A Different Kind of Strength: Emily Wolf on Autism, Faith, & Embracing Uniqueness

In this episode of This Ability Podcast, Mary sits down with Acadiana mother, author, and advocate Emily Wolf to talk about her journey raising her son Seth, who lives with autism and congenital muscular myopathy (RYR1). Emily shares what daily life looks like for their family, the challenges and emotional “dark moments” that many special needs parents face, and the powerful joy that can come from embracing a child’s individuality. Through honesty and reflection, Emily discusses the lessons Seth has taught her about confidence, authenticity, and seeing differences as strengths rather than limitations. 

Emily also shares the story behind the children’s book she co-created with Seth, A Different Kind of Sea Star, a whimsical underwater tale designed to help children understand that being different is something to celebrate. She reflects on the role faith plays in her parenting, her work with the JoyHeart Collection, and her mission to encourage and uplift other families in the special needs community. This conversation is filled with encouragement, reminding listeners that every child—and every family—has a unique story worth embracing.

Transcript

Mary Baudoin (00:07):

Thank you everyone for joining us today for This Ability Podcast. I'm your host and producer, Mary Baudoin. And today our guest is Emily Wolf, a mother, author, and advocate in Acadiana. Emily, thank you so much for being here today.

Emily Wolf (00:19):

Thank you for having me.

Mary Baudoin (00:19):

Great to see you. Absolutely. Tell our audience a little bit about yourself.

Emily Wolf (00:23):

I've lived in Lafayette my entire life, all 40 years of it. And I have been married to my best friend, Matt, for 18 years. And we have one son, Seth, who is 17 years old.

Mary Baudoin (00:32):

He was diagnosed with autism, correct?

Emily Wolf (00:35):

He was diagnosed with autism at the age of two.

Mary Baudoin (00:38):

And he also has congenital muscular myopathy. Is that correct? Tell our audience a little bit about that. What is that?

Emily Wolf (00:45):

So his myopathy is a lot like autism in the way that it's a huge range of severity of symptoms. So luckily he's on the milder end.

Mary Baudoin (00:53):

Okay.

Emily Wolf (00:54):

The RYR1 gene has a protein for muscle function. So when you have mutations in that gene, it disrupts the normal function, which affects your muscle strength. So he has a lot of fatigue and weakness and reduced stamina. He has heat intolerance and also some musculoskeletal issues, scoliosis, chest wall issues, and gait issues, sleep apnea. The biggest thing with that is that he needs a lot of rest and a lot of sleep.

Mary Baudoin (01:19):

Can working out help him develop his muscle tone or is that something that's not really recommended?

Emily Wolf (01:26):

We don't really know. In the early years, physical therapy wore him out more, wasn't worth it. But now that he's going through puberty, we feel like he is gaining some muscle strength.

Mary Baudoin (01:37):

What are some of the challenges that have faced you or are facing you as a special needs parent?

Emily Wolf (01:43):

In the beginning, it was hard because when he was diagnosed, I didn't even know what sensory integration disorder was. So he always had issues since birth with low muscle tone, eating, feeding issues, which we brought him to speech therapy when he was seven months old because he couldn't transition to baby food. And that's when she said sensory integration disorder. And I was like, "What is that?"

Mary Baudoin (02:04):

Right.

Emily Wolf (02:04):

So started researching and it all made sense for so many of the things that we had been dealing with.

Mary Baudoin (02:10):

So was it the texture of the food that he-

Emily Wolf (02:12):

Texture. He preferred one bottle over all the rest. Very funny even as a baby about routine, like me holding him. Very sensitive to noise. If I could finally get him to sleep and I would just set a cup down on the table, it would wake him up. So I think it was a steep learning curve for everyone, but I would say the hardest part in the early years was the isolation. And if I wouldn't have found a Facebook group, then it would've been really lonely. Finding a community of other people who were in it too.

Mary Baudoin (02:40):

I'm glad you mentioned that because when Lexi was diagnosed with lissencephaly, this was in 1997, but the internet was actually just coming about. And I found things like the National Rare Organization Disease website, but Facebook was not around at that time. And now we have a lissencephaly group and I'm very grateful for it because I can meet other parents across the world. So although social media does have some negative connotations with it, I think there are some good things and those specific Facebook groups for parents or people that have certain diagnosis, it can be a huge help.

Emily Wolf (03:16):

It was life changing. And then you could ask questions, learn things.

Mary Baudoin (03:20):

Right.

Emily Wolf (03:20):

I felt like that was a lifeline.

Mary Baudoin (03:22):

Right. Whenever you mentioned eating, was the discussion of getting a feeding tube ever brought up or no, that was not something to consider?

