Episode 119: September Emphases – Craniofacial Awareness and Hispanic Heritage

In this episode we discuss two of the topics emphasized in the month of September and some great books that go along with them: Craniofacial Awareness and Hispanic Heritage. Plus we have a giveaway! Check it out, enter the giveaway, and find links below.

Books Discussed in This Episode:

Transcript with Links:

Welcome to “Books that Spark,” a podcast for parents and caregivers, celebrating books, that spark imagination, emotion, questions, and discussion, leading to teachable moments with our kids.

Today, I wanted to talk about craniofacial differences and clefts. My two older children were born with cleft lips, cleft palate. When they were young, there were really not many books written for children to help them walk through some of the things they’re going to deal with–the emotions they might have, or if a sibling is being born with a cleft and you want to prepare the child for that baby being born. They just didn’t have that many books out. Anyway, I didn’t find any. There were some great materials for parents, but very few for young children. And I found some great books for young children. Plus September is Craniofacial Acceptance Month, and it deals with craniofacial differences, not just clefts, but craniofacial differences. And then I missed Craniofacial Awareness and Cleft Prevention Month, which was in July. Today we’re going to focus on clefts because that is what I know the most about and how we can share some great books with our kids dealing with clefts and some craniofacial differences.

The first book I want to share with you is called Jack’s New Smile: Having a Baby with Cleft Lip and Palate. And this one is written by Ruth M. Trivelpiece, Suzanne N. West and Jennifer L Rhodes, M.D.. All three of these are people who are professionally dealing with children with craniofacial differences, with clefts. They’re educators, they’re speech therapists, nurses, medical people, and then the illustrator for this book is Brooke Nunez. And the drawings in this book are really cute. Very beautiful. You’ll enjoy those, but this is a great book for helping a sibling deal with the new baby who has a cleft. The first question you have most children ask is, “Does it hurt?” And they deal with that and tell the child, “No, it does not hurt.” And it’s just an opening. It’s where the lip has not closed during the developmental process within the womb. And so it just clarifies all of that. It answers a lot of questions a child might have. A child who has a cleft, especially when they’re a baby, the food will sometimes come out the nose, and this might be kind of freaky to a little kid. And so they can know what to expect, that this is normal and how to deal with all of that and help the child to accept that sibling. Most of the time, a young child, toddler, doesn’t have too many problems accepting a baby with a cleft. It’s just their sibling and they love them just like we do. When we see their little face, we aren’t looking at a cleft. We’re looking at our child.

My favorite book, I think, of all the books I found is called I See a Smile: Preparing Families for a Baby with a Cleft Lip. And it’s written by LaTasha Reinhardt and illustrated by Emily Hercock. This one’s beautiful. It talks about this little boy. “When people look at my baby brother, they see a cleft, but I see a smile.” And after the surgery, “they see a scar, but I see a smile.” And it’s just so well-done and such a beautiful story. And this one also is more Christian-focused. It shows so much love between the siblings, and the support the older brother has for his little brother, and the acceptance of family has.

One of the things, too, that we’re seeing now, because we have the 3D imaging. Ultrasounds are clearer than they were probably 20, 30 years ago. But especially the 3D imaging, we can see what the cleft looks like or that it’s even there before we have a child. When I had my first child, we didn’t even know she was going to have a cleft. I didn’t have ultrasounds done. I could have, but I didn’t. I chose not to. And then with my second child, we didn’t see the cleft. When we did an ultrasound, we just didn’t see his face. We were seeing the rest of his organs and things like that, but we didn’t see the cleft. After that, with my other two children, we did try to see if there was a cleft, and both times we could see the profile of the child. And I could see that the nose was not cleft, you know, was not flat like a cleft makes your nose go flat. And so I knew that they probably did not have a cleft, at least not a cleft lip. There might have been a cleft palate, but back then it was harder to see. We didn’t have the 3D imaging. I think with my fourth child, we had it available, but I did not do it. And now it just seems like standard practice. And so I have a lot of friends, or a lot of parents I’ve heard from in a group I’m in that they’re trying to process this before the child is born, dealing with it. And so I came from a different situation. I dealt with it all after the child was born because we didn’t know it was there ahead of time. So they’re having a lot of time to prepare family, to prepare siblings, but also to be concerned, to not know how they’re going to respond to their child. Of course, the minute you see your child, you fall in love with that little face. It doesn’t matter that it has a cleft. That’s hard to tell a person when they’re pregnant because you don’t know how you’re going to respond. And you’re always concerned you’re not going to respond well. But most of us fall in love with our baby immediately.

