Pushkin.
Have you ever noticed these cars with like two three teenagers just stopping like waiting for the light. They have a music on and the two of them or three of them are like singing and dancing, and I'm like every time I would be like, oh my God, I want a child like that.
Danny Rashidi always knew she wanted to be a mom. She dreamed of raising a kid whose life would be filled with carefree moments like singing in the car with friends. But when Bannie's child received a significant medical diagnosis, Bannie's dreams were upended.
Just think of it as a videotape that is going on in my mind of all this wonderful dreams, and you know, everything happy and colorful, and you know, just imagine that video stopped and it was blank. There was nothing left, not even a little bit nothing.
On today's episode, Redefining your expectations as a parent, I'm Maya Shunker, and this is a slight change of plans, a show about who we are and who we needcome in the face of a big change. I got to know Banni because she's a listener of a slight change of plans, and she wrote me a beautiful letter about her life story. As I got to know her, I felt transformed by her wisdom and life philosophy, and so
I wanted you to hear her story too. From the time Danny was a little girl growing up in Iran, she'd always looked forward to becoming a parent one day. She loved nurturing and taking care of her little dolls and giving them all the love she had within her.
And then as I was growing older, as a teenager and a young adult, I had started to have all these plans, like if I had saw some behaviors in some parents, I would be like, I would never do that to my children. If this happens with my child, this would be my reaction, you know, Like inside my head, I was always preparing myself constantly for being the best
parent that I could. So like having children was not a question, was a matter of when, and you know how many, And so I feel like I had it in me growing up.
In your thirties, you immigrated from Iran to the US to continue your medical training and to do your residency here. And during that time kind of a magical time, right you met your husband, You got the exciting news that you were expecting a baby. Girl, Can you take me back to the first moment that you saw your daughter, Saba, Oh.
My goodness, that was the most magical moment of my life. I'm holding this little baby, this little perfect baby, after a long, long, very tiring delivery, after twenty six hours and we were trying. My gosh, Annie, then I'm hauling her and her entire life. Like whatever I have had planned for her, whatever I have planned to give to her, is like playing in my mind like a you know, very fast forward video, Like I feel like, what a
beautiful bride she's gonna make. You know, at that point, I knew that she may never want to get married
or whatever. I mean, that would be her life. But then that is as her mother, That is what came to my mind that first minute that I'm holding her in my arms, and I'm just like looking at her like every little thing all like counting her fingers and counting her toes and just touching her and feeling her and just thinking of the fantastic life that we're going to have together, and then just imagining the joy that I'll have every second of my life from none just
by looking at her and just the joy that seeing her thrive and being happy and being successful, and who is enjoying life, and then me enjoying life because of her enjoyment.
You mentioned imagining the wedding day. What were other images or milestones that came to mind as you were playing this movie real in your mind?
Have you ever noticed these cars with like two three teenagers just stopping like waiting for the light, and then they are like, they have a music on and the two of them or three of them are like singing and dancing. Yeah, And I'm like every time I would
be like, oh my god, good for their parents. I want to try it like that, you know, like having that driver's license and going out with her friends, having that graduation, just picking whichever college she wants, but then like graduating and then me being that prod mother, having her boyfriend or girlfriend or whoever she wants, and then come back for dinner and then you know, we all sit and get introduced to this a special person. And then the other thing was that Maya, I have to
tell you this. The other thing was that I grew up with some cultural and some social limitations and just thinking that my daughter didn't have to go through those limitations. She could be whoever she wanted. She had the opportunity to choose whatever she wanted her career, her family, her activities, her hobbies, you know, the way she dresses her group of friends. That was like a relief for me.
Also, tell me a bit more about that. So what were those kinds of limitations.