Emily Wolf (03:30):

It was at one point just because he was so tiny.

Mary Baudoin (03:33):

Right. I was wondering about his nutrition. Was he getting enough calories a day and things like that?

Emily Wolf (03:38):

Luckily ... We did OT. We went to Pediatric Therapy TLC. He was practically raised there. Feeding therapy there. And now it's funny because he's still so tiny, but he eats so much.

Mary Baudoin (03:51):

He's thin but he's tall. You wrote about ... And we'll talk about your writing in a few minutes, but you wrote about dark moments in parenting. How did you work through those moments? How did you find the light at the end of the tunnel, so to speak?

Emily Wolf (04:03):

So I think the darkest moments in the early years were ... Well, my husband is a pilot, so he's away from home a lot. So I became Seth's 24/7 routine. And even when Matt was home, he still wanted me because that was his routine. And there were days where I couldn't console him. He was hurting himself. We couldn't even go outside. So it was like even going to get fresh air for a few minutes seemed impossible. So it was overwhelming. But the blessing in all of it was as Seth got a little bit older and could communicate a little bit more, he started looking and he would notice every little heart shape or every cross around. It could be a crumb or a shadow. He'd be like, "Oh, heart, a cross." So we held onto that. We found ... We call them heavenly love notes. So we started finding them everywhere. So you could have the darkest day and then see a little heart shape and then I would feel like, "Okay. It's going to be okay."

Mary Baudoin (04:58):

So those little things that can make a big impact like, "Hey, don't give up."

Emily Wolf (05:01):

Yeah. It was a perspective shifter. Even just for a second to take your mind off of the overwhelm and be like, "Okay. God is here." And I always felt like he was reminding me, do what you can right where you are one step at a time with what you have. So it was just taking me back to the present and findings and peace.

Mary Baudoin (05:22):

You mentioned earlier about Facebook groups. What other resources, communities, organizations have been especially helpful to you and Seth and anyone else in your family? Is there a group here in Lafayette that's helped or Acadiana?

Emily Wolf (05:37):

Yeah. So Seth went to Christian homeschool in Milton for many years. Age four to 16, I think. And they became like family to us and accepted Seth for who he is and where he was, helped me as well. And then more recently, the last few years, Red Oaks Coping. That my friend Stephanie had started, that changed everything. Seth found a place where kids were like him and they could just relax around each other.

Mary Baudoin (06:03):

It wasn't a super rigid school structure and-

Emily Wolf (06:07):

Yeah. It was a hangout group. And he still does his hangout group. He has it tonight and he's so excited about it. But those kids, they're so deserving of community and friendship and belonging that has been life changing for both of us.

Mary Baudoin (06:20):

And they can probably learn from each other too and parents as well, I would imagine.

Emily Wolf (06:25):

Encourage each other. Yeah. The parents have their own little hangout group for pick up and drop off.

Mary Baudoin (06:29):

I bet.

Emily Wolf (06:30):

It's nice.

Mary Baudoin (06:30):

That's a good thing. That's a good thing. And I remember reading a few years ago that you had written a blog and you talk about wishing that you heard be yourself more growing up. What does that mean to you? How has that shaped the way that you parent Seth?

Emily Wolf (06:45):

Yeah. That has stuck with me. I have never wanted Seth to feel like he was less than. And I always tried to celebrate every positive thing, any chance I got for him because I never wanted him to feel like he couldn't be uniquely himself. And he's celebrated for that. And he made it really easy because even from a young age, he would sing this little song, Jesus made me. And it was so simple, but it was so impactful because it's like he knew that he was made on purpose with a purpose. And he struggles from time to time, but he really has a confidence in himself that I wish I had.

Mary Baudoin (07:19):

I understand.

Emily Wolf (07:20):

It's all a gift.

Mary Baudoin (07:21):

Absolutely. You mentioned that Seth has always been unapologetically himself. What do you think helps him to hold onto that confidence?

Emily Wolf (07:30):

He's always been that way and he makes me laugh because he just makes no apologies and he does not care. I don't care if people like me. This is who I am.

Mary Baudoin (07:36):

So what's his personality like?

Emily Wolf (07:38):

Very compassionate, very loving, encouraging, kind, and he has a really calm, sweet spirit.

Mary Baudoin (07:45):

Now you mentioned meltdowns. What triggers a meltdown?

Emily Wolf (07:49):

We've come a long way over the years with his meltdowns. We've learned a lot about sensory diets and how much that affects things.

Mary Baudoin (07:56):

If it's not prepared the right way or a certain texture?

