Heidi Rome: How Her Son With High-Need Autism Taught Her To Love
We all know the phrase “we make plans and God laughs.” How many times in our lives have we had a plan or a path that got blocked, changed, or had to be shifted? When this happens, we have a choice to make. We can continue struggling and trying to fix the problem endlessly, or surrender, give love and light to the situation, and create a new normal. Heidi Rome has experienced this in her life first hand. When her autistic son was eleven, he participated in guided communication therapy in which he described via typing his own experience of autism as a spiritual journey. “God is in my heart and will always protect me.” This encounter soothed Heidi’s oil and transformed her attitude out of a suffering state and a more peaceful purpose. The book’s title is from the last line of that conversation and conveys a simple and not always easy golden rule for all parents who struggle in the face of their children’s challenges, special needs or not. In this episode, along with Heidi, we meet Debby, the mom of a child with Angelman’s syndrome. Also nonverbal, we will hear about Debby’s experience communicating with her son and his profound positive effect on others.
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Heidi Rome: How Her Son With High-Need Autism Taught Her To Love
Facing Life’s Challenges And Shifting Your Perspective To Love
Heidi Rome is an autism mom, mentor, and the Founder of Moms Spectrum Oasis, LLC. In May 2020, she launched her book, You Just Have to Love Me: Mothering Instructions From My Autistic Child. It hit number one new release bestseller status in the parenting children with disabilities, disability parenting, and special needs categories on Amazon during the pre-order period. Heidi has been featured in The Huffington Post, Princeton Community Television, West Essex Tribune, AM 970 The Answer, iHeartRadio, 24×7 Magazine, NJ Kids on the Go/Special Needs Guide, and other media.
Whether speaking, consulting privately, teaching courses, leading groups, holding retreats, facilitating circles, or leading staff/employee autism motivational training, Heidi’s key message is to take a breath and breathe. It’s for struggling moms who are focused on being a good parent and doing their best for their special child that they neglect their own self-care, a decision with severe consequences for each member of the family. Heidi shows overwhelmed parents how to choose a happier, more empowering path towards the family’s wellbeing.Each of us is entitled as a birthright to express ourselves. Click To Tweet
The most important thing you can provide for your child is a calm parent with a healthy, balanced perspective, rested, nourished and, ready to face the countless decisions on how to best raise your differently wired child. To get to that place of peace and balance, you’re going to need a community around you. Like-minded parents with similar journeys and perspectives who care about you, want to support you, and can guide and encourage you as you go.
“Man plans and God laughs.” We know this saying. It’s a Yiddish proverb. Has your life played out exactly as you always thought it would? Was there ever a sudden detour where you didn’t get the job you were positive you’d get? Was there ever a betrayal or breakup or divorce from the person you swore was your soulmate or closest friend, or an accident or a medical condition that added a physical path or disability to everyday activities? Was there ever a child’s diagnosis that refocused your attention priorities and worldview like a gunshot wound to your heart? Whatever it is, fill in your own shock or trauma.
“Who changed the script on me? What movie am I in?” If anything has ever happened to you that was not part of your original script for your dream life, you may want to get to know Heidi Rome talk about handling life’s edits. When it looked like God was backing out of the detailed contract she had carefully constructed since early childhood, she was not happy. Truth be told, she was beyond angry, disappointed, and afraid. What would the future look like without that blueprint? What if working harder or working smarter wasn’t turning up the solutions to fix the problem? What if Miss Type A couldn’t control the plot change and couldn’t figure out what to do?We can only change ourselves and need to let go of fixing others. Click To Tweet
Fear was driving the bus of her life erratically at 100 miles an hour. Any surprise that Heidi became depressed waiting for an inevitable horrible crash? Heidi will share her story with us and describe how it was the wise encouraging messages from her autistic nonverbal son that shifted her heart, mind, and attitude. Thanks to this key counsel, Heidi now navigates and lives a life of purpose and joy instead of suffering and guiding others to face hard things with courage and effectiveness.
