Juwayne Brooks and Tish Leon
DescriptionFriends Juwayne Brooks (61) and Tish Leon (32) talk about their shared experience of being mothers to sons with autism and generate ideas for change within schools and society for people on the spectrum.
Subject Log / Time Code
- Juwayne Brooks
- Tish Leon
Recording LocationVirtual Recording
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00:03 All right, you're good to go.
00:05 Hi, my name is juwayne Brooks and I am old I'm 61. Today is Sunday September 6th 2020. I'm here in Oakland, California and I'm here with Mia my conversation partner. And so yeah, that's what you're you're here with wish.
00:34 I mean, I'm sorry. I'm here with Tish my conversation partner.
00:43 Okay, I'm Tish and my last name is Leon and I am 32 years old. And today is Sunday, September 6th, 2020 and I am out here in Hayward California. And the name of my conversation partner is Dwayne and our relationship with her is just a friends.
01:12 And we just actually met so it's like we don't really have that much of a connection but because of autism that's kind of how we have our connection autism is our connection route and you know just being able to know that it's it's not just a small community that I've learned that it's very broad very vast cuz one in the beginning like when I wanted to know autism people kept on saying what's a broad-spectrum and I was like, okay. Meaning. I've had to learn I mean, I don't know if that's the same with you join like this that and how you first heard of it. Like is that the you know, you just weren't sure.
01:58 Well, you know, I first heard of autism when I was like in my late teens maybe and the people who are saw with autism people who do all males and they were institutionalized. I would see them in pictures and they didn't communicate, you know with anyone and so years later fast forward to when my son is diagnosed. I might well
02:27 What is our future you know, he's not exactly like those people. I saw you even though he wasn't talking at that point, but you know how it's going to be for us and
02:40 You know, it's crazy because you know, it is a spectrum. You know, what is now they call it ASD, you know, everything has has initials now and
02:56 Is there a lot of lot of kids that are you do being diagnosed? I know when 20 in 2000 when my son was about for the statistics for one in every 150 children. I believe it was one and every 90 boys were being diagnosed at that time. Will the latest statistics for 20/20 or say everyone in 54 children are being diagnosed. So, you know, I find my Peak myself telling people that look, you know, the numbers are getting larger and you know, we're not prepared as a as a society.
03:36 For you know, our our our our citizens who are on the Spectrum, so that's you know, not to wear.
03:46 How I look at things, you know just in general.
03:50 Yeah, I noticed and more times when we go out in public like more people don't even notice is autistic and earned has this part of his his visual thing that you can notice is that he has a humming stem and he hums and happiness excitement when he's happy use the flat his hands when he was younger, then he grew into humming and people stare at that little kids mock him or not. But mostly mimic and they don't know why they're managing different sounds that they're not used to notice me and it's new to them. And so they're like all that could tell me and then I'll hear them in the next aisle and they're humming to and they coming and I'm like, huh and like I don't get offended by that but it's more as that child that doesn't know there for the parent has not changed and it
04:50 Consumptive idea is not shared as well. Then, you know if there's more people in the store that don't know about it then do then we're kind of out and just the simple thing is stopping and getting stairs or when we like friends cuz we went to a little fun place that kids like to go to and you didn't leave and have the tools of knowing how to take him away from a fun activity to a not fun activity and I had to literally carry have a certain way to drag him out of there and all people were doing is like somewhere staring but somewhere just laid all that kid is tired, but didn't know why Framing and it wasn't cuz he was tired as because he did not want to go and I had to Caroline looks in the parking lot.
05:53 It's like that. Yeah. Well when Alex was younger he he did the hand flapping and he the humming he still has some stimming activities.
06:11 He will harm especially he has the sensory processing disorder. So when their noises that he cannot handle he will he will harm as well as put his hands over his ears, but also
06:28 He you know.
06:32 He has been known to take off running when something is you know that he doesn't want to do or when he's you know, that's really on the beginning of a meltdown and
06:46 You know, he's a really big guy. He's over 6 feet. And so that's you know proof. We have to really find ways to try to keep that from happening because you know, somebody see him running down the street and crying or whatever and it can you know, what you end up being a really bad situation, right? So
07:11 YouTube about that, you know when he was little it was much easier to control to deal with and
07:20 He has he's not like he was when he was younger, you know, but you do on any given day. It's things happen. You know that there could be a problem and Society doesn't understand that. We don't we have not educated Society enough about autism and that's something that really needs to happen because you know, I see people sometimes having
07:51 Shoes, you know that are perceived as negative issues.
