The Nuclear Families Evangelist
The Nuclear Families Evangelist
Advice For (Step) Parenting a Special Needs Child
In today´s episode of the ‘Nuclear Families Evangelist’ (A podcast that debunks the mythologies and biology by exploring the dynamics and relationships in blended families), host Traci Dority-Shanklin (Managing Partner at Sisu Partners) once more talks with guest Natalie Hale, parent of an adult son with Down syndrome, an advocate and an award-winning author who writes books for children with Down syndrome, ADHD and Oppositional Defiance Disorder or ODDS. She is also a national and international speaker and an innovative educator in the field of literacy for individuals with Down syndrome, the founder and president of special reads for special needs (An educational program designed to teach reading to individuals with Down syndrome, ADHD, Autism and other Developmental Delays). Natalie talks about her journey to special needs, she shares some tips for blended families who have family members with these types of developmental, and educational delays.
Resources:
The Whole-Brain Child: 12 Revolutionary Strategies to Nurture Your Child's Developing Mind by Daniel J. Siegel, M.D., and Tina Payne Bryson, Ph.D.
Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier by Natalie Hale
The Little Star’s Journey by Natalie Hale
Managing My Money: Banking and Budgeting Basics for the Child by Natalie Hale
Breaking Free of Child Anxiety and OCD by Eli R. Lebowitz, PhD
Nonviolent Communication: A Language of Life: Life-Changing Tools for Healthy Relationships by Marshall B. Rosenberg, PhD
Where to find Natalie Hale:
https://www.facebook.com/DownSyndromeReading
Three Key Points
1. Natalie shares a piece of advice for a woman who's about to become a stepparent to a child with Down syndrome specifically. Get your resources lined up and get informed.
2. Traci mentions, the Book by Natalie ‘Oh! Brother Growing Up with Special Needs Siblings’. To her, it is a book that if one is getting ready to be in a blended family, they should read.
3. Natalie shares how the coronavirus pandemic affected special needs children.
Contact:
Traci Dority-Shanklin: LinkedIn Twitter Facebook
traci@sisupartnersllc.com
website: www.nuclear-families.com
Welcome to the Nuclear Families Evangelist, a podcast that debunks the mythologies of biology by exploring the unique dynamics and relationships of blended families. It's time to unlock the hidden superpower of being blended. So here's your host, Traci Dority-Shanklin. For those of you just tuning in, I have been speaking with international speaker and award-winning author, Natalie.
Traci Dority-Shanklin:Natalie co-founded special reads for special needs, an educational program and platform designed to teach reading to individuals with down syndrome, ADHD, autism, and other developmental delays. I asked Natalie to come on the podcast to share some tips for blended families who have family members with these types of developmental and educational delays. In the previous episode, Natalie shared her inspiration of how she came to develop her program and her experiences as a pioneer in this important field of education. So again, I mentioned that the Nuclear Families Evangelist is geared towards step-parents and people who come into or are entering into or already in a blended family situation. And they may have stepchildren or about to be a step parent for a child. That has down syndrome or ADHD or autism or some other learning differences. And I'm sure there's tons of questions, but do you have any piece of advice for a woman who is about to become a step parent to a child with down syndrome specifically?
Natalie Hale:So are we going to assume that she already has children? So there's going to be a blend.
Traci Dority-Shanklin:Yeah. It can go either way as you know, but probably there's usually a blend in the case of, in the case of nuclear families.
Natalie Hale:The first thing I would recommend is get in touch with your local down syndrome organization. Get in touch with the local one, get in touch with the national it's the national down syndrome. Congress is the name of the big mama in our country. The NDSC national down syndrome Congress, and there is a once a year. Massive. Conference which this year is going to be a new Orleans. I say it that way. Cause I'm from new Orleans. Sorry about that. That's all right.
Traci Dority-Shanklin:You're allowed.