Heidi Rome, MBA is an autism mom coach, Founder of Moms Spectrum Oasis, LLC, and author of You Just Have to Love Me: Mothering Instructions From My Autistic Child. She encourages struggling parents, showing them how to stay strong and take life’s journey back on the challenging autism journey with their kids.
We are glad you chose to be here with us. I’m wondering if you woke up this morning on the right side of the bed. I woke up on the wrong side of the bed because everything seemed to go wrong. You have your day planned out and you have your routine and your schedule and that makes you feel good because you know you can control what’s going on in your day. Sometimes, things get out of control. I lost my phone. Let me do full disclosure, it fell in the toilet. That happened to me. I’m wondering if it happened to you, too. It fell out, got wet, done. I came away with my husband and I’m having so much trouble here because the internet went out and there was a storm. I had to scramble and figure out how am I going to make this work.
What happened was I called on my featured goddesses that I didn’t even recognize their phone numbers, which goes to show you with technology, we’re connecting the numbers with the names, but they helped me. It’s nice to have this support system of help that they will step in at any moment. That’s what we need in our life. When we feel out of control, we need support. We need people to help us to get through these situations and also surrender. I feel like I needed to surrender and see what happens. I know it’ll work out the way it’s supposed to be.
Our guest, Heidi Rome, knows a lot about change, unexpected, and having your plan and your plot to your story and a changing course. She’s here with us to talk with us all about this and more. Welcome, Heidi, to the show. I’m glad you’re here because I have so much to learn from you. We all do. You’ve been through so much in your life. I want to jump right in about your son and the wonderful message that he gave to you. Can you talk to us about that please? Can you start right with that? I know that shifted your perspective. That’s that surrendering that you had into the control.
It’s a great place to begin because for me, that was the transforming opportunity to move out of that place of, “I have to fix this. Something is wrong. There’s something wrong with the situation. There’s something wrong with me. I can’t fix it.” In my transformation out of that place, I was already on the path but was still in a lot of pain. That moment of my son’s message was, for me, the fork in the road to choose joy again in life or stay rooted in the past and pain. That conversation took place. My son has high-need autism or severe autism. He is minimally verbal, virtually nonverbal, and has challenging behaviors that had escalated. He had become a danger to himself, to us, and other people around him because he would lose control of his body and lash out.
We had to make the difficult decision for him to move to a residential school, a placement for kids with autism out of state. That was a hard time and a hard decision. We knew it was the right thing but I was still in a lot of pain. He had been at more than one school in our desperate attempt to address autism. The school that he was at was a beautiful place and focused on his developmental needs and the relationship with him. One of the things they stress at that school was the importance of communication as a human right. Each of us is entitled as a birthright to be able to express ourselves and not every approach in the autism world addresses that but thankfully, this school did.
They offered facilitated communication, which goes by different names like supported typing and spelling to communicate. What it does is through support, it lets the typer communicate thoughts that have been locked within. It’s controversial because there’s some touch involved and people are saying it’s not the person typing, but I won’t go into it. We had tested it and confirmed through things that no one else would know except my son. We knew that he was the one typing and we knew that this was an amazing technique, though controversial and not done everywhere.When you come from love, not fear, there are no mistakes. Click To Tweet
We knew that when he was going to leave to go to this residential school, this technique was not going to be offered anymore. We would lose the ability to type with him and let him communicate this way. He won’t type with me because as he typed, “Mom, you’re too tense.” I hope the other moms reading this will be like, “That sounds like my kid.” It’s like, “Mom, go away. Leave me alone.” I knew that I was going to be losing this opportunity to type with him so I wanted to go in extra time.
I went in this particular time about three weeks before I knew he would be going and I said, “I know that you enjoy going to synagogue at the special needs service I never asked you what are your thoughts about God.” This was the conversation then with me verbally asking my questions and my son typing his responses with the teacher in front of me there. He said, “God is in my heart and he will always protect me.” Karen, you could have knocked me over.
