WEBVTT - "I Gave Up Asking 'Why Me?'" 0:00:14.956 --> 0:00:15.396 Pushkin. 0:00:30.476 --> 0:00:33.556 Have you ever noticed these cars with like two three 0:00:33.596 --> 0:00:37.476 teenagers just stopping like waiting for the light. They have 0:00:37.556 --> 0:00:39.516 a music on and the two of them or three 0:00:39.596 --> 0:00:42.596 of them are like singing and dancing, and I'm like 0:00:43.316 --> 0:00:46.876 every time I would be like, oh my God, I 0:00:46.956 --> 0:00:47.916 want a child like that. 0:00:48.916 --> 0:00:51.436 Danny Rashidi always knew she wanted to be a mom. 0:00:52.076 --> 0:00:54.436 She dreamed of raising a kid whose life would be 0:00:54.476 --> 0:00:57.796 filled with carefree moments like singing in the car with friends. 0:00:58.836 --> 0:01:02.916 But when Bannie's child received a significant medical diagnosis, Bannie's 0:01:02.996 --> 0:01:04.076 dreams were upended. 0:01:05.076 --> 0:01:07.516 Just think of it as a videotape that is going 0:01:07.596 --> 0:01:13.356 on in my mind of all this wonderful dreams, and 0:01:13.436 --> 0:01:18.356 you know, everything happy and colorful, and you know, just 0:01:18.396 --> 0:01:24.316 imagine that video stopped and it was blank. There was 0:01:24.516 --> 0:01:28.116 nothing left, not even a little bit nothing. 0:01:31.996 --> 0:01:39.396 On today's episode, Redefining your expectations as a parent, I'm 0:01:39.396 --> 0:01:42.236 Maya Shunker, and this is a slight change of plans, 0:01:42.596 --> 0:01:44.796 a show about who we are and who we needcome 0:01:45.076 --> 0:01:59.076 in the face of a big change. I got to 0:01:59.116 --> 0:02:01.436 know Banni because she's a listener of a slight change 0:02:01.476 --> 0:02:04.396 of plans, and she wrote me a beautiful letter about 0:02:04.436 --> 0:02:07.556 her life story. As I got to know her, I 0:02:07.556 --> 0:02:11.716 felt transformed by her wisdom and life philosophy, and so 0:02:11.756 --> 0:02:14.876 I wanted you to hear her story too. From the 0:02:14.916 --> 0:02:17.356 time Danny was a little girl growing up in Iran, 0:02:17.596 --> 0:02:20.236 she'd always looked forward to becoming a parent one day. 0:02:20.916 --> 0:02:23.676 She loved nurturing and taking care of her little dolls 0:02:24.076 --> 0:02:26.396 and giving them all the love she had within her. 0:02:27.316 --> 0:02:31.716 And then as I was growing older, as a teenager 0:02:31.756 --> 0:02:34.316 and a young adult, I had started to have all 0:02:34.356 --> 0:02:38.076 these plans, like if I had saw some behaviors in 0:02:38.116 --> 0:02:40.516 some parents, I would be like, I would never do 0:02:40.556 --> 0:02:43.796 that to my children. If this happens with my child, 0:02:43.996 --> 0:02:47.516 this would be my reaction, you know, Like inside my head, 0:02:47.716 --> 0:02:55.076 I was always preparing myself constantly for being the best 0:02:55.356 --> 0:03:00.036 parent that I could. So like having children was not 0:03:00.156 --> 0:03:03.076 a question, was a matter of when, and you know 0:03:03.236 --> 0:03:06.996 how many, And so I feel like I had it 0:03:07.156 --> 0:03:08.796 in me growing up. 0:03:10.156 --> 0:03:13.916 In your thirties, you immigrated from Iran to the US 0:03:13.996 --> 0:03:17.676 to continue your medical training and to do your residency here. 0:03:18.556 --> 0:03:22.556 And during that time kind of a magical time, right 0:03:22.596 --> 0:03:25.396 you met your husband, You got the exciting news that 0:03:25.916 --> 0:03:29.236 you were expecting a baby. Girl, Can you take me 0:03:29.316 --> 0:03:34.636 back to the first moment that you saw your daughter, Saba, Oh. 0:03:34.516 --> 0:03:41.956 My goodness, that was the most magical moment of my life. 0:03:42.396 --> 0:03:46.276 I'm holding this little baby, this little perfect baby, after 0:03:46.436 --> 0:03:52.196 a long, long, very tiring delivery, after twenty six hours 0:03:52.236 --> 0:03:57.636 and