So when I was growing up, women had less freedom in Iran than men. For example, you had to be covered, you had to be dressed a certain way, you had to be behaving a certain way, Like if I was introduced to a male person, I couldn't shake hands with them. Or a woman could not have a passport without a written permission from her husband, even though she is like a professor of the university and wants to attend an international conference and have a lecture there. But there still
you have to have that permission from your husband. And then also like out in the society, no singing, no dancing, no laughing out loud. You couldn't be two three young adults having your music loud in the car and dancing and singing along. So back to that moment of holding my baby in my arms, I was just like thinking, oh my god, now she can be a happy, singing, dancing, lood, cheerful, jumping up and done little girl, and grew up like
that and there is nothing to limit her. And that gave me this satisfaction and sense of safety.
When Saba was around fifteen months old, you started to notice that she was behaving differently than some of your friend's kids. Yes, do you mind telling me a bit more about that?
Yes? Yes, So I remember this very sweet coworker that I had. His daughter is a few weeks older than my daughter, and he was sharing a video on his cellphone of his daughter playing, playing with her toys, feeding her Mickey Mouse Doyle, you know, being interactive with the camera and stuff like that. And then I was thinking, oh my god, what a huge difference a few weeks makes because Saba doesn't do any of these. She's not interactive, and I'm taking videos of her. She's not as interactive.
She never plays with her doll the way like I was. In my mind, I was thinking, Okay, this is something that will emerge eventually, but maybe probably she's not ready for that yet. And then suddenly I went to this like defense mode. No, don't compare your baby with anybody else's baby. You know, comparison takes the joy away. I'm not supposed to compare Okay, She'll get to it whenever it is time for her. And I kind of like pushed that thinking back in my mind and then went
on with my life. So that was the first thing around like fifteen months old maybe, And then in the next few months that was when she regressed a little bit too, meaning that the skills that she already had she lost them little by a little, like that eye contact that was inconsistent. No, it was not there anymore, like no eye contact. She had no words. She even lost the babeling, like you know how they start babbling
like baba ba my mama. And then that was always a sign of her being cheerful to me, and then she lost that. So when it really hit us was we had went on a vacation and then we came back, and then Sabah and I went to visit my brother's family, and the few days that we were there, I noticed that she's totally mute. No noise is coming out of her except if I tickled her and she would be laughing or if she was crying. So we came back, I started my job on a Thursday. I still remember
it was Thursday. I go to work Thursday Friday. That weekend, I'm staying home with Saba, and the entire weekend I cannot There is no noise coming out of her and her interactions like she used to play pickaboo with us. Now she was not, so all those interactions were lost. And the next Monday morning, when I was driving to work, I was crying because I knew that something was wrong.
So you ended up taking Saba to a pediatric neurologist. If you can bring me back to that moment, Benny, what do you remember his telling you.
So we could squeeze ourselves in to a pediatric neurologist schedule on December thirty, two thousand and nine. And then my husband and I and Saba we are there waiting for him. I noticed that there are these mirrors. One side of the wall is a mirror, and this is one of those mirrors that they can actually see through, so they can just watch you and your daughter actually watch the patient and then see how their interaction is
with their parents. And you know, with the toys. The room is by the way full of toys, and Saba doesn't seem to be interested in any of them except for I think a book that she was like, you know, looking at, but she was not exploring for sure. She was just like sitting on the floor just looking at that book, flipping the pages and just sitting there minding her own business. And then the doctor walks in and it didn't take him long. It did not take him
a long time. He just after maybe a short evaluation and a short physical, he just looked at us and he said, I think it is autism. And with whatever he could see, it was the severe end of the spectrum.
And what did the severe end of the spectrum look like for Saba?
Oh, with profound autism, what comes is severe limitations in communication, severe severe limitations including in talking. And on top of autism, Saba has apraxia also, and that is she doesn't have control over her lips and mouth muscles, tongue and lips and all mouth muscles. So even if she is to imitate you saying a word, she cannot because she doesn't have the control over that area. Even to imitate and making the same word. Then there is these extreme, extreme
sensory issues. Just whatever that is that sounds normal to you, and I it will be very, very overwhelming for her. And on top of that comes developmental delay. So whatever like the developmental milestones that typical kids can get to, including puddy training, for example, they come much much later. If you're lucky, they come much much later, or they may never come.
