126. Coping With Neurodiverse Children in Marriage

  Welcome to the Connected For Real podcast. I'm Rebbetzin Bat-Chen Grossman, a marriage coach for women in business. And my mission is to bring God's presence into your life, into your marriage and into your business. Let's get started. 

 And we are live. Welcome everyone to the connected for real podcast. I'm Rebbetzin Bat-Chen of Grossman. And today we have a really awesome topic and a really awesome guest. So today we are talking to Jackie and we're talking about parenting and marriage and we're going to get really into it. So first thing we need to do is Jackie introduce yourself. 

Thank you so much for having me. I'm totally honored and excited to be here. So my name is Jackie Edry,  and I'm an author, and educator, and writer all around. My book, which I released three years ago, is called Moving Forward, Reflections on Autism, Neurodiversity, Brain Surgery, and Faith. And I have a blog as well, and a lecture.

Teaching all about everything neurodiversity, parenting, education, and my aim and my shlichut is to help people in the world. I am the parent of a bunch of neurodivergent kids. My oldest son is Autistic anyone who doesn't know what neurodivergent or neuro distinct means is autism dyslexia, DHD LAN syndrome, and all kinds of things like that, which means neurologically different humans.

Although we are all neurologically different, some are  out of the range, what's considered neurotypical. So that's a little bit of the terminology, and so I.  I am the parent of neurodivergent kids and I am also, I've been working with them for years and then 11 years ago I had brain surgery. I had a massive tumor on my brain stem, woke up with all my senses scrambled, went through a very long difficult recovery and still have many things that I deal with every day,  but it gave me a lot of insights as to what neurodivergent people are live with and deal with it and the challenges they have, especially along the sensory perception area. 

So I wrote a book about it to help others. And that's been my journey for the last number of years. And I love linking up with people and. Talking about this stuff.  I love it. I love it. So we're not just talking about the you know, typical issues that come up between Parenting and marriage and I just want to bring this up You know when you have a baby a lot of people will say there's a baby between us and that's exactly how you describe Parenting right?

So there's like your marriage is now sort of  evolved and Into two people having to have opinions, make decisions and deal with all the different challenges and obstacles and, you know, wonderful things that kids bring with them. And so it really is about the parenting, right? You and the child. And it's also about you and your partner dealing with this child and how to really address all that stuff.

So I think that it's, you know, just on that level, we're already talking about a lot. And then to add to that, when the child has anything health related disability, you know,  out of the spectrum of.  Typical or whatever that adds so much stress on the marriage. And that's why I wanted to bring this conversation here because it is, it's really touching most homes and most marriages have to deal with something.

And it's, it's a real strain.  Absolutely. So let's get into it. What? What are the first steps? I think that, you know, my sister is an audiologist and she's a parenting coach for parents of children with hearing loss  or who are deaf. And one of the conversations that we have a lot is how.

Do you deal with the parents  having to find out, Oh, my kid can't hear.  I have a special situation here. I need to deal with this, you know? And then all of the mind drama that comes up is like, it's not supposed to be this way. And I don't know how to deal with this. And what do I do first? And you know, the denial and, and one parent being on a different wavelength than the other, like, come on, let's just get into it.

Let's just take action. It's like, Oh, too much for me. Right. So so let's talk about that first, you know, the first stages.  Well, first stages begin before diagnosis. The first stages begin when oftentimes one parent, sometimes both,  when, one of the parents notices something seems a little bit off.

And sometimes it's a bit later if it's the first child, because you're not, if you haven't worked with kids or anything, then, then they, it takes a while to wake up and realize that something is going on that It's different from your other, you know, peers who are not on par with the typical child developmental stages.

But then you start seeing something's going on. I'm like, okay, trying to present that sometimes there's conflict where one partner says, No, there's nothing going on and you're just hysterical and the and the other partner  says no, no, no. And starts running. And then you go through the process  of recognition and diagnosis.

And sometimes I guess the thing is that most parents, when they have kids, they sort of have a dream what they think is going to be the future of that child.  And, you know, it's going to be, I don't know, whatever it may be the parent or parental dream,  when you're faced with a child that is,  You realize you're on a completely different path than, than, than we anticipated. 