we were trying. My gosh, Annie, then I'm hauling 0:03:57.676 --> 0:04:06.876 her and her entire life. Like whatever I have had 0:04:07.036 --> 0:04:12.996 planned for her, whatever I have planned to give to her, 0:04:14.116 --> 0:04:16.396 is like playing in my mind like a you know, 0:04:16.676 --> 0:04:21.036 very fast forward video, Like I feel like, what a 0:04:21.076 --> 0:04:24.476 beautiful bride she's gonna make. You know, at that point, 0:04:24.516 --> 0:04:26.596 I knew that she may never want to get married 0:04:26.756 --> 0:04:29.076 or whatever. I mean, that would be her life. But 0:04:29.116 --> 0:04:31.236 then that is as her mother, That is what came 0:04:31.276 --> 0:04:33.996 to my mind that first minute that I'm holding her 0:04:34.036 --> 0:04:36.956 in my arms, and I'm just like looking at her 0:04:36.996 --> 0:04:41.116 like every little thing all like counting her fingers and 0:04:41.236 --> 0:04:44.796 counting her toes and just touching her and feeling her 0:04:45.276 --> 0:04:50.676 and just thinking of the fantastic life that we're going 0:04:50.716 --> 0:04:55.276 to have together, and then just imagining the joy that 0:04:55.356 --> 0:05:00.356 I'll have every second of my life from none just 0:05:00.396 --> 0:05:04.836 by looking at her and just the joy that seeing 0:05:04.876 --> 0:05:09.236 her thrive and being happy and being successful, and who 0:05:09.276 --> 0:05:13.156 is enjoying life, and then me enjoying life because of 0:05:13.196 --> 0:05:13.916 her enjoyment. 0:05:15.276 --> 0:05:19.236 You mentioned imagining the wedding day. What were other images 0:05:19.276 --> 0:05:21.996 or milestones that came to mind as you were playing 0:05:21.996 --> 0:05:23.476 this movie real in your mind? 0:05:24.556 --> 0:05:27.636 Have you ever noticed these cars with like two three 0:05:27.676 --> 0:05:31.596 teenagers just stopping like waiting for the light, and then 0:05:31.636 --> 0:05:33.836 they are like, they have a music on and the 0:05:33.876 --> 0:05:36.156 two of them or three of them are like singing 0:05:36.196 --> 0:05:40.836 and dancing. Yeah, And I'm like every time I would 0:05:40.876 --> 0:05:44.196 be like, oh my god, good for their parents. I 0:05:44.236 --> 0:05:47.436 want to try it like that, you know, like having 0:05:47.476 --> 0:05:51.716 that driver's license and going out with her friends, having 0:05:51.836 --> 0:05:55.836 that graduation, just picking whichever college she wants, but then 0:05:55.916 --> 0:05:59.516 like graduating and then me being that prod mother, having 0:05:59.596 --> 0:06:02.956 her boyfriend or girlfriend or whoever she wants, and then 0:06:03.036 --> 0:06:05.916 come back for dinner and then you know, we all 0:06:05.956 --> 0:06:08.956 sit and get introduced to this a special person. And 0:06:09.156 --> 0:06:11.596 then the other thing was that Maya, I have to 0:06:11.636 --> 0:06:14.756 tell you this. The other thing was that I grew 0:06:14.876 --> 0:06:24.876 up with some cultural and some social limitations and just 0:06:24.996 --> 0:06:29.396 thinking that my daughter didn't have to go through those limitations. 0:06:30.236 --> 0:06:35.076 She could be whoever she wanted. She had the opportunity 0:06:35.236 --> 0:06:42.516 to choose whatever she wanted her career, her family, her activities, 0:06:42.756 --> 0:06:47.316 her hobbies, you know, the way she dresses her group 0:06:47.356 --> 0:06:53.156 of friends. That was like a relief for me. 0:06:53.276 --> 0:06:57.996 Also, tell me a bit more about that. So what 0:06:58.036 --> 0:06:59.676 were those kinds of limitations. 