Danny, I'm wondering, how did you process this news?
Just think of it as a videotape that is going on in my mind of all these wonderful dreams and you know, everything happy and colorful and music y and energetic, everything hopeful. Just imagine that video stopped. It was all blank and dark. All those dreams of driving and graduation and significant other and you know, grandchildren and Thanksgiving dinners and all of those We're all shattered and there was there was nothing left, not even a little bit nothing.
Yeah, So how did you move forward?
Having an infant, having a child with autism, a severe autism is hard. You have all those sleepless nights that you are tired. Your entire family is tired, you know, And then you feel bad for your child that cannot fall asleep too. She wants to fall asleep, but she cannot. Then there is the poop is mearing playing with their poop. One a specific night that I thought, okay, she fell asleep, she's quiet in her bed, couldn't hear any noises or
any sounds from her room. Just to open the room, to open the door, and then see that, okay, she has been like busy in playing with her poop. And there is like poop everywhere in the bedroom, and there is like because of the limited communication, the comprehension is there, the communication is not there. So there is all these tantrums and kicking and screaming, and then you have all these bite marks on your arm. There is like hair pulling. She has bruises on her arm, and her body of
self injurious like she would pinch herself. Part of these sensory issues. And then part of it is just out of frustration and anxiety. And there's all this unknown and most importantly, you have to learn how to deal with all the emotions that convey back.
Tell me more about that.
First of all, I felt guilt and I hated myself because I felt like I had You know, there is this illusion of control like I felt I was I was somehow responsible for that, Like what did I do wrong in the you know, everyday thing I was like just thinking, was that the peri natal vitamins that I didn't you know, I skipped them a few days? Was that? That?
Was that?
The shampoo, the new shampoo that I used during my pregnancy? What did I do wrong that got us to this point? And then there was also another version of guilt that like in a spirituality, what am I guilty of that God or universe is punishing me for? And that was much harder there because I felt like I was a bad person. I am this bad person and I'm getting punished because of me being this bad person. So why why? What did I do wrong? I couldn't think of anything.
But then I was like feeling guilty and if I did something wrong, if I'm guilty of anything, why is she being punished for that? Why is she going through all this hardship for what reason? Having that profound autism is not easy? And why is that she has to go through it? And then the other thing was that I got into this state of anxiety. You know, growing up as a young adult, I was always believing that, Okay, you plan life well and you work hard, and you
get to whatever you want sooner or later. But now I was like, I planned it well. I really worked, you know, I really I did whatever I could to be a good mother during my pregnancy before my pregnancy, and I really really really worked hard, and I really really really felt prepared for that. Yeah, but then it didn't go as planned. So I lost my trust to everything in life. You know, I'm like, anything bad can happen to me right now, the sky can fall off
for no reason. So I was in this kind of like a very defensive, very like ready for anything to go bad mode, And that brought me anxiety.
We'll be back in a moment with a slight change of plans. About a year after Bennie's daughter received her diagnosis, Bennie settled into a new routine. In the morning, she dropped Saba off at a preschool for children with autism, and on the drive home, she'd stop by the beach to take a walk by herself and think things through. On this one morning, Bennie felt particularly reflective.
So I had all this time to just walk and have these inner conversations with me, thinking why me, why this, why her? What did I do? Started feeling pity for myself and for her, and then feel like I'm a victim.