07:57 By the community, but that person is just dealing as in the best way. They can in a lot of times they are people on the autism spectrum.
08:08 And you know, we need to start. I mean from our Police Department's on down they have to understand. You know, I know of a situation where a mother
08:22 Had to call the police because her son was out of control. Will the first thing she did when she called 911 was tell them. So what ended up happening is they brought it took him a little while longer to get there, but they brought a specialist who could deal with him. You know, who was who who who knew how to deal with so it didn't turn out to be a bad situation but not all police departments have that, you know, so concerns just being a mom here. They don't they are ya if there's so many things it's just, you know, we have the normal things or the typical things. I should say did people have to deal with in raising children, but then there's a whole nother.
09:13 Long list of things that we have to deal with, you know, I'm from the social issues food and shoes I mean where you going to take them to church, you know programs all of that is so many things in
09:32 You know, I'm really hoping and entrusting that.
09:37 You know we can get on top of this as a society that we can get on top of that. She now.
09:46 In part of those socials is partly with schools and you know, they're they're put into a different part of an educational classroom and children and they're separated and they don't know how they're learning when I was going in elementary school. I didn't see these these type of interactions. Like I knew we will go to the assembly and I wouldn't see any special needs and I never noticed it. I didn't really talk to me until I'm having a special needs child and I'm like, they can't go to assembly can't really eat lunch in the cafeteria like regular, you know, like what will you do and they is different that could they have to go to the playground a different way and it's just how they are viewed amongst other.
10:46 It's not that they're not smart enough just us. But the way they are perceived as different in there for the children. Don't see that and when they grow up not seeing it. That's just happens and they evolve into that instead of bringing it more into into their environment world and my son. He said they want to implement and seeing into the special day class and putting more into regular day class and have it be more of like
11:31 And that way he can stay normal classes compare their special day classes and see how they that goes. But you know, I'm over here like so scared of that cuz you get some of the kids who will not be okay with that and start eating as first grader.
11:59 Okay, you know he he knows how to do first grade stuff you different.
12:11 Well, you know we were very fortunate because that Alex had
12:18 You know, I actually put him in Early Head Start when he was too and you know that through that program we discovered that there was something going on with him and it was originally thought that it was a language delay because or speech and language. He did have receptive language. But you know, he didn't Express Yourself verbally you do very well and so he didn't really start talking where we could understand it until he was too I mean, I'm sorry until he was 4 by then. He had gone into the the public school system. They have program beginning at 3. She gone to the language delay. Eventually they you know by 4. They put them in an Autism program and
13:09 Was reading the teacher. I remember one day the teacher came to me and said I think he's reading but she didn't know for sure because of you know, he didn't speak well and about two weeks later. She came back and said I know he's reading and then you know, if a guy is he got into maybe I don't know second third grade third grade maybe his teacher was pulled from the system to I mean from the from that school to do an inclusion program. So he asked me if he could take Alex with him and you know, of course I let him go and it ended up being good for him. Yes, everybody every kid doesn't understand but for the most part the kids were really nice and buy Heist. I remember
13:59 List of particular student a female student came to me and she was really she was actually sad. She's told me I really like Alex and he's so mean to me. I don't understand that and it wasn't that he was just mean it was just the way he communicated. He's really to the point and she didn't understand that but you know the kids for the most part were wear nice that they were being, you know, preparing them to be able to embrace, you know, people who are different and you know course we have, you know, occasional situation where somebody with tease them or something, but for the most part it was a good experience, you know going through the inclusion program.
14:45 And I think it's good for both sides for both the typical functioning students as well as the special needs students and it gets them out of the special day class is all day. I think by the time he finish school. I think he was like
15:03 30% special day
15:06 R32 40% special day and the rest was you know in inclusion.
15:12 So yeah.