Natalie Hale:I could have said"Nu Orlens". I learned how to stop saying it that way, but get information. And for instance, the NDSC conference once a year, like I said, it's only once a week. Oh, my gosh, the information you get there. I mean, there are too many choices. You don't know which ones to go to. And very often the mom and dad will go. And so they split up so that they can get the information from these various breakouts. That's a phenomenal resource, which will change your life. Locally, you never know what the local down syndrome association offers or doesn't offer, but that's a good place to start. The other thing that's essential is get in touch with the regional center. Now it's going to have a different name, no matter where you live, what state you live in, but the regional center. Is the organization that is responsible for hopefully funding you with whether it's respite care or education materials or whatever, so that you don't have to put the bill for all of that, because you're already going to be footing the bill for speech therapy or physical therapy or OT, et cetera. So get your resources lined up. That would be number one. What can a, step-mom do to be part of a winning team to help a special needs child thrive? to work with the parents and the ex wife in this case, in this scenario. Oh, this is tough. Yeah. This is tough because, okay. Have you ever heard of nonviolent communication?
Traci Dority-Shanklin:Yeah.
Natalie Hale:Because what you're describing is a situation that's going to require a really delicate maneuvering. It would be very easy to cross over and offend someone. Or do you understand you, you know what I'm talking about? So to study non-violent communication, you can just get the book on Amazon. There are lots of books there's actually NBC for, I think, for the family, for the teacher for there's more than one book. To tread carefully. First of all, get the information yourself, get really well informed. And sometimes you can be better informed than the original parent, because the original parent is overwhelmed. They're just overwhelmed and they're overwhelmed emotionally. So whatever information they've gathered and what their experience has been, it's going to be different from yours. And sometimes the step parent can bring the child further by leaps and bounds. And I'm not dissing the parents. I'm the, I'm one of the original parents, but let me give you an example. So my son who's 37 now. Oppositional like crazy meltdowns. Lots of meltdowns lots and lots of meltdowns. I found all kinds of strategies and techniques and ways to approach him, which work that was great, but they would work for a little while. Then I'd have to come up with another one. So I studied like crazy all these behavioral management things, which is why in my parenting book, I've written a book called down syndrome parenting 1 0 1 must have advice for making your life easier. Two of the chapters are for non-compliance. They're just techniques, but one of the things I mentioned it, and what could be really helpful is that approach the NBC approach to dealing with this very complex situation you've got. Okay. So the example is, so I did all of that and did a pretty good job. He has been in his own apartment with a caregiver now for 14 years, thanks to the regional center because at the time when he was ready for that, or we needed him to be ready for that, he was 22. He loved the idea of an apartment because he saw that his sister was in an apartment and wow. Zero parents around. Oh, this was cool. Right? So he's been an apartment with a caregiver, but we struggled for years to try to get the right match for a caregiver. We had settled on a company, but we were not happy with the caregiver that they provided and, or the next one or the next one. Finally, three years ago, three and a half years ago, we got a new caregiver, same company, but we found this dream of a match from heaven. So Jonathan's 37. Omar. His caregiver is 20 years older, 57 from north west Africa. They just get each other, they just get it. And its hard to understand Jonathan's speech a lot of the time. And it's hard to understand Omar speech a lot of time. Cause it's just English is his fourth language. But by golly, they understand each other.
Traci Dority-Shanklin:That's really the most important thing.
Natalie Hale:Omar was very helpful to both Jonathan's dad and me saying, you're not treating him like an adult. If he wants to stay up till 11 o'clock on his computer. excuse me, do you stay up till 11? If you want to? And here I am fretting. Oh, he's not going to get enough sleep and all of that. So Omar really trained us and we realized, oh, he's right. Somehow Omar's approach to Jonathan. And the fact that Jonathan knows how much Omar cares has transformed his socialization, his behavior is it's amazing. It's amazing. He's gone from staying in his room the whole time we realized partly because he didn't like the caregiver. That he had at the time, staying in his room this whole time being glued to his computer. So he can do his music and dance and never leaving the room except for meals. Never wanting to go out. He's gone from that, to Omar's, create an, a monster now down at the same. Hey, let's go shopping. So now its Jonathan wants to go shopping five days a week. Jonathan, we're gonna pull back here. That's awesome. So you mentioned a bunch of things that I think will be, could be really helpful to our community. And I do think that. Parents, but stepmothers in particular can sometimes provide that objective viewpoint that you're mentioning. So I think that's a really important thing for anyone who might be entering a situation like this, but you talk about something that maybe is, not, maybe is something