Another one that we have is called Beth and Her Cleft, and this was written by Dr. Nicholas Bastidas. And he also has the Saving Faces Foundation. It’s illustrated by Natalia Scabuso. Now all three of these books, I’ve mentioned have a lot of good information in the back of the book, a lot of links to different resources for families who are dealing with clefts and surgeries and all of that, because most children have quite a few surgeries in repairing their clefts. It’s not just a simple one time and done type of surgery. It’s a much longer process. In fact, most children don’t finish all of their surgeries till they’re teenagers. So people who are not living through this don’t often realize that. I know when we first started dealing with it, I had no idea. I thought it would be one surgery, close the lip, we’re good. You have feeding issues, speech issues, plus all of the repairs for the plastic surgery and helping the child to have a normal bridge in their mouth, a normal palate, and be able to breathe and eat and hear well because all of that is affected with a cleft. Most cleft children have to have tubes in their ears. Eustachian tubes are underdeveloped as a part of the cleft most of the time. And also they can have other midline issues in the birth defect. It might include the heart. It might have something to do with anything along the midline of the body. And so this is something to be aware of that parents may be dealing with more than just a lip. Most parents are kind of sensitive to how people respond to their child. We see that child as beautiful. We don’t see that child as a mistake or a problem. We see them as our beautiful child, and we love them. And some people are always like, “Oh, it’ll be okay. Your child will be beautiful. Don’t worry about it.” Well, no, our child is beautiful. So I just hope that those who don’t know how to deal with this, that you can be sensitive to the parents and how they are feeling in this situation. And there are of course, many feelings going on, but most of us would say our child is already beautiful.

I loved it. When my daughter was born, I wanted to get her pictures made. I mean, what parent doesn’t want to have pictures of their baby, especially the firstborn. You know, we have so many portraits of the firstborn, typically. I didn’t know how the photographer would feel because she took a long time to have her first surgery. And so her first pictures she had the cleft, her lip was still open. The photographer was wonderful. She treated us like she was the most beautiful baby she’d ever seen. She didn’t make a big deal about it. She did such a great job accepting that this is who this child is and what she looks like. And we took beautiful photos of her. So it was wonderful. I loved her attitude.

But anyway, this book Beth and Her Cleft, I don’t like it as well. As far as the text of the book for a child. It’s rhyming and the rhyme is a little slant rhyme. It’s not perfect. It’s not right on. But the medical information in here, the diagrams that are in here are fantastic. So it really does show a child what is going on, what it looks like. And this would be really good for reading to a child who has a cleft as well as for the siblings, but it shows what they do with the surgery, how it looks when they have the stitches, and how the child is fed. And then it deals with when they’re starting school and how they might be shy because they sound different when they talk or something like that. And so I love that it deals with a lot of these different issues that the other books don’t go quite into because they’re just dealing with the infant. This one goes on through the child growing up a little bit more and talks about some of the later surgeries that they might need to have as they’re growing up and a little bit older. And like I said, it also has the foundation Saving Faces Foundation that this doctor has helped start. And it has links for the parents in the back. So it even shows the timeline for cleft surgery. And just to give you an idea as the listener, what you might be looking at as a new parent, I certainly did not know this.

