Take Heart

"Adoption and Invisible Disabilities: Amy's Journey"

• Amy J Brown, Carrie Holt and Sara Clime • Season 3 • Episode 128

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Co-Host Amy J. Brown shares her life and adoption journey in reference to Take Heart hosts’ newly released book, “The Other Side of Special.” She addresses the struggles and challenges that come with being a mother dealing with the invisible disabilities of their children. She shares her journey of adopting children, including one with fetal alcohol syndrome, which led to many emotional and mental difficulties. She shares candidly in the book about her experiences in hopes that it helps other mothers with similar struggles to know that they are not alone and are valued by God.

Ep. 128; May 16, 2023

Key Moments:
[2:06] Amy’s struggle with infertility and adoption decisions
[6:42] Feelings of loneliness
[7:54] When the family doesn’t want to understand
[8:56] Sharing the journey
[9:25] You are not alone in this journey

Resources:
The Other Side of Special

If you enjoyed the show:

Amy J. Brown 
Welcome to Take Heart, where our goal is to offer encouragement, give hope and insight, so you can flourish in your journey as a special needs mom. 

Hi, this is Amy J. Brown, and this month we are celebrating our book, The Other Side of Special: Navigating the Messy, Emotional, Joy-Filled Life of a Special Needs Mom. Last week on the podcast, we shared our hearts for writing the book and also what we've learned from each other. But this week, I wanted to share more about my personal story. I've always loved to hear other people's stories when I was a kid, I love biographies. I could not get enough of these books. I read them over and over. I am fascinated to hear about the lives of others. For as long as I can remember, I have wanted to be a writer. My goal, when I was eight years old, was to be a writer who lived alone in a house on the beach with cats. What eight-year-old wants to be a recluse? Apparently me. God has a sense of humor because I am the mom to six and many more. I have lived with a house full of people for a long time. Reading this book has allowed me to tell part of my story, the story of parenting kids with reactive attachment disorder and fetal alcohol syndrome and children who have been affected by trauma. It has not always been an easy story to tell. As a special needs mom, I have felt judged, misunderstood, and helpless. Still, most of all, I felt incredibly isolated. I knew there must be other moms like me, but I couldn't find them. Where were they? I think they were hiding. I think sometimes, as special needs moms, we hide in everyday life. We do not have anyone who can understand this unique, lonely road we walk. I wrote this book to tell part of my story. It is not a story with solutions. I don't have a how-to or five steps to success. It is not the story of every adoption. But it is the truth. It is my truth. I help other moms, those who feel alone and hidden, can read my words and say me too. I want you to know that you are not alone. 

When we started our adoption journey with high hopes and dreams, I had no idea what was in store for us. We got zero training on trauma and attachment issues. I spent most of my life keeping silent about this story. Over the last several years, I've had a challenging parenting journey. 

Our three adoptions look nothing like the rosy stories you read about online. Raising our children who come with trauma and are dealing with issues has been one of the hardest things I've ever dealt with. It has hollowed me out at times.I have felt hopeless and desperate and at the end of my rope. I have doubted God so many, many times and had dark thoughts I did not think I was capable of having. But let me stop and say this. I do not blame my children for this. They are the victims of trauma, and it's not their fault. I do not intend to catalog or cast their behaviors negatively. The story I am telling you in the book is the story of my experience. We had three biological children when we felt called to adopt. We adopted our first daughter as a baby. We went through all the paperwork. I filled out papers, checking off the boxes of what we were willing to take. I remember weighing the ins and outs of this decision. We rationalized that we were not equipped to be special needs parents. In reality, I didn't want to be a special needs parent. I do not remember what boxes we checked, but I remember saying an absolute no to fetal alcohol syndrome. I had briefly read about fetal alcohol syndrome in nursing school and decided to take a hard pass on that one. You know, the truth of this is none of us know what we can handle or how any illness or disability will play out in our lives or the lives of our children. There was no reported history of alcohol and drug abuse when we adopted our daughter. But that was not the case. Our daughter's behavior continued to escalate as she got older, and it was bewildering to me. I assumed that if I loved her well and provided her with a good home, she would be okay. I felt a lot of shame at her behavior. I kept assuming I was doing something wrong. We got the diagnosis of fetal alcohol syndrome, and eventually, we learned that she had reactive attachment disorder or RAD. I remember the day that I realized she wasn't attached to me. My daughter was having a medical procedure, and she was crying. And the nurse said, "Pick her up and hold her like she likes to be held, Mom." I realized at that moment that I did not know how my daughter liked to be held. Once again, I assumed it was my fault. Other times, I noticed this lack of attachment to me. My daughter would run up to a stranger and melt into their arms but hold herself away from me. Not knowing how she liked to be held or why she was pushing me away, only made me think that it was my fault. I did not know that children can have attachment issues from birth. Kids with attachment issues often act out and defy the nurturing caregiver, which is usually the mom. As we continued to parent our daughter, we adopted two other children, another daughter and a son, from a Bulgarian orphanage. Our son has physical disabilities. Still, the most significant issue is the 10 years he lived in an institution without his parent. He had several surgeries as a young child, all without parents. Thinking of that little boy alone in a hospital breaks my heart. This lack of parents has caused him to act out in negative ways and have no attachment to us. 