Now, sometimes it's something that's somewhat easy to deal with where you think, okay, you know, all right, some people will deal, like I said, in the instance of deaf, okay, they'll get a cochlear implant, they'll lose a speech therapy, and it will be okay, and they'll manage in the world. And that is something that's, whether it may be  autism, or illness,  or any other, whatever it may be where it looks like the challenge is going to take much longer, and you don't know what the outcome is going to be.

And that often affects people very, very differently.  Sometimes a parent will feel disappointed, distressed, depressed, fear for that child's future. Are they, and I think the biggest fear is, are they going to be happy?  And the other big, big fear is  who's going to take care of them if I can't, or I'm no longer here.

And those are the fears that, that tend to driving force between the behavior of a lot of times with the parents. And they do put a strain on the marriage as well, because sometimes parents say, more relaxed. Sometimes  it's one very goes approach it cognitively, which is let's go do research, spend all day on Google running and treatments and whatever it may be.

And the other parent is like, no, everything's okay. We'll leave alone. And when you're, you know,  it causes conflict. So  it's really important  for parents. It's what I, what I have found has been successful over my years. My, my oldest son is 26. So I've been at this for a while. Is to  first of all, give each other permission to be different as parents, to go through whatever you need to go through where to discuss the fears.

I think my husband and I what we did was most helpful. I think it's almost every single evening, no matter what happened before we would go to bed, we would kind of have like a mini, mini staff meeting, you know, what happened today?  What did we do today? What was good? What was bad? What should we improve?

What was helpful? Had what, what did we stress out on that we shouldn't, but have a mini stem. What are the plans for tomorrow? What our next goal, short term, long term, but that open line of communication and allowing each other permission to process the information differently. And we approached things very differently for the first few years, because I knew because I had a history and background and even wrote a thesis about autism before my son was diagnosed as I, I went right into the action mode. 

I knew what I was in for the minute he did a hearing test and we realized he wasn't deaf because that, that, I said either he's got a hearing loss or he's autistic. I knew. So he was, before he was three, I took him for a Barrett test. They said everything's fine. I said, okay, he's autistic.

And I was already, I took him, we took him to the stage for a few years, did all kinds of  things for treatment. And he had, we still had the processing stuff. He, he didn't know what he was up against. He didn't know anything about autism.  So it was very different process. You have to allow for that and, and help each other through that situation  because otherwise many marriages go through a terrible time in the beginning after a kid is diagnosed.

Because like I said, the two major things parents are afraid of is the parent. The kids are never gonna be  happy and what's gonna happen then. And,  and those are huge, huge fears that are very difficult to cope with. 

So that's my initial suggestion. I think one of the biggest issues is that parents feel like they have to choose between the marriage or the child. Because if the, if the marriage isn't supporting this child's, You know moving forward and getting the help he needs and blah blah blah Then he's in the way and we need to get rid of him, you know or her but for the most part I find this You know more in in mothers, you know, my husband makes fun of the simpsons They have this magazine called the fretful mother magazine and it's all the things that could go wrong, you know So they're making fun of of like how mothers are always on the lookout for what's wrong.

What's going on? What's you know? But there is, you know, there's a natural tendency to just want to protect your kid and make sure that they get the help they need. And if you see that somebody is in the way and is not cooperating and is having a hard time managing and processing and, you know, taking longer than it should take, quote unquote, then.

You have this feeling that you have to choose and I want to just put this out there and make it really clear that you never ever have to choose, but if anything, you're investing in your marriage and making sure that. You're both able to work together with this challenge is going to serve your child better than choosing the child over the spouse and separating.

So this is something that I really want. I'm like super clear about, because I feel like it's, it's just too trendy. to drop the husband, you know, like, oh, it's not working out. Depending on how challenging the child is, because if a child has very challenging behaviors or demands, a lot of times

I think there's a pretty high percentage of men that don't want to deal with it.  But, again, if you're working together from the beginning, I don't know if they don't have the emotional capacity.  I don't know if they don't want to, or they don't know how. They don't have the skills,  they don't, right? 

Can you, can you imagine  going through this, then feeling helpless, and then being thrown out because you're helpless, and you don't know how to figure this out on your own. Like, it's terrible. Being thrown out is absolutely, yeah, I'm not talking about thrown out, I'm talking about the choice  to leave.