When they’re three to four months old, they have the cleft lip and nasal reconstruction surgery. It’s the first surgery. Sometimes it’s two surgeries and these are usually within less than two hours. It doesn’t take a long time, and they don’t usually have to stay in the hospital for many days afterwards. It’s usually outpatient surgery with my kids. They didn’t have a whole lot of pain after this surgery, but I have other friends in the cleft group on Facebook that their kids have dealt with a lot of pain. So that’s something that’s difficult. 10 to 12 months, they have cleft palate repair. This is where they close the palate, not the hard palate, but the soft palate. They will usually get ear tubes. Now my son had many, many ear tubes because his would not stay in, but this one does require an overnight stay. Usually the surgery’s less than two hours, but the palate repairs a little more involved. And so sometimes they have to stay overnight. And then my kids had craniosynostosis. I think that’s how you say it. Anyway, my son had to have a craniotomy in around that age as well. And then ages seven through nine years, they have the bone graft that helps to bring in the hard palate. And so that happens then, and often with that one beforehand, they have to do braces that stretch the palate, which is not uncommon for any child. If you have had braces some have it where they spread the palate wider, and then they have the braces that straighten the teeth. Well, this is true for many cleft patients as well. And this is also outpatient surgery, less than two hours, and they’ll have a little injury on their hip or wherever they took the bone from to do the bone graft for the palate. And then ages 13 to 15, they will possibly have jaw surgery. This isn’t always needed, but when it is, it’s usually ages 13 to 15, they will probably stay overnight. And the surgery’s less than four or five hours, but it is a little more involved. And sometimes if they’re older, they have to break the jaw sometimes. So that’s a pretty serious thing. And then their final cleft surgery is ages 15 to 17, where they may have some rhinoplasty. They do a nose job to help them to have a more normal looking nose because sometimes one side is a little bigger than the other one. It may be a little flatter than they want. And so our doctor told my children, they could pick their nose when they were were 16, and of course they all went “Ew,” but anyway, it’s an outpatient surgery, three to four hours usually. So this is the typical plan for surgeries for a basic cleft palate/cleft lip. Of course, if there’s other things involved with this syndrome or the birth defect, there will be extra surgeries. My children had–one child had like over six surgeries and he still has not had his bone graft because autism complicated things. And so we’re just now getting to the point where he’s going to have his bone graft surgery, and he’s in his twenties. My daughter had her bone graft when she was young, and she never had any further surgeries. She didn’t want them. And with her autism, they could not do the braces on her teeth because typically autistic children are very sensitive to textures and to things in their mouth. And they can’t tolerate taking care of their teeth a whole lot like with flossing and all that is very difficult for them. So you can’t put braces on if they’re not going to take really good care of their teeth, because they won’t have any teeth to straighten. The braces will cause them to just rot and fall out of their head. We had to decide which way we were going to go, what we were going to do. And the doctors of course would not put braces on teeth if they could not adequately take care of their teeth. We had to wait for our children to mature more in their autism, in their ages, to be ready to take care of their teeth before we could even consider putting braces on. Therefore my children are way behind the schedule. So it depends on the child, but this is the typical plan. The typical way things go. Of course, every year there’s more advances in surgeries and plans and how they do things than when my kids were little.

I want to share one more book with you. It’s called Cleft Talk for Kids by Melissa Johnston-Burnham. She’s a social worker. It’s illustrated by Andrea Fountain. And this is written for your older children up through middle school. And it talks about what it’s like to have a cleft. It talks about speech therapy. But most of all, it talks about how they’re just normal kids who have this extra thing that they’re dealing with, but they still like to ride bikes, like to take ballet. Every child has something that they feel inadequate about or feel embarrassed by, or that makes them feel a little shy. So they put the cleft in perspective in this book, and it’s just very well done. If you want to just read a book that would be good for those kids to have more understanding of someone with a craniofacial difference, it’s an excellent book written for a child like that. All of these books are very interesting and would be very educational, but this one specifically speaks well to the friends as well as the child dealing with the cleft.

September is also Hispanic Heritage Month. And so in our giveaway this month, we are giving away a Spanish book. It’s Llama Llama, Red Pajama in Spanish. And I can try to say it in Spanish, but most of you who speak Spanish would just laugh at my Spanish, but I will try La Llama Llama. Rojo Pijama. I’m guessing is how you say it. But anyway, this wonderful book, if you haven’t read it before, is by Anna Dewdney. It’s a great book, and this is not bilingual. This is Spanish. So if you would like to enter the drawing, you’ll need to comment on the show notes for this episode. Or if you’re in my private Facebook group, you can comment there. Those are the two places where you can comment and let me know you want to be entered in the drawing and this will be drawn at the end of this month.

I also wanted to talk about a really great bilingual book in honor of this month. It’s called What Can You Do with a Paleta? And it is in English and Spanish. And what I love about this book is it shows so much of the Hispanic culture. My great-grandmother was Hispanic. We claim our Hispanic heritage in my family and in my extended family greatly. And we are very proud of that. So I love this. The drawings are very much traditional Hispanic, kind of a look to them and a feel to them. The coloring is very much a part of the Hispanic heritage. It is bilingual. So each page has the English and the Spanish. This is written by Carmen Tefolla and illustrated by Magaly Morales. It’s such a great story. If you don’t know what a paleta is, it’s a Popsicle, it’s a kind of cold, frozen dessert that children enjoy in the summer. It is just the cutest story and introduces children, not only to the culture, but to the paleta what you can do with one. And so they draw pictures, they make a mustache on their face, they turn their tongue blue. So there’s lots of different things that a child can do. Just like we would do with a Popsicle in American culture. This book has won several awards, and it is really cute.

