“Autism Everyday” Video transcript.
Video opens to soft music, and various children making a variety of noises of frustration and distress, from crying to babbling, to screaming.
Danson’s Mom: Hey, Danson, Danson!
Jackson’s Dad: If you eat that piece of chicken…
Christian’s Mom: No hair pulling.
Music changes to soft, somber music as the title flashes on screen, “Autism Every Day.”
Jackson’s Mom: You can’t really take a day off autism. Autism never took a day off on me.
Alison Singer: In a lot of ways, she’s like a baby. She’s just big and she needs constant attention.
Jodie: Are you crying?
Alison Singer: She can’t be left alone for a minute. She always has to have my attention, and it’s exhausting.
Jackson’s Mom: In one year, we had three kids that were diagnosed with spectrum disorders.
Alison Singer: He used to take his clothes off a lot, and we’re working on that.
Christian’s Mom: He doesn’t speak much at all. (Christian humming in the background) Hey, hi.
Jackson’s Mom: He has never spoken a single word.
Daniel’s Mom: Everything about Daniel’s life that seems normal for a typical kid, like going out to dinner, or going out to a park, all that, for us, is work.
Jackson’s Mom (while brushing Jackson’s teeth with electric toothbrush): Oh, good. A little bit more, I’m almost done. (Jackson screaming)
Alison Singer: It’s impossible for me to talk on the phone at home.
Daniel’s Mom: Take your plate and bring it to the kitchen.
Christian’s Mom: I so hope that I won’t be changing diapers when he’s six and a half.
Daniel’s Mom: I didn’t choose to do this, and I’m not a therapist. I was drafted; I have an autistic child.
Jackson’s Mom: Everything I do is about autism. (Jackson whimpering)
Do you wanna do the alphabet or the numbers?
Christian’s Mom: Do you wanna go up, up? Okay. I have to stay home with him because I have to facilitate the therapists, going here, going there, going there, the medication, the constant medical appointments.
Jackson’s Mom: I really had to give up my entire life as I knew it.
Daniel’s Mom: Well, I left the job that I never intended to leave.
Jackson’s Mom: And I did have to quit my job.
Alison Singer: Our entire social life revolves around autism, and all of our friends are parents of children with autism.
Daniel’s Mom: The parents of autistic children often stick together, and we have to.
Alison Singer: Because they understand, if your kid is having a meltdown, and there’s no judgment. It’s just, that is how it is.
Jackson’s Mom: You know, it’s very hard to maintain friendships with people that have no idea, like just how difficult, you know, life is on a day to day basis.
Christian’s Mom: They have no idea how easy it is compared to this. You know, your heart is breaking all day long. You know, you think about his future, and all the pain he’s in, and I don’t think they can understand that.
Jackson’s Mom: And the parents who are going out for bagels together and are like, “Oh, do you wanna come for a bagel?” and I think, yes, in another life, I’d love to come for a bagel, but right now, I have to write down what he’s doing, so we can go home and work on that. And then I have to take the other two to therapy, so no, I can’t go for a bagel.
Danson’s Mom: Danson ran out the door himself, which was absolutely terrifying. And it was freezing cold, no shirt on, and no shoes on.
Daniel’s Mom: Daniel had walked out the front door.
Christian’s Mom: He got away from me, and he was running down the middle of 1st Avenue.
Alison Singer: She took off once, and we had to call the police.
Danson’s Mom: I immediately called the police.
Christian’s Mom: I was just running, straight on into traffic.
Daniel’s Mom: Daniel wouldn’t look at traffic.
Danson’s Mom: Running, sprinting down to that traffic light.
Christian’s Mom: He’s gonna get hit by a car.
Danson’s Mom: I really was sure that he would be struck by a car.
Christian’s Mom: People were beeping.
Danson’s Mom: My heart was racing.
Christian’s Mom: And I felt my life going in slow motion.
Danson’s Mom: Anything could’ve happened.
Christian’s Mom: It’s very scary. It’s very, very scary.