But it is absolutely  not a correct choice of words that I use of don't want to that they don't have the capacity at the time But at times also people need to take a break and then they come back and they say let's you know work together But I think if you keep the lines of communication  and the permission all along then you don't get to that point, you know.  I want to get practical here again, just for one second. 

If you do find yourself in a position where you are going to be,  dealing with something this gigantic for a long period of time, it's not like a one time thing or something. Get help, get support, get yourself  real, real help. You know, have a team of people you have. You can lean on and turn to and say I don't know how to deal with this This is what's going to really keep you from falling into that Helplessness, I I'll take it even further and say you can't do it on your own  If you have  children with challenges, you can't do it on your own Not everybody needs to go to a therapist per se, but you must  must have a community whether it be family or friends or a community   whether it's your synagogue or whatever your community may be, but to find a group of supportive people who could help you.

Also timeshare and also know that you, you need to take the time as a couple to be with each other.  Another thing that happens a lot of times when you have a child that needs intensive care  is that one of the parents winds up spending lots and lots of time with that child and cannot work in a regular manner.

And, and what happens is the expenses tend to go up because there's all these treatments and they're not covered properly by insurance. And one of the parents is not working in the society.  Both parents have to work in most cases. And so on top of all the other stress that oftentimes is serious financial issues.

And that adds a lot more stress to the whole the whole situation and, and I think that  it really it's a matter of readjusting priorities where, where you need to sit together and, and decide,  first of all, you can only do the best that you can and whatever it may be, you won't always be able to give your kid everything that they need and you won't always be able to have everything that you need. 

And it's always a system of checks and balances to try and figure out how to help each other and help your children. And keep the whole thing somewhat together and balanced, even though you have the challenges you have. And if one parent wants to do everything 100 percent for that child, and not enough for themselves, the balance is going to be off, and the other way around.

So it's that readjusting all the time. Hence the end of the day, 12 o'clock at night, exhausted,  how are you? You know, and that really helps get through that period. and the friends and family who are helping.  And the other thing is, and then this really  happens a lot is that you're here. You said a friend and community changes because not everybody's accepting. A lot of people don't know how to react when a family is that sort of challenge.  So sometimes you lose friends or family members that are critical or things like that.

You have to,  readjust also your set of friends and your social standing and situation, which, which is also stress on the marriage.  And then you find yourself with a group of people that are supportive, and that's what you need really, because if the people that are around you that are not supportive maybe weren't the kind of friendships you thought you had beforehand.

But everything changes. There's, I don't think there's a part of your life that remains untouched when you're presented with such a challenge. And there's always this readjusting.  Right.  Yep. Yeah. So let's talk about neurodiversity for a second. All the labels, all of the things, sometimes it feels like  it's more constraining than freeing. 

You know, it's like on one hand, you want to know what's going on, but on the other hand, there's, you know, it's just too trendy to be something and to have something and to find almost like an excuse for why, oh, I can't, or, oh, whatever. I wouldn't put it that way.

That's, that's not my take on it. Labels. I personally,  Not everybody agrees with what I have to say regarding this labels. I don't find helpful for me. Okay. What I, I find, and there are a lot of people who agree with me on this. There's this two different models. Like there's a medical model, okay.

Which is looks what's wrong with you. Okay. And, and diagnosis and  that's medical.  Then there's sort of a social model that that's more of. Oh, this person has something going on. What supports do they need and different, not lesser. That's, that's a neurodivergent in neurodiversity. Okay. And, and then neurodivergence that those are the models that they tend to use. 

So , I'm definitely not a medical model person at all.  You do need to have diagnoses because it allows you to get services.  Right. And funding and support and, and everything. So it's very important to, to have the diagnosis.  But that being said, that diagnosis doesn't define the person. And actually in most cases I find it doesn't even tell you anything.

Because if I take 10 autistic people and put them in the room,  especially now that the spectrum has been widened a lot.  I, I will have no idea why they all have the same diagnosis.  It doesn't tell me anything about it. It's like saying,  I don't know. I bought a car. And then like, and, and then the person says, okay, what car?

Do you have a Jeep? Do you have a a sports car? Do you have the, don't know, don't know anything about it. The same kind of thing. I mean, lab deal. Yeah. It's not a human, it's not, it's not car. But if you say a person diagnosed with autism or autistic,  what does that mean?  My son has serious communication issues, serious sensory issues.