that step-parents have to deal with, regardless of whether they have a special needs child, or, once a kid hits teenage years, The non-compliance is the problem. So you don't have to have ODDs to be noncompliant. So I think that's a really important thing to acknowledge. If not, to give specific advice. it sounds like your book would be an amazing resource, if not, for anything other than those chapters. There was a minute in the early part of my journey to motherhood, where I was being told that one of my little girls had ODDs. I think it's just, again, she comes from a traumatic beginning. So we fortunately have overcome that fight, flight, or freeze, moment in her life. But there it was a challenge. And so I say that knowingly to anyone who's listening, that this non-compliant thing is really difficult. And if you already have children, you know it, but if you don't and you're just jumping out of the frying pan into the fire of being a caregiver, it's a really important thing to know, and to look for resources. And also you, the third thing that you pointed out was all the accommodations that we want to make for our children when they're struggling or when they, we want to just keep the peace when they're in this defiant modality. And I want to say to step parents out there that you have to be really cautious because as a stepmother myself, that's how I became a mother first was through being a stepmom. I know that I wanted the kids to like me. And so I made a lot of accommodations and then I've even done it from my own children. That part of my personality has carried through. I've probably been a little bit different with my own children than I was with my stepchildren because they just, by virtue of age, they were older when I met them. But I really think that those are three really important things. So to the listener who is either entering the situation with a special needs child, please get one of Natalie's books. This book on parenting sounds amazing. And if you are not, you may want to pick it up just to read those chapters on defiance and non-compliance. I love to give two techniques. If I could.
Traci Dority-Shanklin:I would love that I was going to be my next question is okay.
Natalie Hale:And this is for your neuro-typical maybe the siblings of a child with special needs or the individual with special needs. It works both ways. It's what these two techniques. Across the board. One is what I call the"fantasy pause." And I got this from Dr. Han Ganate. One of his techniques. I just gave it the moniker of fantasy pause. So you indulge the child wishfully, but not in reality. And I'll explain. So Jonathan was, I don't know, eight or nine when Little Mermaid first came out the very first one and he wanted to go. Now to see The Little Mermaid now, and he was on the floor having a complete meltdown and I remembered this technique, okay. So I sat and he's howling and carrying on. I sat down next to him. And I said,"Oh boy! I wish we could go to see The Little Mermaid today". And he starts, his volume gets, his volume starts dropping. I said, that would be so much fun. we could go, we could sit in the front row and I went on and on. And of course he's completely silent by this time. And I said,"Oh, that would be so much fun." And he's going,"Yeah." So I, I kept going until I knew his, the volcano was down. And then I said,"But since we can't go today, Saturday, would that be okay?" Yeah. Okay. And it was all over. In a similar, because you're honoring his desire. His wish. Now there's, let's go to the second technique, which works beautifully for teens and adults, as well as. And that is just simply honoring what they're feeling, letting them know you get it, you understand exactly what they're feeling, which is why they're acting that way. Okay. So example, several years ago, before Omar had really had become Jonathan's caregiver, I was visiting. I live in LA Jonathan lives in Cincinnati, where I raised him and where he got the vouchers for a paid caregiver. So his dad and I do not have to put that bill. This was this like a miracle? All right. So I was visiting I'd flown cross country to Cincinnati to visit Jonathan, which of course they do a lot and he had three computer problems that needed fixing urgent. Cause Jonathan for him, the computers, everything. So he has a big Mac. So he had to stay in, nobody touches his computer ever, but he condescended, okay. I could sit in front of his computer. So I'm on the phone with apple for two and a half hours trying to fix these problems. Jonathan's in the other room with the caregiver and I could not solve the third problem. And Jonathan knew that he could hear it. So he goes into a huge meltdown and it gets worse and worse. two and a half hours a minute. And he's in a complete meltdown. And he starts yelling. Mom goes back to Los Angeles, no video with mom today. No movie with mom today. No, it's not. It's completely lost it. And the caregivers trying to console him. That doesn't work. So I left the computer. I came and I sat down beside him. I didn't touch him. He was not ready to be touched, but I sat right beside him. And I said, I just got quiet. And"that is so disappointing." Immediately stops yelling."Yeah.""You are so disappointed. It's so frustrating that I couldn't fix those problems for you.""Yeah." So I just kept saying what he was feeling and then suddenly. This is typical of Jonathan. He gets in a bad mood really fast and he can also get out of it. So he's sitting there and he kept saying, yeah. And he's completely down by this time. Okay. And then suddenly goes, Supper with mom. Movie with mom, throws his arms around me and hugs me. All smile. Yeah. I posted a video about this on, I have a Facebook pages and YouTube link.