0:07:00.276 --> 0:07:04.876 So when I was growing up, women had less freedom 0:07:05.196 --> 0:07:09.796 in Iran than men. For example, you had to be covered, 0:07:10.276 --> 0:07:13.436 you had to be dressed a certain way, you had 0:07:13.476 --> 0:07:17.956 to be behaving a certain way, Like if I was 0:07:18.036 --> 0:07:21.436 introduced to a male person, I couldn't shake hands with them. 0:07:22.156 --> 0:07:25.276 Or a woman could not have a passport without a 0:07:25.276 --> 0:07:28.356 written permission from her husband, even though she is like 0:07:28.796 --> 0:07:31.316 a professor of the university and wants to attend an 0:07:31.316 --> 0:07:35.116 international conference and have a lecture there. But there still 0:07:35.276 --> 0:07:38.476 you have to have that permission from your husband. And 0:07:38.516 --> 0:07:44.356 then also like out in the society, no singing, no dancing, 0:07:44.756 --> 0:07:49.556 no laughing out loud. You couldn't be two three young 0:07:49.716 --> 0:07:55.636 adults having your music loud in the car and dancing 0:07:55.876 --> 0:08:01.436 and singing along. So back to that moment of holding 0:08:01.476 --> 0:08:03.956 my baby in my arms, I was just like thinking, 0:08:04.036 --> 0:08:10.836 oh my god, now she can be a happy, singing, dancing, lood, cheerful, 0:08:11.316 --> 0:08:14.596 jumping up and done little girl, and grew up like 0:08:14.716 --> 0:08:19.796 that and there is nothing to limit her. And that 0:08:20.436 --> 0:08:25.396 gave me this satisfaction and sense of safety. 0:08:26.836 --> 0:08:30.716 When Saba was around fifteen months old, you started to 0:08:30.836 --> 0:08:33.716 notice that she was behaving differently than some of your 0:08:33.756 --> 0:08:36.396 friend's kids. Yes, do you mind telling me a bit 0:08:36.436 --> 0:08:36.996 more about that? 0:08:37.556 --> 0:08:42.796 Yes? Yes, So I remember this very sweet coworker that 0:08:42.836 --> 0:08:46.876 I had. His daughter is a few weeks older than 0:08:46.916 --> 0:08:50.116 my daughter, and he was sharing a video on his 0:08:50.276 --> 0:08:56.996 cellphone of his daughter playing, playing with her toys, feeding 0:08:57.036 --> 0:09:01.396 her Mickey Mouse Doyle, you know, being interactive with the 0:09:01.476 --> 0:09:04.476 camera and stuff like that. And then I was thinking, 0:09:04.516 --> 0:09:07.436 oh my god, what a huge difference a few weeks 0:09:07.436 --> 0:09:11.196 makes because Saba doesn't do any of these. She's not interactive, 0:09:11.236 --> 0:09:14.196 and I'm taking videos of her. She's not as interactive. 0:09:14.516 --> 0:09:17.636 She never plays with her doll the way like I was. 0:09:17.716 --> 0:09:19.836 In my mind, I was thinking, Okay, this is something 0:09:19.876 --> 0:09:23.956 that will emerge eventually, but maybe probably she's not ready 0:09:24.596 --> 0:09:28.476 for that yet. And then suddenly I went to this 0:09:28.796 --> 0:09:34.356 like defense mode. No, don't compare your baby with anybody 0:09:34.356 --> 0:09:38.556 else's baby. You know, comparison takes the joy away. I'm 0:09:38.596 --> 0:09:41.396 not supposed to compare Okay, She'll get to it whenever 0:09:41.476 --> 0:09:44.236 it is time for her. And I kind of like 0:09:44.316 --> 0:09:47.596 pushed that thinking back in my mind and then went 0:09:47.636 --> 0:09:50.676 on with my life. So that was the first thing 0:09:50.756 --> 0:09:56.276 around like fifteen months old maybe, And then in the 0:09:56.316 --> 0:10:01.556 next few months that was when she regressed a little 0:10:01.556 --> 0:10:05.436 bit too, meaning that the skills that she already had 0:10:06.276 --> 0:10:10.556 she lost them little by a little, like that eye 0:10:10.556 --> 0:10:14.676 contact that was inconsistent. No, it was not there anymore, 0:10:14.916 --> 0:10:19.556 like no eye contact. She had no words. She even 0:10:19.716 --> 0:10:22.796 lost the babeling, like you know how they start babbling 0:10:22.876 --> 0:10:26.876 like baba ba my mama. And then that was always 0:10:26.956 --> 0:10:29.756 a sign of her being cheerful to me, and then 0:10:29.796 --> 0:10:36.636 she lost that. So when it really hit us was 0:10:37.916 --> 0:10:41.036 we had went on a vacation and then we came back, 0:10:41.076 --> 0:10:44.156 