He's very friendly, but he doesn't have a lot of language. It needs intensive support in many, many areas. And there's another person that is not sociable and has doesn't recognize let's say fate facial interaction, but, but as super super genius knows language, very high language abilities, you know, and,  and they have the same diagnosis

so that isn't really helpful. What's helpful is to look at the person.  But back to the excuse a person's having a challenge is a person is having a challenge. Therefore, there's no excuse. A person with ADHD is going to have problems focusing and getting organized, as a general rule. 

The ADHD is an excuse for that. It's more of a definition of it. Okay, it's causing these issues. The question is, what do you do once you have that? diagnosis or understanding what supports you need and then you can work on it and improve the situation person doesn't have to give themselves necessarily a break and say, well, it's because of this that I don't do anything. 

 People can always improve themselves and their quality of life. by working on it. But the challenges are absolutely very real challenges and  it just reminds me of the teachers often say about kids that are working a million times harder than any other kid and the teacher doesn't see what's going on inside their brain and doesn't understand the challenge, sees after five minutes of fidgeting and not paying attention and everything, and they say, well, they're very smart and they're not getting good grades, they're not trying hard enough, they're lazy. 

They're making excuses. They're looking at them in a negative light. And, and, and I think that's not fair,  right? No. So I agree with you when I say,  when I say excuses, I'm not mean. I don't mean that it's not real. Uhhuh , I mean that it gives you permission to not try, you know?  Sometimes or some pe times, a person doesn't have the emotional energy to try. 

But you know, we all have our days that  we can really work hard and try hard and we all have our days that we just can't move ourselves, I think, but  I think  most people, if they're an emotionally supportive environment, and therefore they don't give up, I think most people do the best they can whenever, you know, all the time, I think, the best they can, some days it's great and some days it's, it's less functional in the sense,  but I think most people do the best they can if they're, if they're being supported.

And if they're not, I think it causes frustration or  they give up and, and then, and then it causes, you know, emotional distress and then they can do far less and then they can  kind of go down that path. But, but I do think in a supportive environment, and I don't think there's any such thing either as a, as a lazy kid or a lazy person.

Everyone wants to succeed. Everyone wants to feel good. Sometimes it's just the feedback they get from their environment  it makes them feel that it's not even worth trying.  Right. Sometimes it's through the parent, and this happens a lot of times with parents, with the diagnosed kids, is the parents start to see the diagnosis before the child.

And that's a, one thing I really want to give a heads up to not do.  Your child's diagnosis is not, or your diagnosis, is not what defines you.  It's part of you. You're part of that child. You are, it's an entire human being, a holistic individual, and it's not the defining thing. So it's, the autism is not before the child, rather it's the child and the autism is part of them.

And it's not going to go away,  but it's not necessarily bad.  It's not, it's, it's different. It's challenging. And certainly I think a lot of times before the person acquires skills and what they need, it's, it's much more challenging as time goes on. Things are, are oftentimes get easier if the person is given the right supports.

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 Yeah, I totally, I totally agree. I think that realizing that this is the toolbox you got, and some of your tools are different than other people's tools. And you're going to have to just learn how to use the things you got. But it could be a significant advantage as well.

It's not, all this stuff is not necessarily negative. , it can be a serious advantage.  Exactly.  You know, I, I love that Rabbi David Aaron speaks about each person is given a toolbox and in their toolbox, there's the tools that they need in order to do their job in this world, right?

And you're sitting around going, why did he get the good tools? And I got all this, you know, weird stuff, right? And it's like, because you get to be a specialist in this thing and you're gonna need these tools, right? And I wanted to just, you know, give like a heads up. If a child has a disability or a neuro diversity or something, it doesn't mean that their tools are broken.

No, you don't open a box and say, Oh, it's broken. Okay. I guess it's useless. No, there's just different tools and the different tools are their superpower. I know, I know somebody who's extremely sensitive, right. And it's like aware of what people are.  Thinking when when they give her like our eye roll or like a weird smile or something.

It's like, ah, You know, she's disappointed at herself for making them feel bad or whatever and it's like why are you so sensitive? But that sensitivity is her superpower Right, and so instead of trying to turn it off and you know disconnect from it. She wants to lean into it So learn to use it. That's all and it's so beautiful absolutely, the the beauty I think the problem, and this happens a lot, and this also puts a lot of stress on the marriage.

