Show Notes

 

Dr. Mariam Shapera is a family doctor, mother to three, one autistic and recently published first children’s book inspired by him. Advocating daily for her autistic son to allow him better accessibility and to increase awareness and acceptance of autism. Also she love learning from experts and other parents of kids with special needs.

 

Are you still in shock that you are a parent of a special needs child?
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My name is Chad Ratliffe. I am a single father of 5 kids 6 years of age (8-14) and 2 with special needs. 5 years ago, in a nasty divorce, my depression led me to drug addiction and hopelessness. Today, I share with others a life I never imagined possible.

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SUMMARY KEYWORDS

parent, autism, child, autistic kids, advocate, loves, autistic, learning, joe, aba, book, naked, kids, family, potty training, joseph, accommodations, days, speech, scripting

SPEAKERS

Chad Ratliffe, Mariam

 

Chad Ratliffe  00:00

What do you say to the parent who just got the diagnosis? Their world just got rocked? They're just depressed. They don't think they have what it takes to do this. And they don't want to do this, like, what do you say to them?

 

Mariam  00:11

It is hard, but it definitely does get easier. The first the beginning, I would say the first year was the hardest for us. But really, really educate yourself and learn to advocate for yourself. Yeah, no loss and trying and asking for something, you know, I would say it only gets better your child will improve a lot of the time I've seen see regression, especially in autistic kids. And then we see it's a stepwise kind of pattern. I've noticed more. So you need to see some progression, even on the potty training when he was potty trained, he regressed a little bit. But then you see that leap again. And you think, wow, why? How come I did not believe at that time? You know, how could I not believe and of course, taking care of yourself as a parent too. It's hard to find the time especially with a special needs child.

 

00:54

Welcome to the daily naked parent podcast brought to you by Rocco blue. The first ever brand focused on supporting parents with special needs children. Naked parent nation is a group of parents with special needs children, who are willing to give honorable, stripped it all down and take a look at ourselves, our parenting, our family and our plans create a life beyond our wildest dreams.

 

Chad Ratliffe  01:27

On today's show, we'll be discussing how to advocate for your child's Hello naked parent nation and welcome to today's episode of The Naked parent podcast. My name is Chad ratliffe and I'm your host. Before I introduce you to our guests today, let me start by sharing a message from naked parent nation. Naked parent nation is a worldwide community of parents and professionals raising children with all kinds of needs. We come together to share Naked Truth support our fellow parents and inspire the inner growth that each of us needs to build the life and family of our dreams. For the parents that are struggling, we want you to know that we will love you until you can love yourself. For your children we pray and sent power from our collective group. Naked parenting is the process of moving from where you are to where you want to be. Naked parenting understands that the mind is responsible for all of our problems. As you shed the layers of your old programming and beliefs. You will return to the deepest truths of your own being what you've always done and receive the life you're living or create the vision you want for your family. Combine that with an elevated emotion, support from our community, and you can live the life of your dreams and beyond. We have the power to create any kind of life we want for ourselves and our families.

 

 We do this by living in the naked present moment, one day at a time. If this is your first time connecting with us, I hope you feel the love that's here for you. Together we walk different paths side by side. On today's show, we have Maryam Shapira, who is a family doctor mother of three, one who's autistic. We recently published her first children's book, which was inspired by her son. She's advocating on a daily basis for her son to allow him better accessibility and to increase awareness and acceptance of autism. She loves learning from experts and other parents of kids with special needs, Mary and welcome to the show.

 

Mariam  03:38

Thank you, Chad. Thank you for having me.

 

Chad Ratliffe  03:40

Yeah, we're excited to have you here. You're living in San Diego, you're a family doctor, mother of three. Can you tell us a little bit about paint the picture a little bit brighter for us? What does family look like for the Shapiro's?

 

Mariam  03:54

So yes, I'm a part time family doctor. I work per diem. So that allows some flexibility as a mother of three, especially when you have a child with some special needs. So yes, my oldest is just turned nine and my daughter and then I have Joe Joseph, who's my middle child, he's autistic, and he's six, he'll be seven soon. And then I have my youngest who just turned five. So I try to be as much as hands on as possible with my children, you know, time flies and as they grow older, I feel like it's they're going fat, you know, time is going quicker. So yeah, so that's why I work part time and also recognizing the needs of my autistic child I feel I have to spend time you know, advocating for him and being there with him, whether advocating directly, you know, being with him or indirectly in other ways. So

 

Chad Ratliffe  04:44

when did the autism part of the journey begin? What was the first time

 