Emily Wolf (07:59):

No. Not food. Just sensory diet. If he hasn't had enough input that day or too much overwhelm, too much stimulation. His rest is a big thing. He needs to be well rested, which I guess that goes for all of us because when we're tired, we're on edge too.

Mary Baudoin (08:14):

Yeah. Same. Completely.

Emily Wolf (08:17):

But when he was younger, it was more self-injury, which was to me the hardest thing as a parent. But thankfully he's come really far with that.

Mary Baudoin (08:27):

That's got to be scary. Yeah. That had to be a little scary, right?

Emily Wolf (08:29):

Very scary.

Mary Baudoin (08:29):

Yeah.

Emily Wolf (08:31):

But that was from the time before he was even one and his little head. He still has a dent in his head. But that's the most heartbreaking thing I think as a parent to watch your child hurt themselves and you can't help them. But thankfully, Seth is 17 now. He's come a really long way in a lot of areas.

Mary Baudoin (08:49):

You said that Seth has changed the way that you view your own uniqueness. Why is that or how is that?

Emily Wolf (08:56):

Watching him and his friends just be free in who they are. It is really inspiring. And I've always been super self-conscious and self-critical. He set me free in a lot of ways. Still working on it, but letting go of comparison and insecurities and trying to be proud of who I am.

Mary Baudoin (09:13):

So what qualities would you say that you would like Seth to pass on to other people? Or what would be your wish to everyone that they could learn something from Seth?

Emily Wolf (09:23):

The thing that Seth has taught me the most is that success in life has nothing to do with what you're capable of, everything to do with your faith and your love. It's like rewriting the script on "success." And we always talk about how we wish we could change the world's view of success to not be based solely on accolades or job titles or things like that, but more based on the compassion you share with those around you. Like him just being himself and shining his little light, that's success.

Mary Baudoin (09:52):

And speaking of a different kind of person, he's a different kind of sea star, right?

Emily Wolf (09:57):

Our little book.

Mary Baudoin (09:57):

Yes. Let's talk about your book. What inspired you to write A Different kind of Sea Star?

Emily Wolf (10:02):

So it's funny because we just, I don't know, made it up one day. But the whole book is basically based off of Seth. And one day he was swimming and he popped up under the water and he said, "I need to wear my sunglasses under here because it's still bright." Because his eyes have always been super sensitive to light. He's always got his sunglasses with him.

Mary Baudoin (10:19):

Even underwater. Okay.

Emily Wolf (10:19):

Yeah. So it just made me laugh.

Mary Baudoin (10:22):

Yeah.

Emily Wolf (10:23):

And then it just spiraled from there. And Seth imagined what he wanted the character to look like and what it would be and how it would have rainbow fins. All the parts of the book are things that Seth likes to do, time with his friends, hide and seek, picking up trash, and then finding the heart shapes.

Mary Baudoin (10:38):

Right. I love the book, by the way. For those of you listening, I read it to Lexi and she loved the book. The child was so attuned to me reading it and was looking around. She was looking at the pages because it's beautifully illustrated. It's not too bright, but the colors are beautiful. And I love the images of the sea star wearing the sunglasses. It's so cute.

Emily Wolf (11:02):

Thank you.

Mary Baudoin (11:02):

And I think, you got to embrace the uniqueness.

Emily Wolf (11:06):

Embrace it and be happy and proud.

Mary Baudoin (11:08):

Does he have any aspirations to write a book?

Emily Wolf (11:10):

Seth has a lot of big, huge dreams.

Mary Baudoin (11:13):

He does?

Emily Wolf (11:13):

Yes.

Mary Baudoin (11:14):

Okay. What are they?

Emily Wolf (11:15):

So one of them is he wants to build his own children's hospitals and he has so many good ideas because he doesn't like the way the hospital systems are.

Mary Baudoin (11:24):

I don't either.

Emily Wolf (11:24):

He's like, "Doesn't work."

Mary Baudoin (11:26):

No. It doesn't.

Emily Wolf (11:26):

Have his own school one day because he sees the things that need help in the school system too.

Mary Baudoin (11:31):

I would agree with that.

Emily Wolf (11:33):

He has ... Yeah. A lot of dreams.

Mary Baudoin (11:34):

A lot of dreams.

Emily Wolf (11:35):

And I love it.

Mary Baudoin (11:37):

I do too.

Emily Wolf (11:38):

He does have a YouTube channel that he loves. He does RCs.

Mary Baudoin (11:42):

Okay. Oh, remote control.

Emily Wolf (11:43):

Remote control.

Mary Baudoin (11:44):

Sounds like my husband.

Emily Wolf (11:46):

They would get along.

Mary Baudoin (11:47):

Oh, absolutely. Yeah. My husband is 50, but he's a child at heart for sure.