I'd say the things that were most difficult for us over the years,  raising our kids were  dealing with the educational system who tends to see them as being screwed up or lazy, or, especially with the dissonance where like most my kids have high cognitive abilities but they couldn't read.

They had Irlen syndrome, which By the way, I have these ear lens spectra filters. These, these are colored filters and it's not well known, which is why I'm talking about it right now. The kids often get misdiagnosis with ADHD and dyslexia because their light brain or not. Processing light properly and yearling spectrophictors  can completely change the way they feel and function and,  and perform in school as well.

And so like my kids were misdiagnosed with ADHD and dyslexia, two of them, and they had colored lenses and everything totally changed. But, but during the years before we had these colored lenses the teachers always thought the kids were lazy and then they come home with miserable report cards and they'd feel lousy about themselves.

And then the parents, you know, fortunately for our kids, we understood that it was a problem of the educational system and we had lots and lots of fights with them over the years. We didn't believe that they were what they were telling us about our kids. But many parents don't have the experience that we had.

We've both come from education. We both understand our diversity. And we realized the system wasn't giving the supports they need, but, but many, many parents will look at the kid and get angry with the kid and say, or, you know, they're a failure or the kids feel they're a failure. And that's, that's also another area where you need to sort of think about. 

realize how hard your kids are working and,  and that the system is failing them and that they are not a failure, and  by strengthening your children to understand that and giving them lots of tools to help them. Whether it be, like I said, ear and filters and hearing devices and understanding, understanding analyzing what their sensory issues are and trying to give them the tools they need to, to succeed and make their lives easier and not go down that medical route of the teacher says the child is sad and this is messed up and the doctor's trying to get them ritalin from second grade.

Trust your instincts as parents, trust each other as parents and don't believe all that stuff, all these huge. Industries that are trying to shape the future of your child. And I do have to say that  a couple of my kids now  are big. They are, they're out of the educational system. The minute they left the educational system, they started to bloom  because outside of the educational system, the world doesn't care if it takes you longer to do something, or if you use assistive technology, or if you, or you, you know, whatever it may be, you can use, just get the job done and do it well.

And the intensity of Creativity that they have especially now when there's so much assistive technology, and they pay attention to every detail of what's going on, like you said, their attention issues have become significantly advantageous to them. Whereas in school, they were punished for it. Now, one in the army and one in journalism, and they need those skills. 

Right.  Oh, I love it that you said, your kid is not a failure. The system is failing them. You know, such a crazy mindset shift, like mind blown. It is so important to understand that, you know, and one of the frustrations is I know someone who is in high school and she's just, you know, waiting to get out because she knows as soon as she's out of high school, she's free to be human, you know?

And right now she feels trapped because first of all, because she's choosing not to take medication, then they think, well, then it's your fault, not ours. We don't have to assist you with anything. So it's almost like they're punishing her for choosing to, lean into her own life. I had that conversation about five times with five different kids.

No, seriously. That's what they say, your child is not getting treatment when, you know, because you're not willing to medicate them. And then I found Irlen it turns out they had Irlen, and also they had auditory processing stuff. These things are, the problem with all neurological stuff is that it's not measurable in numbers. 

The medical system and the educational system are only interested in things you can measure, okay? So if you can't measure it, it doesn't exist. So they don't look if you can hear beeps on a hearing test It doesn't mean you understand what they're saying for what's going on. It doesn't mean you can decipher sounds  In a classroom, and there's a lot of background noise. 

Right. I just got distracted. What was I saying?  See, I have attention issues, especially since they messed around with my brain. So you need to give them the tools. And once you give them the tools, then  they do really well,  but until then, they felt miserable at school. But I think I lost the point that I was going to say.

 Yeah, you were talking about background noise And then there was a bus that went by and beeped and I heard it and then I was like, ah, I got distracted, too  Yeah, and kids get lost in class all the time and then there may have meant you know of the non measurable measurable things by the  And then they don't get the support.

No one's going to tell them but the workforce, particularly now , in the world, the workforce is actually leading towards integrating people with all kinds of diversity into the workforce because they realize the significant benefits, but a parent, the discussion as a parent, we had with our kids, and maybe this will help somebody, some other parents with this is to look at your kids.

Like,  I say to my kids, okay, there are two different things. Do you need to choose from what would you prefer an old computer? That can do one or two things and then it's stuck or the newest iPhone. Every kid that I ever met always says, I want a new iPhone.