Traci Dority-Shanklin:We'll link all that in the show notes.
Natalie Hale:And so I posted, I made a video about that posted it. And one of them, one of the comments was I tried that tonight with my typical teenager, and it worked like a miracle. I was blown away.
Traci Dority-Shanklin:It reminds me of, I think it's from"The Whole Child" book that I mentioned The Whole Brain Child that I mentioned, which I'll also link in the show notes, but it's the"name it, to claim it" kind of thing. Like where you name the discomfort. Yeah, and yeah, you just say it and then it takes the energy out of it. And if you help a child learn that ability and yes, it will work with teenagers or preteens in my case.
Natalie Hale:You're honoring you're acknowledging, this is what you feel. You're not saying it's not okay for you to feel that or you're, this is what you're feeling. Okay. And for a sibling of a child or teen or whatever with special needs, this is urgently important to draw that out of them. Because a lot of our siblings, like my daughter are going to be too polite. They're not going to really say how they're feeling. And then years later they're going through therapy because they need it because it wasn't processed. It wasn't honored. Like it's okay to be really angry. At him at your brother or whatever. So this is the book that I wrote for sibs of, and I know you were going to give them information, but there are a lot of things in that book was published by the American psychological association. So in that case, I needed not only to please the editor I needed to please a team of psychiatrist. And one of the things they insisted on, which I hadn't written, I had acted it out in my own life with my daughter, but I hadn't written about it and thought, oh yeah, we need a chapter on that. Because each chapter is a coping technique for them. They said, we want a chapter on how the parent should not make the sibling another parent. And I went, oh yeah, exactly. And I had been careful to do that with my daughter. Like you're not the parent, I'm not making her responsible for her brother when she gets to be 40 or whatever. And she has to, you know, when her parents pass on and she has to take that over. That's another thing, but not now. Anyway, they, I had to be approved. It had to be psychologically sound and I in my work with families, it just it's so saddens me when I see the family comes in the kids out of control because he has DS and autism and has never had that secondary diagnosis done. Whoever the medical establishment or the teachers whoever's dealing with them say, oh, well, you know, it's just down syndrome. It is not up to 20, 25% of our kids with DS also are on the spectrum. and that's a kind of a new realization like, oh yeah, okay. We have to have this diagnosed so they can get the services, get the training. But when I see a family come in and the kid is completely controlling the family. And I see the poor siblings, just the sadness on their faces. No, that's not. Okay. We don't let that happen.
Traci Dority-Shanklin:Yeah. It's hard. The family dynamic and the family makeup is a really difficult one and I it's, and this is very relevant to blended families. very relevant. Really the book. Oh brother, growing up with a special needs siblings to me. It is a book that if you are getting ready to be in a blended family, you should read it because there's going to be something there's. there is going to be some, whether it's special needs taking that out of the title, the rest of it is so relevant. And what you're saying about how these families. Start to fall apart or there's a lot of sadness or weight to them because everyone is walking on the eggshells, Of the one child, you have these children who they're getting the attention that they're going to demand that they get the attention they need and want and need to have. It's not that I'm suggesting that they don't, but there's always a sort of a silent suffer.
Natalie Hale:Oh, absolutely. Absolutely. Absolutely.
Traci Dority-Shanklin:And that is really true in blended families. There's and it can, again, it doesn't have to have special needs does not need to be part of it, which was why I wanted to bring you on the show. I know you're quite a prolific author. Can you tell me how many books you've written and you want people to know about them? Besides you obviously have this amazing program and you've written a lot about families and dynamics and Down Syndrome.
Natalie Hale:Okay, yes, five so far. My first book I really would like to mention here and it's called the little stars journey. It's a book originally. I wrote it. It was a published by a psychological firm. And I illustrated it as well. I wrote it for survivors of any kind of abuse, any kind of difficulty. And to my surprise, I learned later that someone had taken it into a children's cancer ward at a hospital. And it's, it's got a very happy ending, but the star goes through some really rough things. So that was my first book. And I've also written a money management book for our teens and adults with difficulties, with learning difficulties, it's called managing my money banking and budgeting basics. And if you just go onto Amazon and just type in my name, I'm sure these. So then there's the parenting book and the reading book and I guess that's five.