Did he physically type it?
Yes. He was hitting the keys on the keyboard. I said, “Did He tell you that?” “When I lived in heaven, He told me that.” “Do you remember that time?” “When I lived with God, I wasn’t named Ethan yet.” “What was your name?” “I was not to remember it. I had many before.” “Do you remember anything from that time?” At that point, my son said verbally, “No, thank you.” He typed, “We should talk about it when nobody is here.” Lisa, the teacher, said to him, “Ethan, who should leave? Should mom leave?” He verbally said no, so I said to him, “Should Lisa leave?” He verbally said no.
There was one more person in the room, Kyle. Because of my son’s severe behaviors, we had to have a strong young man with us all the time to keep everyone safe. Kyle was a sweetheart, but he was skeptical about the typing and my son felt that. I said, “Should Kyle leave?” My son said a word that’s hard for him to say. He said yes. No is easy. Yes is hard. Kyle left the room and my son continued to type. “I remember life with no body. When you go to heaven, there are no bodies. Just spectacular energy.” “Did you choose to come here as Ethan Rome?” “Yes. I picked to be me and have many challenges.” “Did you pick us as your family?” “We were family before. We didn’t live here. We lived in a small group but got hurt by warriors.”
“Why did you choose to come back with challenges?” “I will be greatly rewarded in eternity.” “Is there anything we should do to help you?” “I have to complete my journey as prescribed by God.” “Does it feel longer than you thought it would be?” “Yes. The journey is unfathomably longer than expected.” Because I’m his mom, I had to ask him again, “What should we do to help you on the journey?” “You just have to love me and that is your job. The rest is my job to do.” As you know Karen, I wrote a book, You Just Have to Love Me, based on that conversation.
That was where I saw my son telling me through his guidance to stay in my lane. My job was not to fix him. He didn’t say, “Your job is to fix me, cure me, heal me, make me different, or find the miracle worker who will do all that.” I remember my feeling at that moment, it was a huge relief. I remember the thought, “I can do that. I can’t do anything else. I can control anything else. I failed at fixing. I failed at all of it. I can do that.” That was the turning point in my heart to let go of that and shift into the unconditional love and acceptance of what was in front of me. I realized I can only change myself. My job to do is my life. It’s not to live for my son.
You were on a desperate search to try and fix. That must have affected your family. You had an older child, too.
I have two sons. My older son is an amazing man and he had a hard time as the sibling of a high-need kid.
That’s a beautiful story and we have a lot of questions to talk about with that and all the wonderful initiatives and things that you’re doing to help other moms who are going through different challenges that they may have helping with their autistic children or children on the spectrum.
What I’ve come to see is that while my son’s wisdom is through the autism portal, as far as my experience with him. His message while it is the first circle is the autism community of let go of fixing, but it’s for everyone who thinks it’s their job to fix another person. It’s a broader message.
Like when I started trying to fix everything that was happening wrong to my day, it’s in a different level of what you do but it goes in everyone’s mind. We all want to get control. We can only control certain things and we can only control our responses and our reactions. Debbie is joining us with her son. Debbie, can you tell us about your Ethan?Parents have a spiritual umbilical cord to their kids. Click To Tweet
My son has two older brothers and he has Angelman syndrome, which is a rare syndrome. I don’t think there are more than 2,000 or 3,000 cases in the United States that we are aware of. He was incorrectly diagnosed as autistic by an autism specialist. I knew that he wasn’t autistic because he communicates. He can’t speak well but he makes eye contact. What we did discover is that Angelman syndrome is on the autism spectrum. We did try that assisted typing communication and we also had an interesting experience. Has your son typed after that?
The challenge with that is that a lot of it is emotional support and not just technical physical support. He refused to type with me, so we lost that continuity. We’ve been bringing that teacher up to his school outside of Boston with us when we visit once or twice a year to let him type whatever he wants to tell us at that point. There are practitioners in that area but there’s no way for me to get them to build a relationship of trust for him to do it because I’m not there. It is delicate. If it’s not done well with the right person, it can be a disaster. It’s important to put safeguards in place with someone who knows what they’re doing. It sounds like you’ve had a tough experience.