If you're an adoptive mom, I would like to say that adoption can be challenging. This is not a message I was given. I assumed I would love well, and all would be okay. You may be the most organized person, a good mom, patient kind all of those are good things, but those attributes may not matter one bit. Adoptive kids come with a loss, whether that child is a teenager from an orphanage, or a sweet, shiny newborn, you're holding within minutes of her birth. They all have a loss. We do our children and ourselves a disservice if we ignore that loss. If your adoption story is complicated, like mine, do not think that adoption was a bad idea. We still grow in the midst of the hard. I still fully believe that love can change anything. Though it may not change everything, it will certainly change you. You may feel a little confused because you feel like you're doing what God called you to do, and it didn't turn out how you expected. When it doesn't turn out as you thought, that's okay. There's grace and beauty and life, even amid the heart. This is your life; whatever it brings, God will give you the grace to handle it. It may feel like you weren't handling it. But guess what? You don't have to do it all. You cannot do it all; it's impossible. Parenting children that come from trauma is difficult. I want you to know, and the reason I wrote the book is to know that you are seen. It is easy to hide as special needs moms of kids who have invisible disabilities. All the world sees is behavior, and they make their judgments on that. The pastor and your friends may not see past your mask of competency to the hurt and overwhelm underneath. Your child's teacher or your neighbor may not be able to look past your child's behavior to know the child that you love. But God sees. He truly does. He sees how hard it is and how discouraging it can be to see another adoptive child thriving or the lives of other that seems so easy compared to yours. God sees when you think: can we make it to bedtime without violence? He sees on the drive home when you think: Do I have to go home and do this again? God sees all the moms whose child has lost it in public, been picked up by the police, or hurt another child. God sits with you as you fill out paperwork for the psych ward again. I see you too. There are other moms out there that are walking this road. 

I also want you to realize that you are known. It is so essential to feel like we are understood and known. I hope this book helps you feel this way. My husband and I struggled with years of infertility. For those of you who have walked this road, you know how difficult it can be. When we were struggling, I found a book that expressed the pain of being infertile. I wanted our families to read it so that they would understand. I also wanted them to stop giving us painful and insensitive advice on how to get pregnant. Just a side note. My husband's grandmother handed me an article from a gossip magazine that proclaimed by eating Pez candy, (You know, Pez candy? It's the little candy that goes inside the Pez dispenser, and the dispenser maybe has the head of Yoda) that if you ate Pez candy, you could get pregnant. That's just a little side note. Let me tell you, that doesn't work. Anyway, I gave the book to some members of my family, and some read it, and that was helpful, but others were too busy, which was hurtful. 

I wanted those I love to understand what I was going through. This book, The Other Side of Special, is one you can hand to others in your life. They can get a glimpse of the emotions that come with this journey. This book may be a bridge for you, and if nothing else, I want you to feel known on the pages of this book. There are some moms of kids with invisible disabilities that have said to me, "I don't feel like I belong in this community because their children don't have physical issues." But hear this, you belong here, and you are known. 

I also wrote this book to remind you that you're not alone. I've walked this road for so long, and I did not know one person who understood. I have a son who is deaf. Years ago, I visited a school with a classroom for children that are deaf and hard of hearing. A woman gave me the tour, and we discussed whether this would meet my son's needs. This woman was also the director of special needs. While I was sitting in her office, I opened up about her daughter's reactive attachment disorder, fetal alcohol syndrome, and her behavior. Now I did so with trepidation because I have sat in other offices with teachers and principals and walked away feeling misunderstood and judged. I stumbled over my words and told the truth about what was happening in our home. I have no idea why. I guess I wanted to know if she knew of a school that would help my daughter. This kind woman shared her story with me. She had a daughter just like mine. I'm not a public crier, but I put my head on her desk and cried my eyes out. Why? Because for the first time, I did not feel alone. Did she have solutions for the perfect school for my child? Nope. I walked away, knowing I could do that one more day because I was not alone. Hear this. You are not alone. Please know that you are amazing. You're doing your best with the life that has been given to you. Please know you will feel all kinds of emotions. That's okay too. Put down your idea of What a good mom is and be the mom you are. You are the mom of your child, and you're not alone. I'm here walking with you. 

Thank you so much for joining me today. As I said at the top of the episode, I love to hear other people's stories, and I would love to hear yours. When we honestly share our stories, we learn from each other, gather strength and come away encouraged. More importantly, we feel less alone. Your story is important. If you'd like to share your story with me, you can email me at amy@amyjbrown.com. I will put that in the show notes, or you can reach out to me through Instagram @takeheartspecialmoms or on our website: www.takeheartspecialmoms. I wish more than anything that I could sit across from you and grab your hand and say walk with me you're not alone. Writing this book is a way that I can do that. It is essential to remember that although we have very unique lives, other moms share our emotions. The situation may look different. Still, we are all on this journey together, experiencing the messy, emotional, and joy-filled life of special needs parents. I hope that this book will encourage you. 

All of our resources, including an entire written transcript of this episode, is available on our website at www.take heartspecialmoms.com. There are also links to anything we mention in this episode's show notes. Thank you for joining us today.