And then I see this bird. I see, you know, you just see all these groups of birds, and then suddenly I can see this bird that has only one leg, and I notice that she is moving slower than the other birds, but still she's just picking up food from the ground, and still she's flying a little bit around, and she's part of this group of birds. And I didn't really notice the other birds treating her differently, like
she was part of this group. And she was still like, you know, making birdly noises and everything, and was like living her life despite her one leg missing. At that same moment, I was thinking, this bird didn't do anything wrong. Maybe there is no why me, Maybe that is not the question. Maybe I shouldn't be looking for any reason. This is part of life, this is part of nature. So from that moment, I just gave up asking all those questions of why me, why her? What did I
do wrong? What is the reason? All that matters is what we have right now and how to get the best out of it and just focus on the things that we have. Like I feel like if there's an earthquake right now and all of us die the moment, I'm dying I don't want to be thinking, oh my god, I spent all this time emphasizing on how miserable we are. I just want to be thinking at least I did whatever I could, and at least I enjoyed however much of it that I could, and I helped my loved ones enjoy it.
So how did this moment at the beach affect your mindset moving forward?
So that moment a very very very critical moment that I can remember and I can't pinpoint. But it has been a process.
Absolutely.
It has been a long process. And still it is a process. You know, I think that, okay, I could handle it better today than yesterday, this week than last week. It is a process. But then with that moment, and then maybe the next few weeks or months after that, that that pain went away. It was not painful anymore. I was not a victim anymore. My daughter was not a victim anymore, My family was not a victim anymore.
Did the shift change the way that you approached your day to day interactions with Saba and your family life overall?
Oh, definitely, definitely. I gradually started to live life again by changing my perspective, by changing my expectations I could enjoy life again, and I'm very grateful for that, very much so.
So, Benny. It's been over a decade since that day in the doctor's office when you received Sava's diagnosis. Sava is now fifteen years old, and I'm wondering what is life like for you now?
Life is very beautiful, life is good, and is really really really really hard. But then what makes it bearable is you know, Maya, For the longest time, I was trying for my family to be as close to a typical family as possible, and that was tiring, that was exhausting. The moment that I accepted that, guess what, we are not a typical family. We are not, then that exhaustion
went away. Because maybe letting go of trying to be typical and then instead just try to get to the best or to the happiest that is possible for you as a special need family is the answer. Maybe maybe that was the answer for me.
You mentioned that life is still very, very, very hard, and one I so appreciate your honesty and your candor, and I think that's that's such an important part of your story right right, that things can continue to be really really really hard, and you can still find beauty and joy. What are some of the current challenges that you're you're facing as a family.
One of the major challenges that we have right now is that now she is fifteen years old and she has the body of a mature woman. She's a little bit shorter than I am, and she's heavy, and things that were, you know, just controlling her emotions or controlling her impulses when she was little was much easier. I could just grab her and go, Like if she wanted to touch something that she was not supposed to, or if she wanted to just run towards something that she
was not supposed to, I could physically stop her. But then right now we don't have that, So helping her control her body and just stop herself when her body is doing something inappropriate is much more challenging than it was before. And still with frustration, tantrums are still there, making you know, screamings and stuff are still there, and we're working on them work in progress, and we do see progresses that be by the way, celebrate, but then there are still so many challenges.
I want to talk about those days where your feelings lie somewhere in the middle where you're not quite feeling joy, but you're also not feeling deep sadness or frustration or despair. Because I have to believe that on the days where you're simply feeling neutral towards things that you're not reacting as you might have in the past, that that also is a big win that should be celebrated.
That is true, Mayad. There are actually very many days that I feel neutral through things, very many days, but then I feel like not feeling frustrated is a big win. And those days because like these challenges. Like everybody in life, we all go through challenges, so they are like everyday challenges for us. And I feel like coming from a place that every moment of every day is torturous to a place that most moments of most days are neutral is huge. At least I think for me it has been huge.
What do you want people to know about your family that you think is so often misunderstood? What do you want to share?
Oh, one major thing, don't feel bad for us. We are a happy family. We may not be a typical family. We are not. We are far from a typical family, but we are a very happy family. So don't cry for us. It's okay if you want to cry with us at times, But that is one thing. Do not feel bad for us. We are a happy family. But sometimes I feel like we are living in a parallel universe, so we are not living in your universe, but we are as happy as anybody can be in your universe,
in our own universe. So I feel like And then the other thing is that for me personally, I feel like my level of happiness in day to day life would have been the same even if I didn't have especial need child and I had a typically growing child, because at this point, I feel like I don't emphasize on little problems as much. I don't sweat little things anymore. I'm just happy.