Traci Dority-Shanklin:That's great. That's great. It's amazing. Yeah. It sounds like you haven't stopped between raising two children. Is it just the two?
Natalie Hale:Yeah.
Traci Dority-Shanklin:Yeah. And doing all this. This is a wonderful story. I feel like almost every conversation I have today, I have to touch on the Corona virus pandemic, and really, it's an impacted everything in our society. And I'm just wondering as an educator, how has the Corona virus pandemic affected special needs children? You mentioned services.
Natalie Hale:Yeah.
Traci Dority-Shanklin:And I can only imagine that it's impacted the learning services that they're getting as well.
Natalie Hale:Very much, so very much. So it's been very frustrating for parents who cannot homeschool. What has happened is in the arena of down syndrome that many parents had to turn to homeschooling because virtual learning with our kids doesn't work. It doesn't work. Even if mom is sitting right there, which of course takes all of mom's time. It doesn't work with this particular disability. It just doesn't. So a lot of parents did turn to homeschooling. A lot of people turned to my reading program during the pandemic. Yeah.
Traci Dority-Shanklin:That was my next question is, have you seen a big increase?
Natalie Hale:Oh yeah. And then instead of traveling to give workshops, I began to give virtual workshops. Like we do two hours, three weeks in a row, that kind of a thing. And which was great because it enabled me to give parents homework. Okay. Next week when you show. This is what I need to make sure you learned that kind of thing. Yeah.
Traci Dority-Shanklin:I had a previous interview with two women who have a organization called virtual milestone academy where they help parents navigate getting the services they need. Especially in wake of the pandemic. do you see any long-term changes in the education system or how services are provided to families?
Natalie Hale:They're just barely restarting. So we're limping along here. I'll tell you one thing that has happened that I don't know what the end result will be, that there are many moms who, who have said to me, My daughter has learned more at home in homeschooling with me in six months. Then she has in six years in school, she just, they don't know how to teach her. So how that will impact the classroom eventually. I don't know. But one of the things that I do to try to help that along is that whenever a school orders my program, even if it's just one teacher at the school, if they order the whole program, I meet with them for an hour. I train them for an hour, the whole staff, any staff that's going to be implementing it. So at least they know. At least they've had some exposure. Hey, this is how our kids with down syndrome, autism developmental delays. This is the easiest way for them to learn, to read. For example.
Traci Dority-Shanklin:That's very needed. As a woman and a mother and an educator. What was the best piece of advice you've ever received or that helped you the most in your life? I know we talked about the book and meditation, so I'm gathering, it's going to go in that direction.
Natalie Hale:What is that? The quote from Shakespeare?
Traci Dority-Shanklin:So good.
Natalie Hale:Know yourself, be at peace with yourself, be in tune with yourself and the self capital S. God within, the higher self withi. Just stick to that, because the boat you're in is going to be just lashed by waves. And you've got to have that to hang on to. All of your decisions. Deciding which lead to follow is all going to come from that anchor. And if you don't have the anchor and you're going to be tempted not to sit and be with yourself and even just simply practicing a simple, simple breathing technique, like Thich Nhat Hanh for example, I'm sure most people know who that is. A Vietnamese Zen monk who recently passed away at age 90 something. And he would just. It's all about breathing in my body, relaxes. Breathing out, I am smiling. And you can change whatever that is. But you actually are breathing in and mentally you're thinking, breathing in my body, relaxes, breathing out, I'm smiling. I changed the words up. it makes you breathe, which oxygenates your brain. Just be with yourself, actually know yourself. Don't run away from yourself. That would be my best advice.
Traci Dority-Shanklin:It's great advice.
Natalie Hale:Oh. Here's the other thing I would tell parents, trust your gut, which is pretty much what I'm saying already. If a teacher or a doctor says this, blah, blah, blah, blah, blah. And you think in your gut? No, that's not right. No, that doesn't feel right. I think there's something else going on here. And I think it might be in this direction. Trust your gut. You're the actual authority.