Mariam  04:50

you know, since actually I would have to say I know this sounds so like, like from a story or a fairy tale, but since he was born, he was my second one. So I kind of had to be Have an idea. But since he was born, I noticed something different about job. very calm, very quiet, very sweet boy, he actually let me do my errands and things around the house, which was great, didn't interact much with toys at that time. And by the time he was one, he didn't have many words, like one words, maybe two. And then between the age of one and two was a bit more obvious for us. Both me and my husband are doctors. He's a internist. I'm a family doctor. But despite that, we don't get much teaching on autism. I graduated back in 2007. And I had, I think, one lecture on autism, very kind of negative deficit based view of autism, I'd have to say, and not very characteristic of what my son had. But we did notice he was delayed in speech. And we were suspecting maybe he's autistic. He likes to play by himself. But he was also with a sister move parallel play with her. She was two years older than him. And then by two, we have went for the wellchild for his physical and the pediatrician recommended, I told her my concerns, and she also saw how he interacted and played with some toys. And she recommended a developmental assessment. And at that time, we also asked for speech therapy referral. It was about three years and two months when he started evaluation for speech therapy.

 

And then we had our regional center come in, and they did the assessment for Joe, when he was two and a half at our house. It wasn't the best experience. Because you know, you have two strangers coming in for two hours and you're home and expecting Joseph to do this, this this as a checklist. Then they come to you at the end and say he can't do this. He's not meeting this milestone, this there's nothing really positive coming out of it. There's a lot of stuff I've seen him do. And okay, that's fine. Like, okay, fine. And then last one, we started the ABA therapy at that time to recommend it as a treatment for autism, as well, the way they put it at that time. Little designer later was like I learned learn more as from then on, you know, I've come a long way since then. But anyway, yeah. So that's when we started. He was two and a half on he started speech therapy, and ABA therapy three times a week.

 

Chad Ratliffe  07:04

So the third child is they're close in Ah ha, the Joe is

 

Mariam  07:10

two years apart, he told all of them. Yeah, so he's definitely like the middle, you know,

 

Chad Ratliffe  07:13

I say, what was that like for you seeing something look different? And then getting coming to understand what you were actually working with? How was that for you personally,

 

Mariam  07:25

when I was in denial, like there were some days when I thought we can get through this. Maybe next time, like maybe in another week, he'll meet a milestone and it's done with you know, and then other days were bad. And we were crying, especially myself, because it's a lifelong diagnosis. It's a lifelong disability, I think during COVID is when it started to come together, because he was spending time at home. And then we did our own thing more. But yeah, up until COVID, it was sort of, we didn't know where we were headed, especially also with ABA. speech was going good. He was going once a week. And he was progressing at his own pace. And I was still comparing him to those milestones that you see when you go to your pediatric clinic. You know, which you should not do that. But those are not made for autistic kids when you're divergent kids. So it was difficult, but I'd say around COVID is when things sort of turned around for us more.

 

Chad Ratliffe  08:18

Yeah, so it was what helped it turn.

 

Mariam  08:22

So in during COVID, I will go through some potty training issues. And we had some difficulty with that with Joe, he was three to four that time. And we know that there's delays with potty training and these children, but I also knew he was capable of doing it. I just didn't know how and we tried several ways. And ABA weren't able to we won't be doing zoom at that time. And it wasn't effective. So we stopped it altogether during COVID. And I did some research and I saw that you can actually bring in a private party consultant into your home. And even though it was wasn't exactly at the height of the pandemic was like six months later. So we did bring someone in. And she stayed for three days. And we had been potty trained basically. So and I continued to work with him after that. And it was during COVID as well. So it was you know, had some time wasn't working.

 

 So that's one thing we did, I worked with him with potty training. The other thing is he didn't go he didn't he only had one hour of online learning. At that time. He wasn't a full time education. He was still in preschool. And so I just followed his lead. It just seems so natural with playing. And I had him sit at the table, maybe just for a few minutes, I gave him a break. So I knew he needed the sensory break. So I gave that to him. And then a few minutes later, come back. Let's do this now. So I kind of followed his lead and saw where he was at. I also saw so much interaction between him and his siblings, like the relationship was so strong. So just little things like that. We took him out to parks and things like that, you know, as much as we can to create those experiences as things started opening up. So just that it's kind of seems weird, but it actually helped with being at home for that one year. Time. Yeah.

 

Chad Ratliffe  09:55

Awesome. For a parent that thinks that their child could learn to be potty trained. Do you You recommend the intensive potty training expert does that? Do you feel like that was worthwhile expense?

 

Mariam  10:07

It was for us, I had my older daughter who had her own needs, especially academically at that time, she was in TK like in kindergarten. And then I had my youngest as well, he was just on to. And I just felt I couldn't do it. I mean, I tried, but it's just it didn't work with him. And based she was trained in potty training autistic kids, not neurotypical children. So she had the experience, there's no such thing as getting a certificate and potty training autistic kids, but she had the experience of that. She was a psychologist. So she had a PhD. And yeah, she gave me so much advice, and this and that. And we still keep in touch of other things. We're helping with advocating and things like that. So I don't regret that at all, even though it was expensive.