You know, how many things can the new iPhone do at once? A lot. Okay. But if you don't know how to operate it, what happens? I get lost. I said the same thing. That's what ADHD is. Okay. You have the best iPhone,  but you have 50 things going on at once. You need to learn how to drive that machine.  And if you raise your kids by telling them  that they have the finest equipment, but they need to get the tools to manage it.

And once they do, they're going to be at an advantage in society.  If you honestly believe that as parents and you don't look at them as deficient, those kids are going to believe that too. It's going to take a long time because the educational system can be telling them something else. But if both of you as parents.

support your children that way, you will be happy with them and you will have less conflict with them because they will understand you are supporting them and not looking at them as, as the problem. And they will work on getting the tools they need to develop and give them as much, like I said, they may need a hearing equipment, they may need acoustic glasses, they may need earring glasses, they may need all these other things, but they're not deficient.

They've got different stuff and they've got advantageous stuff, as you said. But they need to learn to use the system. And if it, as parents, if we look at our children that way, and they have a different schlichut and a different brain,  then they're okay. And then we're also okay because we realize. 

There's nothing wrong with it.  Right. And they say, God, God,  before we were born, ask us up in the, up in the heavens, what we're going to go through. Right. And we agreed to come down here.  So  our children also, that happened to them and we are their parents. We were chosen to be their parents, you know, and these are things that can help us feel more positive.

Even when the outside world is telling us  ridiculous stuff about our kids, because they can't support them, whether it be budgets or training or whatever they need, they can't support them. Then they say.  You know, the kid is a problem, it's the system needs to change, and we need to change as parents.  Oh, I would love it if you could change the system, please do, Jackie for changing the system.

Let's talk about grief and God baggage because, you know, like you said, God sent me this detour of what I thought I was,  I thought I was here to have A normal family with normal kids and blah blah blah and I'm obviously using these words, you know, not not as Derogatory, but the way that people feel when they're you know signed up to this thing  and it's exhausting and it's disappointing and there's a lot of  Anger at god and there's also a lot of grief that you have to go through  Of all the things that you painted your life to be like and you have to now readjust so So what are some tools people can use to?

Overcome that and really be able to really show up for their kids. I think part of it is giving yourself permission in the beginning to realize that as some parents will have grief and not everybody.  I have to say I didn't have grief. I, I, I think my,  most people, most people are shocked in the beginning and, and then they're worried.

Like I said, the fear and the worry and, and grief is often though a part of the, because we didn't get what we planned.  But I think in terms of God,

Look, I can't even take it, not only as a parent, but as a person who had a huge brain tumor, and then I was superwoman, and then now I'm disabled, in a lot of ways. It's the same kind of thing. Why did this happen, and all this other stuff. And my path is so different than what I intended to be, and my dreams, and what I dreamed of doing, I'm never gonna do. 

But  I think in some ways to give yourself permission to have those feelings and talk about it. They're pain points and we need, you know, if we deny that we have them, then it's not going to help us. We need to  work through them and get out on the other side. And, and sometimes it takes a long time, sometimes it's less.

But,  but as a person who is, is, is definitely on the other side and all the different things, I, I realized that it's so much bigger than all of us. And We all do have a different purpose in life, and  my kids, and if I talk about my autistic son, who, I mean, when he was young, he was really needed intensive support.

I mean, I was just running after him everywhere, and he had no communication skills whatsoever. He didn't talk until he was after age five. And even now his speeches is fairly limited. And some people could get angry at God or upset.  I can tell you the other side of the coin, which was,  I actually went to the speech this, this hot shot neurologist in New York who, who looked at him.

He said, well, he's four and he's autistic. And if he hasn't talked to him by now,  all these doomsday doctors, which I, Don't have anything good to say about it. He's never gonna talk  and then he looked at us and he's like well You know you can always correct  Like in that sort of  and so we walked out and he says that the person with the communication problems is nothing not  Our son is the doctor, right?

We were pissed.  And  of course we pray.  But the interesting thing was that the very next morning about four, five o'clock in the morning we were sleeping and suddenly my son comes to us and I was woken up by a voice I didn't recognize going, Mommy! 