and then Sabah and I went to visit my brother's family, 0:10:44.716 --> 0:10:48.836 and the few days that we were there, I noticed 0:10:48.876 --> 0:10:53.556 that she's totally mute. No noise is coming out of 0:10:53.596 --> 0:10:56.196 her except if I tickled her and she would be 0:10:56.276 --> 0:11:01.636 laughing or if she was crying. So we came back, 0:11:02.796 --> 0:11:06.716 I started my job on a Thursday. I still remember 0:11:06.796 --> 0:11:12.116 it was Thursday. I go to work Thursday Friday. That weekend, 0:11:12.156 --> 0:11:17.356 I'm staying home with Saba, and the entire weekend I 0:11:17.396 --> 0:11:21.076 cannot There is no noise coming out of her and 0:11:21.196 --> 0:11:23.956 her interactions like she used to play pickaboo with us. 0:11:24.076 --> 0:11:27.996 Now she was not, so all those interactions were lost. 0:11:28.796 --> 0:11:32.156 And the next Monday morning, when I was driving to work, 0:11:32.236 --> 0:11:35.636 I was crying because I knew that something was wrong. 0:11:37.436 --> 0:11:42.916 So you ended up taking Saba to a pediatric neurologist. 0:11:43.116 --> 0:11:45.316 If you can bring me back to that moment, Benny, 0:11:46.116 --> 0:11:48.916 what do you remember his telling you. 0:11:49.476 --> 0:11:55.636 So we could squeeze ourselves in to a pediatric neurologist 0:11:56.556 --> 0:12:00.756 schedule on December thirty, two thousand and nine. And then 0:12:01.116 --> 0:12:04.836 my husband and I and Saba we are there waiting 0:12:04.876 --> 0:12:09.396 for him. I noticed that there are these mirrors. One 0:12:09.436 --> 0:12:12.556 side of the wall is a mirror, and this is 0:12:12.596 --> 0:12:15.356 one of those mirrors that they can actually see through, 0:12:15.516 --> 0:12:18.956 so they can just watch you and your daughter actually 0:12:19.036 --> 0:12:21.916 watch the patient and then see how their interaction is 0:12:21.956 --> 0:12:24.596 with their parents. And you know, with the toys. The 0:12:24.756 --> 0:12:29.356 room is by the way full of toys, and Saba 0:12:29.436 --> 0:12:32.556 doesn't seem to be interested in any of them except 0:12:32.636 --> 0:12:35.596 for I think a book that she was like, you know, 0:12:35.796 --> 0:12:39.196 looking at, but she was not exploring for sure. She 0:12:39.276 --> 0:12:42.676 was just like sitting on the floor just looking at 0:12:42.676 --> 0:12:47.276 that book, flipping the pages and just sitting there minding 0:12:47.356 --> 0:12:50.836 her own business. And then the doctor walks in and 0:12:52.196 --> 0:12:55.036 it didn't take him long. It did not take him 0:12:55.076 --> 0:13:00.196 a long time. He just after maybe a short evaluation 0:13:00.316 --> 0:13:03.036 and a short physical, he just looked at us and 0:13:03.076 --> 0:13:08.916 he said, I think it is autism. And with whatever 0:13:08.996 --> 0:13:15.916 he could see, it was the severe end of the spectrum. 0:13:15.956 --> 0:13:18.356 And what did the severe end of the spectrum look 0:13:18.476 --> 0:13:19.756 like for Saba? 0:13:19.876 --> 0:13:25.836 Oh, with profound autism, what comes is severe limitations in communication, 0:13:26.196 --> 0:13:32.756 severe severe limitations including in talking. And on top of autism, 0:13:32.796 --> 0:13:35.676 Saba has apraxia also, and that is she doesn't have 0:13:35.756 --> 0:13:39.996 control over her lips and mouth muscles, tongue and lips 0:13:40.076 --> 0:13:43.916 and all mouth muscles. So even if she is to 0:13:44.116 --> 0:13:47.676 imitate you saying a word, she cannot because she doesn't 0:13:47.716 --> 0:13:50.996 have the control over that area. Even to imitate and 0:13:51.076 --> 0:13:57.996 making the same word. Then there is these extreme, extreme 0:13:58.196 --> 0:14:04.316 sensory issues. Just whatever that is that sounds normal to you, 0:14:04.436 --> 0:14:07.756 and I it will be very, very overwhelming for her. 0:14:08.716 --> 0:14:13.196 And on top of that comes developmental delay. So whatever 0:14:13.636 --> 0:14:16.756 like the developmental milestones that typical kids can get to, 0:14:17.236 --> 0:14:24.876 including puddy training, for example, they come much much later. 