Emily Wolf (11:52):

Well, I'm sure he goes to Big Boy Toys.

Mary Baudoin (11:53):

Oh, he does.

Emily Wolf (11:54):

That's Seth's favorite story.

Mary Baudoin (11:54):

That's a big thing. Yeah. Yeah. Do you have any plans to write another book in the future?

Emily Wolf (12:00):

We actually do. We have a whole nother book written and illustrated.

Mary Baudoin (12:04):

Oh, fun. Already. Wow.

Emily Wolf (12:06):

Yeah. I worked on it the last few years, but we just haven't done anything with it yet.

Mary Baudoin (12:10):

So maybe it'll be released next year possibly.

Emily Wolf (12:13):

Hopefully.

Mary Baudoin (12:14):

We'll see. Okay. Okay. I hope it does. I hope it does because A Different Kind of Sea Star is such a great book and it'd be great to have a part two or just continue to read a different type of journey, but you're a great writer.

Emily Wolf (12:25):

Thank you.

Mary Baudoin (12:26):

And the illustrations were beautiful. Is it the same illustrator?

Emily Wolf (12:28):

I did it.

Mary Baudoin (12:29):

Oh, you did it yourself. Wow.

Emily Wolf (12:30):

Yeah. I did the-

Mary Baudoin (12:31):

That is awesome. All right. Let's talk about the Joy Heart Collection and ministry through art. And I love your t-shirt, by the way. She's got a navy blue shirt on with the rainbow and some hearts and a butterfly. Lexi. I don't know if Lexi already has that shirt or not. She's got something similar, but it's really cute. So tell us how you and Jada. And for those of you not familiar with Jada, we did interview her in season one about this collection and her family and her son. But tell us how that came about.

Emily Wolf (13:01):

Well, first of all, Jada is like my sister. And I always say that God's love for me is shown in the way that he wrote our friendship because I'm not sure how I ever lived without her because she gets life in every way, the special needs aspect. And her husband is also a pilot, so having a husband who's away from home a lot. And then we shared a love of creating and our faith. So we started making art together as our therapy and our decompressed time and our self-care. And it was really healing for us. And then one day we were having coffee and we just felt like maybe we could create something to share God's word and truth and art. So we invite other people to share their art as well in the collective. And we just hope it grows into a community of sharing God's blessings and supporting one another.

Mary Baudoin (13:45):

Right. And you call it your praise song to God. What does that mean? Can you tell our audience a little bit more about what that is like?

Emily Wolf (13:54):

Our collective is all for his glory to share his goodness. He is our light and we just want to try our best to share that with others. So just trying to be a light in the world. And we fall short. We are the first ones to admit that we do not have it together. We get together and we try to talk and we laugh because we can't even string a sentence.

Mary Baudoin (14:12):

Oh, that's okay.

Emily Wolf (14:13):

Because we're so scatterbrained all the time.

Mary Baudoin (14:15):

Hey.

Emily Wolf (14:16):

And we have our good days and our bad days, but we just want to remind people that we all struggle, but we don't walk alone.

Mary Baudoin (14:23):

Yeah. No. That's a great sentiment because when you're a special needs parent, there are multiple things to take care of. It's almost like adulting times 10 because there's so many different aspects of parenting that you have to take care of. And then I find because I'm 50, when you get to be around the middle ages, literally you not only have to worry about your children, but if you have elderly parents, that can be a delicate balance as well. Both of my parents are deceased, but when parent starts to get Alzheimer's or sickly, then you have to juggle both. And it's not easy to do. And then if you have a job and then your own health to take care of, that can definitely be a lot.

Emily Wolf (15:09):

And then like you said, even with the middle aged, you get more fatigue.

Mary Baudoin (15:14):

Oh, yeah. Yeah.

Emily Wolf (15:16):

Over the years, you just get more tired. But yeah, the brain fog is real.

Mary Baudoin (15:20):

Yeah. So how does someone shop your collection? It's on Etsy, right?

Emily Wolf (15:24):

We're on Facebook and Instagram. Not only our products, just scripture and encouraging things and part of our stories.

Mary Baudoin (15:30):

You often remind Seth that God does not make mistakes. What does that belief mean to you and what do you think that means to him?

Emily Wolf (15:37):

As we grew deeper in our faith, we just realized I think parenting Seth helped me grow deeper in my faith and dive more into scripture and the Bible. And then I was able to learn more about God's character and realizing that he is perfect and he is all powerful and he is all knowing and he created us for a purpose. He knit us together in our mother's wombs. All of our days were written before one came to be. And trusting in that and our stories just helped me realize that he's incapable of making a mistake. So however we are and wherever we are in life.