Okay?  It was like,  first of all God is definitely the boss.  Second of all, when you have a child God that  has  a serious challenge.  You learn to appreciate every little thing that most people don't even see, and they certainly take for granted.  The fact that any of us, the fact that any of us can open our eyes and talk and get out of the bed and eat and swallow, and this person again, that I wasn't able to do any of those things myself for a period of time and you start to realize that every single thing is a miracle.

And  Therefore in a lot of ways if you get past that original I'm disappointed because this is I Realize somebody else which is god this divine power has a different path for you And that everything he does  is what needs to be done And it is a miracle you learn to appreciate all those miracles all the way and and readjust the path  Now we're human and we're not perfect.

And so there are days of serious work,  but it's always that doing that work of realizing, right?  And I can say as, as my son I would say he's the most beautiful person I've ever met.  He has never, ever hurt anybody in his life and I can't say that about it.  People, as a general rule, most of us mess up at some point he's never intentionally  hurt anybody, never   and everywhere he goes, he just wants to do good, and, and that's the pure soul, and that, and because we're living next to such a pure soul, we've all had to become better people as well,  and wherever he goes in the community, they, we were lucky we had a very supportive community, and one thing I have to say about the Jewish community is, Some communities are not supportive, and if you, if you're not one that is supportive, find a different one, because, if you're a family that's family embedded in a supportive Jewish community, it's an incredible source of strength.

And our community, I mean, when he was young, I would run around him  everywhere we went in synagogue, but he became part of the community, and now as an adult, and even though he's not that verbal, he knows, he understands. He's such a part of the community, and whatever he can say, he says in they let him read in the Torah when its his Parsha and everybody's, every, the whole community cried when he did all this.

So,  you can have a big family, and everybody can see the beauty  of this person, this child as he grew up. And you can't see that in the middle. They say if you're in the middle of a Nisayun, you don't, you don't understand why it happened, right?  So in the beginning, it's like a, it's a child, it's a Nisayun, but after that, If you, if you, if you go with the flow, you realize  it's a gift. 

Yeah. Just translate Nisayon for people because not everybody speaks Hebrew. Trial. Okay. So when you're in the middle of a trial, you can't You're not going to figure it out. I can say the same with myself. I mean, I certainly couldn't see the good in what happened when I had my  brain surgery.

And I, I mean, I had to learn to walk, talk, do everything all over again. And, and  a couple of years I was really out there. But if I hadn't had all my senses scrambled, then I wouldn't be doing what I'm doing today. I wouldn't have written my book and I wouldn't be speaking around the world and I wouldn't be doing all these things and helping people.

So  at the time I had no idea.  And I, I couldn't, you know, I could have been pissed off with God about that because a lot of people are in that situation, you get bitter, you get frustrated,  but I realized that I just don't get it.  It's too big for me to understand.  Like every other place is hashgacha, is the God oversees, what's going on.

In these things as well.  You know, I'd like to hope that that's what's going on in the world today too, because I'm having a little trouble accepting that, but,  but,  you know, it's, it's all part of our, we only see a very minor part of what's going on.  Yeah. I think it's really important to realize that when you are  feeling angry with God, when you're feeling  confused and annoyed and what do you think you're doing and you should have known better.

You know, these are things that all of us.  Like, you know, it goes through your head. And then the question is how, how strong is your belief? How much have you really fortified yourself with good thoughts and with a good relationship with God and with, you know, learning the sources of whatever it is that you need to do in order to really  have that solid relationship to be able to say, you know what god i'm angry with you But at least I know it's you, you know At least I know it's coming from you and i'm not very happy about this But i'm willing to tell you about it because I have a relationship with you, you know Like one of the best exercises that I love is when you're angry with god write him a letter tell him You know turn to him and say i'm angry and i'm allowed to be and I understand that You Just because I'm angry doesn't make it wrong or not okay that this is what's happening, but I don't understand it.

And it's frustrating me having that conversation now leads you to say, can you give me the right skills, the right tools, the right guidance, you know, help me   and then God can give you answers and be there for you because you've turned to the right place. I, I say to him not, not in  anger, but I certainly say to him, you know, What do you want me to do with this? 

I don't understand this. Why? What am I supposed to do?  And be thankful for things you do have, because a lot of things we don't realize. One thing I think that helps me  every night before I go to bed, right before  I fall asleep, I say thanks for all the little things that I was able to do during the day.