0:14:25.516 --> 0:14:28.836 If you're lucky, they come much much later, or they 0:14:28.916 --> 0:14:29.676 may never come. 0:14:31.236 --> 0:14:34.476 Danny, I'm wondering, how did you process this news? 0:14:36.396 --> 0:14:38.836 Just think of it as a videotape that is going 0:14:38.876 --> 0:14:44.676 on in my mind of all these wonderful dreams and 0:14:44.716 --> 0:14:50.436 you know, everything happy and colorful and music y and energetic, 0:14:51.316 --> 0:14:57.716 everything hopeful. Just imagine that video stopped. It was all 0:14:57.756 --> 0:15:03.356 blank and dark. All those dreams of driving and graduation 0:15:03.716 --> 0:15:08.436 and significant other and you know, grandchildren and Thanksgiving dinners 0:15:08.436 --> 0:15:13.836 and all of those We're all shattered and there was 0:15:14.796 --> 0:15:18.956 there was nothing left, not even a little bit nothing. 0:15:20.036 --> 0:15:23.556 Yeah, So how did you move forward? 0:15:25.076 --> 0:15:28.716 Having an infant, having a child with autism, a severe 0:15:28.796 --> 0:15:35.036 autism is hard. You have all those sleepless nights that 0:15:35.716 --> 0:15:40.196 you are tired. Your entire family is tired, you know, 0:15:40.356 --> 0:15:42.556 And then you feel bad for your child that cannot 0:15:42.596 --> 0:15:45.516 fall asleep too. She wants to fall asleep, but she cannot. 0:15:47.756 --> 0:15:51.396 Then there is the poop is mearing playing with their poop. 0:15:51.996 --> 0:15:56.156 One a specific night that I thought, okay, she fell asleep, 0:15:56.236 --> 0:15:59.916 she's quiet in her bed, couldn't hear any noises or 0:15:59.956 --> 0:16:03.076 any sounds from her room. Just to open the room, 0:16:03.316 --> 0:16:06.236 to open the door, and then see that, okay, she 0:16:06.316 --> 0:16:10.716 has been like busy in playing with her poop. And 0:16:10.756 --> 0:16:17.876 there is like poop everywhere in the bedroom, and there 0:16:17.956 --> 0:16:21.956 is like because of the limited communication, the comprehension is there, 0:16:22.116 --> 0:16:25.596 the communication is not there. So there is all these 0:16:26.396 --> 0:16:29.916 tantrums and kicking and screaming, and then you have all 0:16:29.916 --> 0:16:33.716 these bite marks on your arm. There is like hair pulling. 0:16:34.716 --> 0:16:38.636 She has bruises on her arm, and her body of 0:16:38.716 --> 0:16:42.516 self injurious like she would pinch herself. Part of these 0:16:42.516 --> 0:16:45.156 sensory issues. And then part of it is just out 0:16:45.196 --> 0:16:52.276 of frustration and anxiety. And there's all this unknown and 0:16:52.396 --> 0:16:56.476 most importantly, you have to learn how to deal with 0:16:56.716 --> 0:16:58.716 all the emotions that convey back. 0:17:01.116 --> 0:17:02.116 Tell me more about that. 0:17:06.676 --> 0:17:11.276 First of all, I felt guilt and I hated myself 0:17:12.556 --> 0:17:16.116 because I felt like I had You know, there is 0:17:16.196 --> 0:17:21.076 this illusion of control like I felt I was I 0:17:21.236 --> 0:17:24.596 was somehow responsible for that, Like what did I do 0:17:24.756 --> 0:17:30.596 wrong in the you know, everyday thing I was like 0:17:30.756 --> 0:17:37.436 just thinking, was that the peri natal vitamins that I 0:17:37.436 --> 0:17:40.676 didn't you know, I skipped them a few days? Was that? That? 0:17:41.516 --> 0:17:41.716 Was that? 0:17:41.796 --> 0:17:45.036 The shampoo, the new shampoo that I used during my pregnancy? 0:17:46.036 --> 0:17:50.876 What did I do wrong that got us to this point? 