15:18 I'm glad he was able to start reading and in doing that cuz I fear that for my own kid like he is very capable. We watch certain type of videos. I have magnetic letters. We print out worksheets and he's right now just fighting it, but we know he's smart enough to cuz he's like, okay. I already know how to do that. Why are you asking me again? And we try to play with him and be like, okay 2 plus 2 is 100 and he's looking at me like I know you know better and he's you know, he just doesn't want to say it because he knows he's tired of being a store shown every time or you know, he does it once and then he thinks he knows that he doesn't have to do it again. And that's one of the things that we have to like kind of make fun is okay. Look, you know what I have two apples and two oranges. Are these the same know how many are there of them?
16:18 There's two of these two plus two no matter how you spin it.
16:26 Engagement more fun just where they
16:36 You get old do well, they really I mean from my experience from what I've seen observing not only my own child, but other people on the Spectrum the areas where they do. Well, they really do. Well, you know, they're motivated Alex loves Electra. I mean he can't
16:56 He carries a at one point. He had a Chromebook a tablet and a phone he would carry all three of those everywhere now. It's just the tablet and the phone and when we drive to every time I promise you this every time we drive down the street, he takes pictures of the traffic signals.
17:22 We tried it on the Same by 310 times a day. He will take the same pictures over and over again, and he just loves that he loves he used to draw.
17:36 I don't know they were for lack of better terms. I guess the freeway grids, you know, cuz he's really interesting. But Caltrans. Does you know that area in Hayward where they they did the one way around. What is that mission and all that area? I mean he hates that but you know and and those kinds of things everything pertaining to that kind of stuff same thing with railroad railroad crossings. He always takes pictures and I can hear him just playing, you know on YouTube playing railroads that trains as they go by and is their horn goes off so,
18:21 They really he really focuses on those areas that he's interested in and I'm trying to find a way to help him.
18:31 Turn some of that around 2 to help him be productive in society. But motivation can be an issue. So, you know, we have to build that his confidence because you know, the skills are there and he either but he's going to always need somebody to help him help push him or they help him.
18:54 Develop for the help him, you know just to 22 you don't keep moving forward.
19:04 And that's so one of the concerns I have or just
19:10 You know what it for him. He's aged out of so much. He's 23 and 22, uh out of the school system, you know and everything changes. I mean while we're in the pandemic now, but before you know Regional Center told me I had to call but they don't set up, you know programs for you. I have to do the calling and I called programs note sometimes no one would answer.
19:41 When we did find a program they weren't the consumers there weren't compatible with him.
19:50 And if I would we do there? No almost no programs, you know housing is another issue.
19:59 You know what would happens because the group home model, I think you know through this pandemic. We've kind of found out that that's not the healthiest place for our loved ones to be
20:13 And you know, my dream is to help develop for autism Community where there's housing you can have a roommate, but you have the supports.
20:28 That you need to function, you know, you can go to work but maybe some people may have issues. They're not able for instance my son loves computers, but he doesn't know how to tie your shoes. Well, we've not at one point that was really important at this point is not important. We just buy shoes. You don't have to die and you have to kind of choose your battles in this in this and so that
21:00 And I'm not here anymore. That's a whole nother Thief who will say he has a job. He makes when he's going to help his old people don't steal this money, you know, all of that stuff the worries there a lot of worries.
21:28 Definitely a lot of words is that
21:35 Yeah, he's trying to get out of bed.
21:40 Sorry, not sorry.
21:49 Trying to find a quieter say Alex is probably going to show his face.
21:57 Okay move.
22:05 The ice I worry about that to you love and you know when I'm gone, who's who's going to make sure he's okay, you know or is there going to be a help to you know, I know he needs and you know as we grow in get older, you know, I you know, it's not like I'm looking for somebody to do that. But I'm helping him learn from a ways pricing himself and let him know you know, what are your what do you like to do or how do you how can somebody help you do? What you want to do is I see his his upbringing being better at heart.
22:59 Finger over 200k
23:11 Do their mommy's friends?
23:19 Yeah, he loves cars. I can see him, you know doing some mechanic work when you get older.
23:27 Cuz I feel like you know, the mechanic world is so Broad and he could do simple stuff that isn't reliable. Right and he was fixation on cars and sell 3300 Hot Wheels in heel of sports cars, so
24:03 I tried again.