And I'm talking little stuff, like, you know, even if it's that I was able to get out of bed or make food earlier, or Or speak or whatever, or the big things as well. But even down to that little, because I know that  nothing should be taken for granted. It's a person who has been unable to do a lot of those things.

So I list a number of those things, you know, like, thank you. And then I asked for help for the rest of the stuff that we still need to work on every, every single night. And, that does help me feel more at peace and It gives me strength to keep going and I, again, and that deep understanding that we're just clueless.

I mean, as much as we think we know stuff,  we just have these little brains. I mean, God is infinite. We're just tiny things.  There must be.  And I, I didn't grow up religious, by the way, I grew up in an atheist house  in America.  This is all because I've just seen so many things along the way that made me realize that. 

Things do not happen randomly. There is a plan, God. And we are on a journey and, and God keeps giving us these, these challenges because it's part of our journey. And we just need to keep moving forward on our journey, which is why the book's called Moving Forward, by the way. Just wherever we're at. And, and there were, again, there are days we'll succeed in that, and there are days we will fail.

 And it's all part of the journey. We just have to keep picking ourselves up and going. And I do believe that God is listening.  Yes, I love it. I love it. This is just incredible. Jackie, where can people find you? Where can they find your book? Where can they work with you? They can find me on I have a website.

It's jackiesbooks. com. J A C K I S B O O K S Without the E at the end. jackisbooks.Com so you can find me there. And you can find me on LinkedIn. LinkedIn. Just my name, Jacki Edry, J E C K I E D R Y. Again, my parents wanted me to be unique so they didn't put an E at the end of my name, which is highly unusual.

And I really, I love helping people and linking up with people. I believe that that's my mission in life when, when that's why I do what I do. And I've also started lecturing specifically about sensory processing and parenting and education and, and. All those things  with neurodivergent kids.

So if you want, please reach out. You can find me through my website. You can find me on LinkedIn. You can find me on Facebook and I'm happy to  make up and speak with you.  Yeah, and all the links are going to be linked down in the show notes or in the comments and this has been Incredible. I think you know One of the biggest takeaways is give each other permission To react the way you need to react and to go through this the way you need to go through this and to process whatever is happening on your own terms in your own way and When we can hold that space for each other  especially  in situations where things are difficult,  then we're setting ourselves up for success.

Sure. And then the second thing that I really took away from today is, get help get the coaching, get the therapy, get the support, whatever you need. And I heard once somebody said that if you have an intense child, you need an intense self care. Regimen, right? Because  you need to up your game in order to be there for them.

So definitely, realize that this is a full time self growth process and be willing to invest in that. And don't let yourself pretend that you can do it alone because you're not expected to.  No, that's why there's community and that's why there's family and that's why there's friends and that's why there's therapists, if you need, but,  but to find the positive, because sometimes these therapy groups and therapists, they tend to be kind of negative looking at all the  things that are wrong and need to find the people that are working with you that will actually look at all the things that's right, because if you flip the switch and see that you're on a journey  and the positive things in life, , it's not, it's not something necessarily negative, then.

And that it's going to take you someplace far than that mindset and the people around you who have that mindset, then you empower each other and that's where the place to go. I think that's, that's the people you want to find to support with all this stuff  and work together. Absolutely. Just because you're getting an insurance or something to get a certain therapy, if you feel it's not working, don't do it.

Again, you may not need therapy and you may, you may, but you need the support. You must, must, must  find a supportive group. Sometimes parents have been down the route before you and they're positive people.  You need to  hook up with them because. It will empower you.  Yes. And faith. And faith absolutely helps because without that, it's really hard to  get through life, I think. 

Yeah. Yeah. I think in general,  , yeah, absolutely. Right. Life Without God is is a very difficult life. Empty, empty, empty. I've been there,  , like I said, I came from the other side. . Yeah, I, I don't know how it can be very empty.  Yeah,  thank you so much Jackie for being here. You are incredible. I'm so grateful I was able to get you onto my podcast.

This is the real treat. Likewise.  Yes, I love it. And for all you listeners, thank you so much for being here. Don't forget to stay connected for real and we will see you next week with another amazing episode.

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Can you share it with them?  I am Rebbetzin Bat chen Grossman from  connectedforreal. com. Thank you so much for listening and don't forget you can be connected for real.