Daniel’s Mom: I feel like I’m playing this game, which is life or death to me.
Daniel’s Mom: Can’t you just keep your child quiet? (Daniel vocalizing in background) No.
Alison Singer: People have no idea what it’s like to have a child with autism.
Christian’s Mom: Pah, paci? He’s too old for that, he shouldn’t be having that. We’re just judged more harshly and more constantly, and expected to do things that no human being should be expected to do.
Alison Singer: Why is she screaming?
Daniel’s Mom: Why is he hitting himself?
Alison Singer: What are you doing to her? Why are you making her cry?
Christian’s Mom: And I say, well, you know, are you an expert in autism?
Alison Singer: It’s always heartbreaking. When Jodie was on the swings and crying, the other moms are sort of looking and wondering why this 8 and ½ year old was screaming and carrying on, because she didnt wanna get on a swing.
Daniel’s Mom: I would like people to second guess themselves when they look at me, and they think A, I can’t control my kid, or B, I’m abusing my child because he’s screaming. (Daniel grunting) Have a little bit more understanding, and a little bit more compassion and show that to your children, as well.
Danson’s Mom: Now I’m an educator, and I have a child that I have no idea how to teach. Okay, come on in your seat. This morning, I wanted Danson to sit with me and do a puzzle. (Danson screaming) Put that in the puzzle? (Danson babbling) He could care less, you know? When he feels like doing it, he will sit there, and do that whole puzzle in 30 seconds or he won’t. (Danson screaming)
Alison Singer: And I was a grown woman, afraid of the phone ringing, because it was the school principal, calling me, saying she had bitten someone, or she had kicked a kid, or she had hit a teacher.
Daniel’s Mom: And that’s why they have special ed classes, and they don’t want Daniel to be disruptive, they don’t want, a lot of times, for their kids to have to deal with them.
Christian’s Mom: And when he turns 5, I wish so much that he could go to kindergarten here.
Jackson’s Mom: He can’t go to kindergarten. You know, my school district doesn’t have, they don’t have anything appropriate for him.
Alison Singer: There are parents—
Jodie: What are you doing, Mom?
Alison Singer: Who are forced to put their kids in schools that are completely overcrowed, 12 kids and one teacher, and the kids don’t make progress, but I remember, that was a very scary moment for me, when I realized I had sat in the car for about 15 minutes, and actually contemplated putting Jodie in the car, driving off the George Washington Bridge, and that that would be preferable to having to put her in one of these schools. And it’s only because of Lauren, the fact that I have another child, that I probably didn’t do it.
Christian’s Mom: See you later.
Woman: Let me take little Mattias off your hands. I love you.
Christian’s Mom: Say bye-bye. Mattias was four years old when Christian was diagnosed. It just took a lot of the naturalness, the joy of having a baby out of the equation, because we were always filled with fear. Bye, bye.
Alison Singer: And I have Lauren, whose babyhood I missed, because she was two months old when Jodie was diagnosed.
Lauren: I see Pooh Bear’s house. What do you see, Jodie?
Alison Singer: And so, the first two years of Lauren’s life are a complete blur.
Christian’s Mom: He wants to fix Christian, and he makes a big show about examining people.
Lauren: I don’t want anybody to make fun of her.
Christian’s Mom: It’s sad. I forget, soemtimes, that he lost Christian, too.
Lauren: I wish I had a sister without autism.
Jackson’s Mom: When you have a child with autism, I think the rate for divorce is like 80%.
Danson’s Mom: Having a child who needs what Danson needs made it really difficult for me to balance my life, and be a mother, and have a job, and be a wife. I didn’t that marriage what I could’ve, ’cause I had nothing left to give.
Alison Singer: We never have any time to be together. It’s always one of us with Jodie.
Danson’s Mom: It was just an angry time, where we, I think both felt so helpless and did not know what to do and really sort of turned on each other.
Christian’s Mom: It’s very hard to manage the emotional issues, the financial issues are huge.