We had the original experience and then they tried to teach me how to do it. The same with me, it didn’t work. I couldn’t be the facilitator.
Sometimes, the parent can’t be.
Debbie, what was his message?
I knew you were going to ask me that and I don’t remember but it was also a complicated answer that my husband and I just started crying. I practically dropped to the floor. Like your son, we had never heard any sophisticated communication from him. That was an emotional experience.
Thank you for sharing that, Debbie.
It sounds hard and personal. I’d like to refer you to the person who I trust to honor your experience and potentially talk to you. It might be worth a conversation with her. I want to offer that if you wanted to talk about that.
Thank you for sharing that. It’s important to support each other. With that, I’d like to bring on our featured goddesses who greatly supported me and they always continue to support this community. There’s Alyssa, Rachel, and Dena. Alyssa would like to start with a question for you, Heidi. Debbie, jump in if you have a question. Go ahead, Alyssa.
I wanted to start with more of a comment than a question. Heidi, I find the communication from your son so fascinating because it’s spiritual. First of all, for an eleven-year-old, I find it amazing. It focused on past lives and future lives. We talk about a lot of that on the show anyway but with adults. It seemed incredibly spiritual, religion, reincarnation. There are all these things that came up in it and you must have been completely floored by the content of the conversation.
I was. Certainly, it was the first God conversation. It was the first spiritual woah. We’re not ultra-religious so it’s not like he heard us talking about past lives or God or purpose. I’m like, “Where did this come from?” That did strike us. One thing that Lisa, the teacher, has shared with me is that’s not unusual of the autism population of typing and communicating vast awareness of all kinds of realms that they can’t physically describe or want to.
As my son has typed with me, you want me to talk more than I want to talk. That’s part of why he won’t type with me because I’m like, “Tell me. What do you want to say?” He’s like, “Back off, mom.” There are other things he had said before, Alyssa. There were other conversations. This was not like 0 to 100. There were other things that indicated, “Holy cow.” My son’s first week at this school that offered this, we had done an intake with them. We were still skeptical and suspicious because if you google facilitated communication, bash, crash, it’s a scam and all these terrible things.
I was going to ask you that. Were you skeptical?
I’m hugely skeptical and we were frightened. “Why are they offering this if it’s a scam? They’re deceiving parents. Is this where we want our kids to be?” We did an intake. In the intake, it’s like, “What’s your favorite flavor of ice cream?” In the beginning, it’s pairing to make it easy communication, so we talked about what was true and wasn’t true or just a bunch of words. She said, “What flavor do you like better? Chocolate or strawberry?” My son said the last thing that he heard, which was strawberry and I’m thinking to myself, “That’s not true.” I didn’t say anything, but I’m watching this. He then typed chocolate, which was true and it was spelled correctly. I’m like, “What? He said the truth and spelled correctly already.”
We’re still skeptical like, “I don’t know about this.” She called me after the first week. Those of us in the special needs world know when you get a phone call from school, you’re not happy. You’re like, “Who did he bite? Please don’t make me come get him.” You get scared. The teacher says, “I had to tell you about an exchange I had with your son.” I’m like, “An exchange?” I said to him, “You’re in school now for a week. Give me three words. How do you feel here?” She told me after which she only asked for three words because she didn’t want to overwhelm him. There was such a contrast between the old and the new school. The old school was an ABA focus school that ended up not being a fit, so it was small and quiet. The new school was big and bustling and all kinds of kids back and forth. She thought that he’s going to say, “Big, loud,” and stuff like that. The three words that my son typed, “Basking in joy.” I’m like, “What is happening here?” That was the first real glimpse.