0:17:52.116 --> 0:17:56.396 And then there was also another version of guilt that 0:17:56.436 --> 0:18:02.956 like in a spirituality, what am I guilty of that 0:18:03.036 --> 0:18:08.596 God or universe is punishing me for? And that was 0:18:08.676 --> 0:18:11.316 much harder there because I felt like I was a 0:18:11.356 --> 0:18:15.876 bad person. I am this bad person and I'm getting 0:18:15.956 --> 0:18:22.516 punished because of me being this bad person. So why why? 0:18:22.556 --> 0:18:25.836 What did I do wrong? I couldn't think of anything. 0:18:25.916 --> 0:18:30.996 But then I was like feeling guilty and if I 0:18:31.076 --> 0:18:36.036 did something wrong, if I'm guilty of anything, why is 0:18:36.076 --> 0:18:40.116 she being punished for that? Why is she going through 0:18:41.596 --> 0:18:48.356 all this hardship for what reason? Having that profound autism 0:18:48.436 --> 0:18:52.116 is not easy? And why is that she has to 0:18:52.156 --> 0:18:55.316 go through it? And then the other thing was that 0:18:55.476 --> 0:19:01.556 I got into this state of anxiety. You know, growing 0:19:01.676 --> 0:19:06.876 up as a young adult, I was always believing that, Okay, 0:19:07.956 --> 0:19:13.316 you plan life well and you work hard, and you 0:19:13.516 --> 0:19:19.316 get to whatever you want sooner or later. But now 0:19:19.716 --> 0:19:23.476 I was like, I planned it well. I really worked, 0:19:23.516 --> 0:19:26.116 you know, I really I did whatever I could to 0:19:26.156 --> 0:19:29.436 be a good mother during my pregnancy before my pregnancy, 0:19:29.996 --> 0:19:33.156 and I really really really worked hard, and I really 0:19:33.196 --> 0:19:38.276 really really felt prepared for that. Yeah, but then it 0:19:38.316 --> 0:19:42.596 didn't go as planned. So I lost my trust to 0:19:42.836 --> 0:19:48.076 everything in life. You know, I'm like, anything bad can 0:19:48.116 --> 0:19:50.876 happen to me right now, the sky can fall off 0:19:51.396 --> 0:19:55.636 for no reason. So I was in this kind of 0:19:55.716 --> 0:20:01.036 like a very defensive, very like ready for anything to 0:20:01.116 --> 0:20:06.196 go bad mode, And that brought me anxiety. 0:20:09.756 --> 0:20:11.956 We'll be back in a moment with a slight change 0:20:11.996 --> 0:20:25.916 of plans. About a year after Bennie's daughter received her diagnosis, 0:20:26.036 --> 0:20:29.636 Bennie settled into a new routine. In the morning, she 0:20:29.756 --> 0:20:32.556 dropped Saba off at a preschool for children with autism, 0:20:33.356 --> 0:20:35.716 and on the drive home, she'd stop by the beach 0:20:35.836 --> 0:20:38.476 to take a walk by herself and think things through. 0:20:39.316 --> 0:20:43.116 On this one morning, Bennie felt particularly reflective. 0:20:43.436 --> 0:20:47.276 So I had all this time to just walk and 0:20:47.396 --> 0:20:54.596 have these inner conversations with me, thinking why me, why this, 0:20:55.596 --> 0:21:00.956 why her? What did I do? Started feeling pity for 0:21:01.076 --> 0:21:04.516 myself and for her, and then feel like I'm a victim. 0:21:05.196 --> 0:21:07.796 And then I see this bird. I see, you know, 0:21:08.236 --> 0:21:10.396 you just see all these groups of birds, and then 0:21:10.436 --> 0:21:13.876 suddenly I can see this bird that has only one leg, 0:21:15.796 --> 0:21:20.636 and I notice that she is moving slower than the 0:21:20.676 --> 0:21:27.396 other birds, but still she's just picking up food from 0:21:27.436 --> 0:21:31.156 the ground, and still she's flying a little bit around, 0:21:31.436 --> 0:21:34.396 and she's part of this group of birds. And I 0:21:34.476 --> 0:21:39.396 didn't really notice the other birds treating her differently, like 0:21:39.556 --> 0:21:42.916 she was part of this group. And she was still like, 0:21:42.996 --> 0:21:46.236 you know, making birdly noises and everything, and was like 0:21:47.076 --> 0:21:52.876 living her life despite her one leg missing. At that 0:21:53.076 --> 0:21:56.956 same moment, I was thinking, this bird didn't do anything wrong. 