Traci Dority-Shanklin:Yeah, that's great advice. And it's advice that I've been given and you really have to be an advocate for your child and it is not easy. So I really think that's great advice. I know that we shy away from the negative, but is there any advice that you've ever received? And I say this as a parent, who's. A lot of bad parenting advice. and I mean that with all love to the people who have given it to me, but they, but most of them come at me with the understanding of my children's journey to this place. So that's why I'm asking the question. is there any advice you've ever been given. That you thought you needed to say don't ever do that? Like I know.
Natalie Hale:Yes, there is. Yes. And actually I've written about this in the down syndrome parenting books. So Jonathan was about two years old and we're with the OT in his session. And he said, he's trying to put the little wooden pieces into the puzzle pieces into the spot and he couldn't do it. And she said to me, he should be able to do that by now. And then my book and my book, I said, who spit in her coffee? That was awful. That was awful. And, but I was new. I was new to this whole down syndrome thing. And now you, you start thinking, oh, I guess he should do this. Oh, I can't do. No, forget it. Listen, this kids going to be reading when he's five years old. I bet that's better than your's... His fine motor was always poor. He didn't learn to write. Be able to write until he was 15. So I had to search out the right method and that was Handwriting Without Tears.
Traci Dority-Shanklin:Yeah. That's really great. Yeah. I actually, we use Handwriting Without Tears, so I know that it's great. So I know that we're going to link this all in the show notes, but how can our listeners find you and the Special Reads program?
Natalie Hale:My website is specialreads.com. So that's easy. My Facebook page is, down-syndrome reading with Natalie Hale. That's my reading page. Of course, I have a personal page. That's under my name, but it's down syndrome reading with Natalie Hale. So if you go there like it, then you're going to get all my posts. And my YouTube channel is if you'll just the fastest way to get there is just type in Natalie Hale down syndrome. And that will bring up my profile picture, click the profile picture and you'll get to my actual channel.
Traci Dority-Shanklin:Great. Is there anything that we may have missed that you'd like to share with our listeners? Or is there anything that you would like for listeners to know about yourself or the special reads program?
Natalie Hale:Just one piece of advice. There's a Southern saying, cause I'm from New Orleans originally. There's a Southern saying,"Ain't mama happy. Ain't nobody happy." So whoever the main caregiver is, and in most cases it is mom. Take care of yourself. Now this will be almost, you'll think this is impossible to do, but take care of yourself. Spend time, centering yourself, breathe, breathe, get off by yourself.
Traci Dority-Shanklin:Such good advice. And especially in blended families, when you're bringing in to your environment, an environment that you don't know about. And I think something that you just, you said right before that, about being told that your son"should" be able to do a certain task. And I think it's really translating that and giving yourself. Permission to know that there's no should here. There's nothing that you should be doing differently or that you should know. it is a journey and it is a process. And as long as you're mindful and you want to grow in a positive direction. That these, all of these different types of blended families and dealing with children with differences is really, it is something that you can endure and thrive through. I feel like it's part of how I got to my mission to do this.
Natalie Hale:We're all on a growth.
Traci Dority-Shanklin:Yeah. And you touched on this at the beginning, is that everything kind of pointed, like what's the next right thing to do now. And I think that is a really valuable life lesson that we are on a journey and we never, sometimes we don't know what's next. And it's really trusting that when we do get to that crossroad and we have to make the decision to go right or left or straight forward, we'll know. If we're living in our truth and our authenticity.
Natalie Hale:Yes. Yes. Yes.
Traci Dority-Shanklin:Thank you Natalie, for being a guest today, you're such a light and I know you're just changing lives with your work and your passion. And you're really inspiring. I now have somebody who I can look at as an expander and think like this is definitely. If she can accomplish this, there is definitely room for growth for me,
Natalie Hale:Traci. Thank you so much for inviting me. I've enjoyed it.
Traci Dority-Shanklin:Oh, I'm so glad. And thank you to our listeners for tuning in to the Nuclear Families Evangelist, where we enlist experts and humor. As we help you unlock your hidden superpower of being. Like you, I live in breathe. My nuclear families every day. I am a wife, a mother through marriage, a mother, again, through adoption and a daughter from an eccentric family with multiple marriages and multiple blended families. I want this show to be part of the healing and changing the picture of what makes a unique an imperfectly, perfect family.
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