 

Chad Ratliffe  10:52

How did Dad handle learning about and dealing with the diagnosis?

 

Mariam  10:59

I think he handled it better than I did. I was probably I was probably the one more like stress, stressing about it and reading about it more. And he was kind of more reassuring me, it'll be fine. You know, if you are doing well, he'll do well, too, which is so true. Because I know when I have good days, he has good days, too. It's a whole toll regulation thing, I believe, you know. So I think he handled it well. I am more. I do spend more time with Joe than my husband does. He's more at work his full time. So he's busy at work, even on weekends. So I do spend more time with him. But he loves his father very much. They have that music connection with each other because my husband plays music, and he's learning to play the violin too. And he teaches my daughter the keyboard. So Joe is very musical, as many autistic kids are. And he's always drawn towards that. And so yeah.

 

Chad Ratliffe  11:51

So how does Joe's autism make him unique?

 

Mariam  11:55

Ah, so much. It's so like, there's so many white things about him. The musical actually continuing about the musical part. He's very musical. And it's just in all different ways. It's beautiful. When he hums, its pitch, he has perfect pitch. And even see people like strangers, oh, he has a beautiful voice. But I think what they mean is he has perfect pitch. So he just wants to listen to him all day. He has his own, like pattern recognition with music lovers he loves to have my daughter is an app for learning music on her iPad. And so he loves to look at the music notes on there, and try to play while he's looking at those music. And he's going by other ways He's unique. He loves letters and numbers. And he's hyperlexia, he learned to read by himself when he was four. And that took us all by surprise. Again, that's another thing that happened during COVID. So we exposed them to lots of books, and he always loved numbers and ABCs and all that. Um, so he loves books and reading and those things. And he's so empathetic with his siblings in his own way. But you can tell it's empathy. It's just his own way. So, yes, there's a few things

 

Chad Ratliffe  13:01

we talked about advocating and how important that is. What can we do to create a better world for our kids, these kids with autism? What do we need to do to make a place for them?

 

Mariam  13:15

Yeah, there's so much I think, from different parts. So I think it's like there's direct aspects of it. So you being with your child, that's fine. But I think with their school, it's important. I'm going to be involved in teacher parent meetings, starting this month, I'm not sure where they're going to evolve yet. But they happen every month. So that'll be exciting to try and see to improve accommodations and supports for autistic kids and other kids like Joseph. That's one way one way you can advocate of course, for your own child keeping in constant touch with the teacher asking for accommodations, things like that. If you're not happy, you can always request an IEP meeting anytime it doesn't have to you don't have to wait for the annual IEP meeting. If you feel uncomfortable to advocate yourself, bring in an advocate, bring in any therapists that are involved in Joseph's like in my son's care

 

, I involved SLP I bring in his CBA from his ABA company. And I also had another advocate come into it. So I think in terms of like the community being involved in the school and your child's school, it's so important to see how their classroom is what has improved accommodations. Having for example, a sensory gym would be great for these kids. In a school for the wider community online is very important. So being on social media, educating other parents and also educating parents that have that kids, our kids are not autistic. You know, we go out in public sometimes and I get stares because Joseph is scripting loudly or because he's doing some kind of stemming movement. I think before would have upset me maybe I would have cried but now I'm prepared to say something you know, if a woman looks at me and says Please tell him to be quiet if it's in the library or something like that, you know, just educating in a nice way educating others who are don't have an autistic person Then or neurodivergent individuals in their family so that they can educate their kids. So you can reduce bullying, especially as they get older. I'm worried about bullying for my son. He's so young, that when he gets older, you know,

 

Chad Ratliffe  15:13

course, what is scripting? Can you explain what scripting is

 

Mariam  15:17

scripting is when they repeat back what they hear, for example, from a TV show. So Joseph might be outside, he might look at the sun, and then he might start scripting about the sun. So he will start repeating back something he heard, and like an audiobook or a read to me book about the stars and the sun. And they'll sit there and he'll start scripting about that. So it's worth communicating, because he's talking about the sun. But he will repeat back what he's heard. Now, it's not always communicative most of the time it is, but sometimes he'll just do it to make himself you know, to regulate himself, or I'll just make feels good.

 

Chad Ratliffe  15:55

Is there anything that you believe to be true that most parents disagree with? And if nothing comes to mind, no worries, I just sometimes there's, people have a different take on certain things, you know,

 

Mariam  16:07

the scripting I was telling you about actually, it's like, scripting, but it's called echolalia. When they repeat back shorter, like phrases, a lot of you may say, just ignore that. But we have to acknowledge that because that's actually communicative to this whole thing. I'm not sure if you've heard of it, but Gosh, darn language processing, which I really advocate for, for Joseph, most autistic kids are Gestalt language processes, which is another way less common way of learning language. So I would say that's the most important thing if your autistic child is speech delayed, make sure they are being taught language the right way by an LA certified or informed SLP speech therapist, because we have an issue with that with Joe to. And well, that's why we pay privately now for our speech therapists versus going with our insurance, because we want him to be taught the right way.