0:21:57.676 --> 0:22:01.156 Maybe there is no why me, Maybe that is not 0:22:01.316 --> 0:22:04.796 the question. Maybe I shouldn't be looking for any reason. 0:22:05.956 --> 0:22:08.676 This is part of life, this is part of nature. 0:22:09.476 --> 0:22:12.836 So from that moment, I just gave up asking all 0:22:12.876 --> 0:22:17.836 those questions of why me, why her? What did I 0:22:17.956 --> 0:22:23.276 do wrong? What is the reason? All that matters is 0:22:23.436 --> 0:22:27.236 what we have right now and how to get the 0:22:27.276 --> 0:22:31.236 best out of it and just focus on the things 0:22:31.236 --> 0:22:35.436 that we have. Like I feel like if there's an 0:22:35.436 --> 0:22:38.356 earthquake right now and all of us die the moment, 0:22:38.476 --> 0:22:42.596 I'm dying I don't want to be thinking, oh my god, 0:22:42.796 --> 0:22:47.076 I spent all this time emphasizing on how miserable we are. 0:22:47.636 --> 0:22:51.356 I just want to be thinking at least I did 0:22:51.476 --> 0:22:55.476 whatever I could, and at least I enjoyed however much 0:22:55.516 --> 0:22:57.676 of it that I could, and I helped my loved 0:22:57.716 --> 0:22:59.276 ones enjoy it. 0:23:00.396 --> 0:23:02.836 So how did this moment at the beach affect your 0:23:02.836 --> 0:23:04.196 mindset moving forward? 0:23:05.716 --> 0:23:12.996 So that moment a very very very critical moment that 0:23:13.196 --> 0:23:16.436 I can remember and I can't pinpoint. But it has 0:23:16.556 --> 0:23:17.516 been a process. 0:23:18.076 --> 0:23:18.676 Absolutely. 0:23:19.156 --> 0:23:21.676 It has been a long process. And still it is 0:23:21.716 --> 0:23:25.196 a process. You know, I think that, okay, I could 0:23:25.196 --> 0:23:29.636 handle it better today than yesterday, this week than last week. 0:23:29.716 --> 0:23:32.396 It is a process. But then with that moment, and 0:23:32.436 --> 0:23:36.956 then maybe the next few weeks or months after that, 0:23:36.956 --> 0:23:42.956 that that pain went away. It was not painful anymore. 0:23:45.076 --> 0:23:48.476 I was not a victim anymore. My daughter was not 0:23:48.556 --> 0:23:54.076 a victim anymore, My family was not a victim anymore. 0:23:56.236 --> 0:23:59.516 Did the shift change the way that you approached your 0:23:59.596 --> 0:24:03.756 day to day interactions with Saba and your family life overall? 0:24:03.916 --> 0:24:10.516 Oh, definitely, definitely. I gradually started to live life again 0:24:11.476 --> 0:24:16.876 by changing my perspective, by changing my expectations I could 0:24:17.156 --> 0:24:21.276 enjoy life again, and I'm very grateful for that, very 0:24:21.356 --> 0:24:25.476 much so. 0:24:23.556 --> 0:24:26.356 So, Benny. It's been over a decade since that day 0:24:26.476 --> 0:24:30.996 in the doctor's office when you received Sava's diagnosis. Sava 0:24:31.076 --> 0:24:34.876 is now fifteen years old, and I'm wondering what is 0:24:34.956 --> 0:24:36.316 life like for you now? 0:24:37.556 --> 0:24:43.796 Life is very beautiful, life is good, and is really 0:24:44.036 --> 0:24:49.836 really really really hard. But then what makes it bearable 0:24:50.716 --> 0:24:55.836 is you know, Maya, For the longest time, I was 0:24:55.876 --> 0:24:59.516 trying for my family to be as close to a 0:24:59.596 --> 0:25:05.996 typical family as possible, and that was tiring, that was exhausting. 0:25:07.076 --> 0:25:10.596 The moment that I accepted that, guess what, we are 0:25:10.636 --> 0:25:15.116 not a typical family. We are not, then that exhaustion 0:25:15.276 --> 0:25:21.676 went away. Because maybe letting go of trying to be 0:25:22.196 --> 0:25:27.996 typical and then instead just try to get to the 0:25:28.116 --> 0:25:32.556 best or to the happiest that is possible for you 0:25:33.436 --> 0:25:38.396 as a special need family is the answer. Maybe maybe 0:25:38.436 --> 0:25:39.876 that was the answer for me. 0:25:40.956 --> 0:25:43.876 You mentioned that life is still very, very, very hard, 0:25:43.916 --> 0:25:48.556 and one I so appreciate your honesty and your candor, 0:25:48.596 --> 0:25:52.196 and I think that's that's such an important part of 0:25:52.236 --> 0:25:55.516 your story right right, that things can continue to be 0:25:55.676 --> 0:25:59.796 really really really hard, and you can still find beauty 0:26:00.036 --> 0:26:03.396 and joy. What are some of the current challenges that 0:26:03.516 --> 0:26:04.996 you're you're facing as a family. 