touchdown."
[01:01:44.790]And so, Zack's mom went to the coach, Brad,
[01:01:47.709]the guy in the sharp suit and said, "Brad,"
[01:01:51.720]he was the coach, "The team wants Ben
[01:01:54.690]to score a touchdown."
[01:01:57.180]He goes, "Okay, we're gonna do that,"
[01:01:58.260]and so the week before, he came to me and said,
[01:02:00.877]"Guess what, Ben's gonna score a touchdown
[01:02:02.205]in this next game."
[01:02:03.038]And I go, "Uh, have you seen him play?"
[01:02:06.101]I don't know how you're gonna do that.
[01:02:07.105]I don't think that's gonna happen.
[01:02:10.730]And he said, "No, it's gonna be great,
[01:02:11.700]it's gonna be okay."
[01:02:14.220]And so that's when this happened.
[01:02:22.520]Let's go man.
[01:02:25.696]♪ Whatever it takes ♪
[01:02:28.632]♪ 'Cause I love the adrenaline in my veins ♪
[01:02:32.769]♪ Whatever it takes ♪
[01:02:35.774]Ben, this way.
[01:02:36.765]♪ 'Cause I love how it feels when I break the chains. ♪
[01:02:39.676]Come on Benny, come on Benny.
[01:02:44.348]♪ Take me to the top, I'm ready for whatever it takes ♪
[01:02:50.332]♪ 'Cause I love the adrenaline in my veins ♪
[01:03:08.850]♪ Whatever it takes ♪
[01:03:11.890]♪ 'Cause I love the adrenaline in my veins ♪
[01:03:15.279]Good job.
[01:03:16.112]You scored a touchdown, man, yeah.
[01:03:19.495]♪ 'Cause I love how it feels when I break the chains ♪
[01:03:23.036]♪ Whatever it takes ♪
[01:03:27.708]♪ Take me to the top ♪
[01:03:29.114]♪ I'm ready for whatever it takes ♪
[01:03:35.794]We were so grateful to both teams
[01:03:38.226]and I looked up after I was recording that
[01:03:42.540]and there were people standing
[01:03:44.070]in the stands clapping and there were people
[01:03:46.500]that were crying because the kids
[01:03:48.562]that were on Ben's team had been,
[01:03:50.268]they're his classmates and so they go home every day
[01:03:56.160]and they say, "Guess what Ben did, guess what Ben did?"
[01:03:58.350]And so all of these parents
[01:03:59.610]and all of these people in the community had ownership
[01:04:02.542]in Ben, too, and so it meant the world
[01:04:05.744]to them to see Ben be able to do that.
[01:04:09.266]Ben went out for football in junior high, as well.
[01:04:12.316]He didn't go out in high school
[01:04:14.535]because that's where brother went
[01:04:16.519]and he did not want to be on the same team with brother.
[01:04:22.322]His brother's a little bigger.
[01:04:23.986]Which is okay, which I okay.
[01:04:26.040]Guys were a little bit bigger at that point.
[01:04:29.940]But here's what I'll tell you.
[01:04:33.480]Never give up.
[01:04:34.380]There is no end to the season when it comes to playoffs.
[01:04:37.669]There are no playoffs.
[01:04:41.280]There are only wins and losses
[01:04:42.701]and so we celebrate the wins
[01:04:44.178]because there is a lot of them.
[01:04:47.010]We learn the lessons from the losses
[01:04:48.840]because there's some of them, too,
[01:04:49.999]but we don't let them bring us down.
[01:04:53.940]Every play isn't gonna produce that touchdown.
[01:04:56.520]And so over our career,
[01:05:00.780]we have been privy to the, as teachers,
[01:05:03.300]I wanna speak to you just for a moment.
[01:05:04.602]We are privy to the education and the lives
[01:05:07.631]of thousands of people.
[01:05:11.430]We can make a huge impact in the work that we do.
[01:05:18.120]It could just be one great comment
[01:05:19.703]that is something like there is nothing wrong
[01:05:22.437]with that kid.
[01:05:25.350]It could be something that you say
[01:05:26.746]that changes the outlook for that kid
[01:05:29.490]for the rest of his life.
[01:05:31.950]At the end of the day, can we lay our head down
[01:05:33.487]on our pillow and say that we did whatever it took
[01:05:36.330]to be able to help that kid
[01:05:37.590]because that's what truly makes a good educator.
[01:05:41.190]It isn't the teacher, it isn't the educator
[01:05:43.740]that can teach every single,
[01:05:45.536]all of the kids that are scoring 32s on their ACT,
[01:05:48.250]their very, very best teachers are the ones
[01:05:52.020]who can teach the ones who are the hardest to teach
[01:05:54.960]and my kid's one of those.
[01:05:57.180]Again, I wanna say thank you for the work
[01:05:58.920]that you do and I'm gonna leave you with
[01:06:00.330]this one last story.
[01:06:02.460]When Ben was in the second grade,
[01:06:05.280]they had an assignment.
[01:06:07.380]Just like most second graders,
[01:06:08.970]it was what do you wanna be when you grow up?
[01:06:11.310]And so his para educator sat down next to him,
[01:06:13.380]Annette sat down next to him
[01:06:16.380]and the reason why your work is
[01:06:17.340]so important is because of this.
[01:06:18.645]When she sat down next Ben
[01:06:21.180]and she said, "Ben, what do you wanna be when you grow up?"
[01:06:24.390]He thought about it for a minute, looked up
[01:06:28.080]and then he wrote this.
[01:06:29.887]"When I grow up, I want to be loved.
[01:06:33.690]When I grow up, I want to be loved."
[01:06:37.020]If you can end your career knowing
[01:06:40.680]that the kids that you worked with were loved
[01:06:42.930]and as parents, if you know that when your kid comes home
[01:06:48.750]that they're gonna be loved, everything's gonna be okay.
[01:06:52.410]All the rest is gravy.
[01:06:53.970]We wanna thank you so very much
[01:06:55.710]for all of the work you do.
[01:06:56.687]Thank you so much for inviting us to speak
[01:06:58.863]and we'll let you guys go.
[01:07:00.269]Thank you so much everybody.
[01:07:02.426](audience applauding)

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Keynote: The Problem isn't the Player, it's the Playbook: How Having a Child with Autism Changed our Lives - Drs. Matt and Brenda McNiff

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