And there is another book that was written before it, that is by the same writer and it’s called What Can You Do with a Rebozo? And this is the shawl that is popular in Hispanic culture. That one is also available by this same writer. But what I love about these books is a lot of times you can find books translated into Spanish or Chinese or some other language, but it’s not about that culture. These books are written in Spanish and English bilingual, or you can get it just in Spanish, and they reveal the culture, the Hispanic culture, the Latin culture. And so that’s why I chose to talk about these two books, because I think it’s really awesome that they reveal a lot about the culture. If you look in the books that are available, there are some that teach numbers or shapes or whatever, some of the vocabulary. They also teach some of the culture as well. And you can also find quite a few, even Dr. Seuss books, translated into Spanish. What I liked about the Llama Llama Red Pajama is they maintain the sing-songy, rhyming, lyrical quality of the original book into the Spanish. So they’ve done a really good job of translating it into Spanish, but also translating the feel of the story into Spanish as well, which is one reason I chose to give away this book in my newsletter this month, I have a devotional that goes along with this book. So whoever wins this book will also get a copy of the devotional in Spanish to go along with it. And if you get my newsletter, of course you have that in English. So it’s a fun book to read with your kids.

Thank you for joining us for “Books that Spark,” a podcast, celebrating books, that spark imagination, emotion, questions, and discussions as we disciple our children and help them follow Christ with their whole hearts. If you would like to connect with me, you can reach me at TerrieHellardBrown.com. That’s also where you can comment on this podcast and be entered in this month’s drawing. I’d love for you to sign up for my mailing list. When you do, you get several free items just for signing up, and you can cancel at any time–you can unsubscribe, if you would like, if it’s not quite what you were expecting, but I try to provide quality material for you. When you first sign up, you get a legacy email. That means it’s an email that goes out just to those who sign up in my mailing list. It is not a blog that you can find anywhere else. It is like blog posts. And I send out about seven emails for seven weeks. You get one a week. That is just an encouragement for you as a mom, to walk with God closer, to grow in your relationship with God. And just some things that really are important points of our growth, in our walk with God. You also get these free items that are geared toward your children, such as phoneme books and ABC books that you can just download and print for your children. There’s also a list of over 100 books that I’ve read and vetted and tried to find to help you out to start your child’s library and to build your child’s library. So these are things you get for being on the mailing list. You also get notified when I post a new podcast or a new blog post. Now each month in my newsletter, we have a book club and a devotional. The book club is geared toward all ages. I have from board book age up through young adult and even a book for parents each month. And we include either a homeschool lesson or a craft to go along with the books, but also discussion questions that can be used with most of the books in the book club list. And this is all free to you for being on my mailing list. So I’m hoping, like I said, that you feel blessed by this. And I would love to hear from you. Please comment, please share, please like our episode. I’m on all the social media, and you can like us on there and let people know we’re here. That’s how podcasts get to be more popular is when people share them and tell others about them. I just want you to know that we truly appreciate you. Thank you for being here.

Your Host: Terrie Hellard-Brown

Terrie Hellard-Brown writes and speaks to help children and adults find God’s purpose and plan for their lives. She teaches workshops and writes devotional books, children’s stories, and Christian education materials.

Her podcast, Books that Spark, reviews children’s books that spark imagination, emotion, questions, and discussion leading to teachable moments with our kids. Her podcast posts each Tuesday morning.

Her blog posts discuss living as a disciple of Christ while parenting our children. She challenges us to step out of our comfort zones to walk by faith in obedience to Christ and to use the nooks and crannies of our lives to disciple our children.

Terrie uses her experiences as a mother of four (three on “the spectrum”), 37 years in ministry (15 in Taiwan), and 32 years teaching to speak to the hearts of readers.

Her motto is “Life doesn’t have to be perfect to be WONDERFUL” and keeps her childlike joy by writing children’s stories, delighting over pink dolphins, and frequently laughing till it hurts.

September Giveaway!

Comment below or in the Private Facebook Group to be entered in the drawing.

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