0:26:07.396 --> 0:26:10.676 One of the major challenges that we have right now 0:26:11.156 --> 0:26:15.876 is that now she is fifteen years old and she 0:26:16.036 --> 0:26:21.716 has the body of a mature woman. She's a little 0:26:21.756 --> 0:26:26.556 bit shorter than I am, and she's heavy, and things 0:26:26.596 --> 0:26:30.556 that were, you know, just controlling her emotions or controlling 0:26:30.596 --> 0:26:33.916 her impulses when she was little was much easier. I 0:26:33.916 --> 0:26:36.236 could just grab her and go, Like if she wanted 0:26:36.276 --> 0:26:38.476 to touch something that she was not supposed to, or 0:26:38.556 --> 0:26:41.236 if she wanted to just run towards something that she 0:26:41.356 --> 0:26:44.956 was not supposed to, I could physically stop her. But 0:26:44.996 --> 0:26:49.156 then right now we don't have that, So helping her 0:26:49.476 --> 0:26:57.396 control her body and just stop herself when her body 0:26:57.516 --> 0:27:03.196 is doing something inappropriate is much more challenging than it 0:27:03.276 --> 0:27:09.676 was before. And still with frustration, tantrums are still there, 0:27:10.396 --> 0:27:14.676 making you know, screamings and stuff are still there, and 0:27:15.076 --> 0:27:18.756 we're working on them work in progress, and we do 0:27:18.836 --> 0:27:22.836 see progresses that be by the way, celebrate, but then 0:27:22.956 --> 0:27:24.916 there are still so many challenges. 0:27:26.036 --> 0:27:28.716 I want to talk about those days where your feelings 0:27:28.756 --> 0:27:32.796 lie somewhere in the middle where you're not quite feeling joy, 0:27:32.836 --> 0:27:37.116 but you're also not feeling deep sadness or frustration or despair. 0:27:38.796 --> 0:27:41.276 Because I have to believe that on the days where 0:27:41.316 --> 0:27:45.716 you're simply feeling neutral towards things that you're not reacting 0:27:45.756 --> 0:27:48.316 as you might have in the past, that that also 0:27:48.396 --> 0:27:50.596 is a big win that should be celebrated. 0:27:51.676 --> 0:27:56.236 That is true, Mayad. There are actually very many days 0:27:56.276 --> 0:28:01.836 that I feel neutral through things, very many days, but 0:28:01.956 --> 0:28:08.556 then I feel like not feeling frustrated is a big win. 0:28:09.196 --> 0:28:13.916 And those days because like these challenges. Like everybody in life, 0:28:13.956 --> 0:28:16.796 we all go through challenges, so they are like everyday 0:28:16.916 --> 0:28:22.956 challenges for us. And I feel like coming from a 0:28:23.036 --> 0:28:30.756 place that every moment of every day is torturous to 0:28:30.956 --> 0:28:39.476 a place that most moments of most days are neutral 0:28:40.156 --> 0:28:43.636 is huge. At least I think for me it has 0:28:43.676 --> 0:28:45.276 been huge. 0:28:45.876 --> 0:28:48.596 What do you want people to know about your family 0:28:48.676 --> 0:28:51.276 that you think is so often misunderstood? What do you 0:28:51.276 --> 0:28:51.876 want to share? 0:28:52.716 --> 0:28:57.716 Oh, one major thing, don't feel bad for us. We 0:28:57.876 --> 0:29:01.836 are a happy family. We may not be a typical family. 0:29:02.236 --> 0:29:05.316 We are not. We are far from a typical family, 0:29:05.956 --> 0:29:12.396 but we are a very happy family. So don't cry 0:29:12.596 --> 0:29:15.836 for us. It's okay if you want to cry with 0:29:15.956 --> 0:29:24.956 us at times, But that is one thing. Do not 0:29:25.156 --> 0:29:28.076