24:15 You know, there's so many positive, you know with this journey. I mean it's a unique journey is unique for each family, you know each person but I've learned how to be creative was always one of these those people that you know, when I got up in the morning, I knew what my day was going to be, you know on this journey you often find that okay, you plan something, but you got to be quick to to visit here and I can be funny sometimes life is actually a comedy of errors and sometimes I just have to sit down and laugh because things didn't turn out or things just got crazy, but I do appreciate that way and you know, like I said a guy being able to adapt is really important, especially when you're working with someone.
25:15 Doesn't find it easy to adapt, you know, I tried to teach Alex you have to adapt in life.
25:22 He can do it as much as he can but it can it can cost you know him to who in to become agitated because you know a swift changes is not you know, that's something that in this particular situation that is is easy to deal with.
25:43 So I always try to push it back to the positives, you know, things don't have to always be bad.
25:58 You have a handsome young man there.
26:07 Now it's it. What how do you eat? You know the church issues that's another issue because every church is not on proven friendly.
26:19 And yeah, I wasn't sure you know, we were at a particular Church where?
26:24 The music was really loud and so he would have to leave that part of the service and then come back in for the quieter songs and the sermon and then he has problems with voice overs, you know, and so when they would do the video announcements, he couldn't handle that and it was just an issue for him going in and out. And so we had to find some place that was a little more autism-friendly also the auditory it for him with the auditory issues.
27:01 Voice overs, like I said or are not good for him.
27:07 So when we're driving down the street or we're watching you don't watch much television, but when we're driving down the street, he was here when the commercials come Fiesta turn the radio down or I have to turn it down because he just can't handle the commercials but the music is fine the regular music playing so, you know, we haven't live in a world of not showering too many commercials, you know, but that's okay and you know, you know, you have to know how to adjust.
27:48 5 more minutes, okay.
28:01 You can go get your car's ready want to get your car's ready for the part, you know, the repetitive things that happen every night X playing right right. Now, he's playing the movie Wall-E from Pixar every of me and he plays it at the same time. He'll play it like two or three times and it stops at the end and ends at the exact same time every night.
28:45 And if it's not while he's wearing toy stories.
28:50 Or cars or whatever. But yeah, he's been with Wally for at least two months now every night every night.
29:03 I think we've
29:08 Rico Miss kind of pulled her away for a minute
29:12 Sounds like it so cute. He is a cutie.
29:20 I must say my son is handsome in self. He just sees camera shy.
29:26 You know, what's funny in front of 400 people or 200? However many it is.
29:32 You know, he's fine. He doesn't performance with the other is other special needs hip hop partners.
29:43 You know in person he will either really like you and talk to you or he clams up and says nothing. There's no real in between.
30:03 Yeah, he is trying to leave and yeah, he doesn't know the difference between 10 minutes and 30 minutes, right? He just knows I told him I have to work first and then we're going to go to the park. So
30:18 He's like, okay work now. He's ready to go to the park. Yeah.
30:26 What bus go before it gets too hot because we're just going to have a picnic at the park and and Bri and that's one of the things is, you know, we can't be cooped up in the house all day. He has so much energy, right, you know, we got to be able to let that out somehow and they don't know especially me go like he doesn't understand what coronavirus he doesn't understand that we have to stay home and be safe at all times. The best I've gotten is him being able to wear masks and that's the best we've gotten out of this and he knows to wear stores and you know to be careful we wash our hands and this time if we go to the park, this is the first time we're going to go to the park so he's like really excited and I've been keeping him home a lot and he goes to daycare for social interaction. But other than that, he doesn't get out much. We try to stay home as much as possible and we don't get out to the public to
31:26 Different world out there right now and we're just trying to be careful and you know the less, you know the better because the last amount down to the park. He just doesn't he wants it now and it's not right now. I'm going to get it we get impatient and that's just how is Brendan working? Like I want to go right now, you know, we all get him just get frustrated at times. It's all the same. It's just there's a different.
32:11 And sweet and we learn to address with it.
32:19 Haha, yeah, again adjustments pivoting adaption. All of that is that's that's huge in this area. Now. What foods do you find?