Jackson’s Mom: We had to borrow money from my parents, we had to borrow money from my sister, so that we could create this environment for the kids, but all the money in the world, the $50,000 that we’re in debt, is all about the autism. (Jackson crying)
Daniel’s Mom: What I spend on the medical activities that the insurance companies are not paying for, it’s a large number.
Jackson’s Mom: We had a big leak in the living room that was coming down like a bucket. It’s been over two years, and those holes are still there, because we don’t have any money to fix that.
Daniel’s Mom: We keep saying that we’re just sending, you know, Daniel to Harvard over and over again, (laughing) every year for the rest of his life.
Jackson’s Mom: We just keep taking out loans to pay the bills, and we pay for special food and extra therapies all out of loans. So you just keep borrowing and you just keep trying, and you just keep being disappointed, and you just keep going broke.
Danson’s Mom: Danson goes through phases where he doesn’t sleep for like two or three weeks, and you’re up all night.
Christian’s Mom: It’s like you have a hangover the next day, but you didn’t have any fun the night before.
Danson’s Mom: The only solace he will find is if we’re driving around. So I have literally driven around in the car the whole night long.
Christian’s Mom: You wake up in like a frat house, like I wake up here, sleeping on the couch, I’m in my other son’s room, I’m there, Christian’s sleeping sideways across our bed, I mean, we just pass out.
Danson’s Mom: It occurs to me that this is insane, like my life is completely insane at this moment.
Daniel’s Mom: I have to live forever. Nothing can happen to me.
Jackson’s Mom: I can never die.
Daniel’s Mom: I don’t think there’s a day that doesn’t go by where I don’t think about oh, what happens when I’m not here? Who’s gonna take care of Daniel?
Jackson’s Mom: I’m panicking, because I didn’t write an updated list of what to do, in case something happens to me. I’ve gotta write who’s in charge of his program, what doctors he goes to, what vitamins and supplements he needs and what the plan is, because it’s all up to me.
Daniel’s Mom: You first get diagnosed, and you say to yourself, I’m gonna do a year of really hard work, and he’s gonna be fine, he’s gonna be better. And tehn, the year comes by, and you’re like, okay, maybe like two years. And tehn maybe like three years, and then you realize, okay, so basically, this is lifelong.
Danson’s Mom: I imagined Little League and trips and vacations and girlfriends, and it’s taken me a very long time to let those dreams go.
Christian’s Mom: Christian’s a human being who’s fighting so hard, like you can’t believe. And what’s been taken from him is, (crying) it’s indescribable.
Jackson’s Mom: Jackson is never gonna get married, and never gonna have kids. When I’m at somebody else’s wedding, and they’re dancing with their mother, what I would do to dance with Jackson.
Daniel’s Mom: He is trying so hard to stay in himself, and I’m trying so hard to pull him out all the time. Look up, let me see your face. Okay.
Christian’s Mom: I think that they have this misconception that all our kids are just mentally retarded, and that’s it, and what can you do, what can be done? And we wanna change that.
Alison Singer: I know that science is making great breakthroughs, and my hope is that by the time Lauren’s ready to have a baby, we’ll have a cure or we’ll understand how to prevent autism.
Daniel’s Mom: I’m never going to say, you know, I quit. It’s not really in my vocabulary, as I assume it’s not in a lot of autistic parents’ vocabulary.
Christian’s Mom: I just cannot accept that you have to throw away this generation of children. No way.
Jackson’s Mom: If you don’t think positively, you won’t make it through the day.
Danson’s Mom: Danson is my greatest teacher, and I know that, and he teaches me something every single day.
Jackson’s Mom: When I see him do something that we’ve worked so hard on, and he’s worked so hard on, it gives me hope that he’ll get there. It’s just gonna take a long time.
Christian’s Mom: He’s very, very loving to me.
Alison Singer: Say, I love you, Mommy.
Jodie: I love you, Mommy, I love you.
Alison Singer: I’ll take that, I’ll take that.