I can see that happiness in your face.
You know. I've come to the conclusion that more important than what happens in our lives is the way that we react to what happens. And at some point I decided to just react to it in a cheerful way. And then that was when that the doors to joy opened up. That was when that I'm like, okay, so who cares that she doesn't talk, Let's just get that little hug or that like very warm feeling of the little kiss on her cheek, and then be grateful for that.
And then let's just pause those moments, just let go of all those dreams of graduation and driver's license and grandchildren and all of that. Don't worry about those, And then let's just let go of thinking about how it could have been and just focus on what is and get the best out of what is, no matter how small or bigot is. So now I see the meaning, or I see the purpose of my life to just as a mother, If I can just help my daughter enjoy what life has to offer to her potential, I
have reached my goal. And in this process I've learned that life has so much to offer. You know, I'm not denying Graduations are really good. Are very big deal your teenager getting having their driver's license and going God, They're really big. They are real joys of life. But then who cares if she may not graduate as a typical child. Who cares if she may never drive? Who cares if she may never get married and have children? There is so many other things that life has to offer.
Like she learned to ride a bicycle when she was eleven years old. Now, she can ride her bicycle, and still she cannot wield the boy, So we cannot go on trails and stuff, but we can go to empty parking lots. And the joy that I see in her face doing that is enough for me. Yeah, I don't want anything else, even though I know what other fifteen year olds would be doing at that moment. That is very joyful, very typical. But this is us, yeah, and we better not grieve that and enjoy this.
He mentioned the bicycling. I wonder if you can share a little bit more on that front. How do you experience joy as a family.
So, again in not typical way. So we are good at restaurants, so we enjoy going to our favorite restaurants. We usually sit on booths because boots are much easier. She tends to rock, so single chairs she would be rocking too much. But if we sit in a booth and we have her favorite dinner, which happens to be hamburger and French fries, we are a family enjoying life together. And then also Samoe enjoys car rides are fun as
a family on weekdays. Is that when everybody comes back from work and she's done with her therapy and her school and everything. We just get in the car and we just take a forty five minute car ride and we'll listen to our favorite music. Dad and I sing along. She sometimes makes noises, We sometimes clap, and you know, just dance with the music and we enjoy.
Danny, it's not lost on me that your teenage daughter is in the car with the music, playing, dancing and making sounds. That is pretty damn close to that dream that you had for her when you imagined motherhood.
You're making me too up.
I'm sorry. I just it's amazing. It's like she is having that moment with you. It just looks a little different.
That is true. Yeah, that is definitely true. Wow. I never looked at it this way.
Yeah, amazing. Yes, Hey, thanks so much for listening. If you liked my conversation with Bannie, you may enjoy my conversation with First Responder Christy Warren. She's another guest who started out as a listener of the show. The episode is called a first Responder's Call for Help, and we'll link to it in the show notes. And next week
we've got our season finale. My friend Adam Grant stops by to talk about our hidden potential, the perils of perfectionism, and why we need to give soft skills more respect. I'll see you next week. A Slight Change of Plans is created, written, and executive produced by me Maya Shunker. The Slight Change family includes our showrunner Tyler Green, our senior editor Kate Parkinson Morgan, our producer Trisha Bovida, and our sound engineer Andrew Vestola. And thanks to Aria Nettles
for her help with this episode. Louis Scara wrote our delightful theme song and Ginger Smith helped arrange the vocals. A Slight Change of Plans is a production of Pushkin Industries, so big thanks to everyone there, and of course a very special thanks to Jimmy Lee. You can follow A Slight Change of Plans on Instagram at doctor Maya Shunker. See you next week.