32:35 That he he only like certain foods. Like I have this thing I can call it. And I know this is nothing official. This is just my own opinion. I call it the autism diet because I see so many people on the Spectrum are so many young people on the spectrum that only eat some of these foods like pizza chicken tenders or chicken nuggets mac and cheese and French fries is my son can eat chicken tenders every day. He would if he can eat macaroni and cheese everyday he would and I know some of it is an aversion to certain foods the textures the text just maybe sometimes more than the taste.
33:19 You know.
33:22 So bring it he will eat things like salad and things like that. He won't eat to it. He really won't eat fruit and listen to peach cobbler or something, but in terms of you know, just eating fruit, so I don't even bother him as long as he he he likes vegetables. So as long as he's eating vegetables, I don't I don't trip off the fruit.
33:45 So do you find your son having you know aversions to certain foods or food?
33:56 Yeah, he has the the same thing as the he is like a the process to thing. He loves Enders the hamburgers, you know, those foods that are just kind of on the No-No list on the doctor's but what we do is he I let him eat what he wants but he also drink smoothies that I make organic smoothies and anything without he doesn't like the strawberries blueberries raspberries ripen cantaloupe pineapple those type of things where they don't have seeds in it. I make into a blender protein powder and a few spinach leaves and he drinks it and it's the same thing as if you eat all those things in a day and then if you were to just eat an apple
34:57 Like that would be enough. So he's all these things and he drinks about maybe.
35:03 Okay, he drinks about 64 oz of that fresh Blended fruits in a smoothie like in about an hour. I knew that and that's how he gets his nutrients and I don't feel as bad as when he when I'm making french fries or read it like today. We're going to go get a burger and I don't feel bad doing that when I get done because I know he's going to he has Healthy nutrition in his body and it's not in there.
35:39 Oh, yeah. Yeah, and that's your trying to have them have a well-rounded diet. I will say he will he will take a smoothie at you know, but only certain kinds you know, it has to be strawberry. No banana you no. No no melons, you know, I eat watermelon a lot. You know, when's a lot. He just he won't touch it on my Alex just tasted really good. He won't touch it and then, you know keeping him away from the candy and things like that. Yeah. Yeah because in in things like ABA therapy
36:21 They use candy when he was doing a VA back and it's for many years ago. They use things like candy and treats to help with that their email to give them an incentive to do what they needed to do as so
36:38 That cause problems because it's like, okay, I'll do what you want to do me to do but I I need to be rewarded with candy or or with with with cookies or something and you. Kind of wish that they had not started it that way if they could have found another way or like with goldfish. That was really a big one. No problems when it comes to special-needs kids, right? Right. Would you seen you seen success with his NBA therapy?
37:13 I have I done the best that I could think of even if all the research I had all day to look up. I don't think I could have done it by myself. Right? Right, right. Yeah, I was fortunate or he was fortunate because they in the program he was in they really push ABA because before he was talkin, I don't know how you feeling with Pat.
37:39 The Pick 3
37:42 Listen to white moth with pets.
37:46 I thought it was for the dogs. It's a picture Exchange program where they they have cards and the what they want. They told the card, you know what they want. And so we lose that he didn't really like it and then we went into a he went into a Time sign language you're frustrated with that he can do it, but he got frustrated. So then he started talking and there was no need for it for those two things anymore, but overall I mean
38:21 I'm honored that God chose me to be Alexander's mom. You know, I know that a lot of prayer.
38:31 But I just you know really focusing in.
38:38 On that part of my life is has helped me get through and has you know there many doors that have been open for us that I never thought would have been open and I just, you know, I wouldn't trade any of this for the world.
38:53 So, you know, I'm very blessed and my son is very blessed.
38:59 Yeah, I see that the cuz I'm like At first I was just like oh my gosh, and you know why and then you know through prayer and strength. I Was Made I was given a new vision about all this and I completely am grateful that I was blessed with his child as well. Yeah, except the pool again. I didn't number wasn't okay dealing with too many people, but now you know, who cares this is who we are and I love it. That was nice chatting and you know, it was great to get to express these concerns that we have for autism and it was great connect with you on here and I appreciate connecting with you and and me and thank you for having us here.
39:56 Thank you, Mia, and auntie yootish. I hope that we can you do build a relationship through this. I I would love to build a relationship with you with the right our children. And again, thank you so much. I this quite rewarding and yeah, you got to make my day today be so much stop a recording and talk about the other things. But thank you both so much for being here today. Thank you.