Mary Baudoin (16:09):

How has your faith helped you through the ups and downs of parenting?

Emily Wolf (16:13):

I don't think I would be here without my faith. Faith has been everything to us. We've had major wins and deep defeats, but he is our reason to rejoice and be glad in each day. And I still struggle with anxiety and scars from stresses that we have faced in the past surrendering and leaning on him changed everything. And I truly feel like if we didn't have faith, I'm not sure where we would be because it is our hope and our peace and our strength.

Mary Baudoin (16:39):

Does Seth enjoy going to church?

Emily Wolf (16:41):

So that's something funny because before I was in Bible study and I taught Sunday school and I did vacation Bible school and Seth has never liked church. It's always been too crowded and too loud. And we tried everything in the past. We even sat out in the hall. They put us in a separate room with a TV that ... We really tried to be part of church for the longest time, but I was so worried because I wanted Seth to grow up in church. I was so excited about that.

Mary Baudoin (17:05):

Right.

Emily Wolf (17:05):

And he's never really been to church.

Mary Baudoin (17:07):

Right. So it doesn't have to be a physical place. It's more like a state of mind.

Emily Wolf (17:11):

Yeah. It's like God has been by our side and it's been so evident and clear and Seth has such a good relationship with God, even not going to church, that it just puts my heart at ease.

Mary Baudoin (17:21):

That's good though.

Emily Wolf (17:22):

I do hope we can't get back to church.

Mary Baudoin (17:24):

Yeah. Maybe one day. Just try it. Check it out. If it's not working, leave.

Emily Wolf (17:27):

If I've learned anything, it's that our kids will surprise us.

Mary Baudoin (17:30):

Oh, all the time. 24/7

Emily Wolf (17:32):

I never give up on one thing. Right.

Mary Baudoin (17:34):

What advice would you give to parents who are struggling to accept their children's diagnosis?

Emily Wolf (17:39):

I feel like it's going to be a journey for the rest of time. And some days you're going to do really great with accepting, and then some days you're going to be mad or have grief about it. And I think that's totally normal. The best advice I was ever given in Seth's early years was to meet him right where he was. And they said, stop trying to force him into your world and step in and join his. And so literally that day, I went and sat ... He was looking out the front window just watching cars go by. And I just went and sat next to him and we watched the cars go by together and it was like no therapy goal, no pushing anything, no pressure. And the more that I did that, it was like a shift happened and I was able to accept and learn and grow. And we did that together and also knowledge. I think if you don't ... I don't know. I feel like I've read every book ever made to try and understand, but I feel like the more that you can understand, the more that helps you accept too.

Mary Baudoin (18:37):

Very good advice.

Emily Wolf (18:39):

And support groups. I'll say that again. Even if you can't leave the house that you know you're not alone and that helps you accept too, because sometimes you do feel very isolated.

Mary Baudoin (18:47):

Go back to the book. What do you hope that children and their parents take away from the book?

Emily Wolf (18:52):

So the character is different, but he's happy.

Mary Baudoin (18:54):

Yeah.

Emily Wolf (18:55):

And that's why we repeated so many times. He's a happy little sea star.

Mary Baudoin (18:59):

That's right.

Emily Wolf (18:59):

Because he's just being himself and sharing that. And we just hope that it inspires other people to shine as God has made them, to celebrate their uniqueness, to know that they were created on purpose and for a purpose.

Mary Baudoin (19:12):

Well, I know that we love the book and I know that Lexi, if she could speak, she would tell you that she loved it. But have you gotten any other feedback from parents that have read it to their children?

Emily Wolf (19:22):

We've gotten some good feedback and it really just makes us happy. Made it just for ourselves, to be honest, because we loved it and it was just a celebration. Really happy when we get to see other people. We had written on construction paper, a story literally just about celebrating who we are. And Seth drew these pictures and it was the sweetest little book. So I think having that that we had already written, and then when he said that, it just sparked-

Mary Baudoin (19:49):

It just all came together.

Emily Wolf (19:51):

And we loved the sea and the ocean. He thought of all the little characters and we drew them together and it means a lot to Seth to share it and he really wants to inspire other people.

Mary Baudoin (20:02):

Well, our listeners, if they could remember just one message from this conversation, what would you want it to be?

Emily Wolf (20:08):

The biggest thing that I would want people to remember is that God is love because I feel like that is everything and our relationship with him is peace regardless of your circumstance.

Mary Baudoin (20:19):

Yeah. Emily, it's been a pleasure to interview you. Thank you again for being here on This Ability Podcast. Thank you audience for tuning in and listening to our episode.