 

And he has progressed so well. Yeah, ABA should not really emphasize the controversial, but ABA should not be teaching speech. They are not speech therapists, they don't get training and speech. I understand many of them, we still have ABA, I understand many of them do collaborate with SLPs. And that's great. But they should be focused more on the behavior. Why is the behavior happening? And rather than focusing on teaching speech, and teaching just requests just to get by? It's not that it should not be like that. Yeah.

 

Chad Ratliffe  17:26

Awesome. We do something called the lightning round, where you give kind of first thing that comes to your mind like one word to one sentence answers just to get more of your opinion and experience. Are you up for trying it? Out? We'll try. What's the best advice you have received?

 

Mariam  17:44

Focus on progress, not perfection?

 

Chad Ratliffe  17:47

What kind of course or retreat or training would you like to see for parents raising special needs children

 

Mariam  17:54

focus on speech development, as I was mentioning language development, because we parents spend the most time with kids?

 

Chad Ratliffe  18:00

Do you have a top resource or recommendation to share with other parents?

 

Mariam  18:04

Yes, the meaningful speech course. And also a book, I have a book by Mr. Blank.

 

Chad Ratliffe  18:10

What's the next thing on your list that you want to add for your individual well being

 

Mariam  18:15

exercise, walking outside the pressure?

 

Chad Ratliffe  18:18

What's one thing you think would improve your life if you did it or had it?

 

Mariam  18:22

I think just again, taking care of myself more,

 

Chad Ratliffe  18:24

do you have a favorite product that you use for yourself or your child or your family that you just love and couldn't live without?

 

Mariam  18:31

Right now for my child is peanut ball, it seems very sensory boy and he loves his peanut ball also as to toys, or as athletes.

 

Chad Ratliffe  18:40

So tell us about this book. You're an author, published author.

 

Mariam  18:45

Yes. So what happened is I've always wanted to write but it stopped when I went into medical school, of course, so during COVID actually was pregnant with baby number four, and I had a stillbirth. And at that time, this was in 2020. And I wrote, I just had the inspiration, actually inspired by Joe. Because of his love for music and space. The idea came to my mind, and I wrote the story about a boy who lost his musical notes. I didn't actually want to publish or anything like that, we'll go through with it. And then my husband encouraged me, the beginning of 2021. And the book was published in summer of 2021. So it's not an autism story. It is inspired by an autistic my my son is autistic. But I do have a second book coming out. It's still on illustrations. And it's basically looking at the positive aspects of autism because that's what we all need as parents. It's looking at its title, Joe, special gifts, and I'm hoping to get it released around autism awareness month, in April next year.

 

Chad Ratliffe  19:40

That's awesome. If you think of it, can you send me the names of the books so we can put it in the show notes so people can find it or know where to look for it? Yes. Okay. You seem like a wealth of knowledge. I think you advocating for autism is I think you're a huge player in that space your you sound like a great person to have doing that. We're grateful to have your your kids are grateful to have such a cool mom that is so engaged. Thank you. What do you say to the parent who just got the diagnosis? Their world just got rocked, and they're just depressed. They don't think they have what it takes to do this. And they don't want to do this, like what do you say to them?

 

Mariam  20:25

It is hard, but it definitely does get easier. The first the beginning, I would say the first year is the hardest was the hardest for us. But really, really educate yourself and learn to advocate for yourself, you have no loss and trying and asking for something, you know, all the time, it's a human rights for our children to get to ask for accommodations and those sensory breaks. And I would say it's only gets it gets better the child your child will improve a lot of the time I've seen see regression, especially in autistic kids. And then we see it's a stepwise kind of pattern. I've noticed more. So this system progression even though the potty training, when he was potty trained, he regressed a little bit. But then you see that leap again. And you think, wow, why? How come? I did not believe at that time? You know, how did I not leave. And of course taking care of yourself as a parent too. It's hard to find the time especially with a special needs child. But you have to have the time to for yourself. Yeah, somehow have to find

 

Chad Ratliffe  21:20

I appreciate that. I appreciate you taking the time to be with us and share your story and love to catch up when your new book comes out and introduce it to our audience and just kind of hear how things are going. That's alright with you.

 

Mariam  21:34

Thank you for having me, Chad. And thank you for doing this podcast. That's That's great. That's so amazing what you do.

 

Chad Ratliffe  21:39

Thanks so much. Wish you and your family a great rest of the day. And until next time. Okay. Thank you so much. Thank you. Bye, Marian. Bye.