I could tell you lots of stories but one more to indicate the path that the spiritual conversation, Alyssa, was not an otter shock. In this one other conversation, I go into Thai practice and she says, “What does your son like to do when he’s not in school?” Because we’re going to practice boring typing, which is what most of it was. I’m laughing because he was nine. I say that because you’re going to smile. What did he like to do? He liked to watch the news. No one wants to watch the news now but then, we used to like to watch the news. I said that to her, “He likes to watch the news.” We go on and we’re typing. She’s asking him, “What channel do you like? What newscaster do you like?” Stuff that she had no idea. He’s typing, “Channel four. Lester Holt.”
We’re on this path and she says, “Why do you like to watch the news? Mom says you like to watch the news. Why do you like it?” He types, “I’m interested in global things.” “Great.” She doesn’t have to be like, “Oh,” because that’s one of the hallmarks of these teachers. They have to be calm, neutral and accepting of anything that you say. “That’s great. Why are you interested in global things?” He types, “I’m interested in conflict.” Miss Neurotic pointing to me and gets all nervous, “Why is he interested in conflict? Is he a criminal? What’s that about?” You get a sense of why he won’t type with me.
The teacher doesn’t miss a beat. She says, “That’s interesting that you’re interested in conflict. Why are you interested in conflict?” He typed, “I have ideas for peace.” She’s calm as a cucumber, “Really? It’s very cool. Can you give us an example?” He types, “Let people make their own decisions. Don’t make them fight if they want peace.” I thought to myself, Lisa, the teacher, “She’s smart.” She didn’t type that. He typed that. Debbie, tell me if this is the case with your son. My son gets stuck on a lot of cartoon theme songs and wanting to play things over and over again. It’s almost a stim, a self-soothing thing.
From when he was two, there were some that he loved and he would get on YouTube and somehow conjure up in every language and every version. These cartoon theme songs and specifically Wonder Pets, Little Einsteins, SpongeBob, and others. It didn’t matter how old he was but from the beginning. After that conversation, I thought, “Why does he listen to that stuff all the time?” I looked up the lyrics of those and if you look at these lyrics of Wonder Pets. If you don’t know what Wonder Pets are, it’s for preschoolers. There’s a little duck, a little chick, a little penguin, and little baby animals. They work together and play together.
Every episode opens with, “The phone is ringing. There’s an animal in trouble. Come on, everyone. We have to help our friend. Let’s go. When we work together, we’re little but together we are the right stuff. Wonder Pets.” In every episode, they have to help their friend. For Little Einsteins, it’s, “Come aboard, it’s time to explore. Come on friends, let’s go in the spaceship, 5, 4, 3, 2, 1. Let’s go.” I’m like, “This kid wants to help his friends. He wants peace. He has ideas for peace. He was born with this.”One hundred percent of all the answers will be rooted in the most loving thing to do right now. Click To Tweet
Whether it’s real or not real of what happened, it made sense to you and it helped you to change your perspective. There are skeptics out there or believers, this was an exercise. This was something that you learned from and you got messages from it. It helped you to perhaps respond in a different way and maybe gain a little bit of control of how your responses are and what you could do to shift instead of focusing so much on fixing. Now, you’re doing so many other things to help others, which in turn helps you and helps your son.
There are skeptics. My response is, “You believe in God or you don’t believe in God.” Then the answer is, act as if.
The point of view telling your story is it’s important for people to understand that we all need to shift our perspective and whatever comfort we get from any type of service or anyone helping us will help us to move on a better path to take care of ourselves as well so we can take care of, of our children. If it’s okay, I’d like to open up to other questions, if any of our other featured goddesses would like to ask. Dena?
I have one and it’s still on this communication and the skepticism that’s there. I’m naive to this but to me, I don’t understand where’s the skepticism. To me, it sounds like a beautiful tool if you’re not verbal. Onward to the message you received from your son, it sounds like you’ve got an opportunity to get to know who your son was, what his passions were, and how we came to the world. Aside from the spiritual thing, I’m sitting here, taking these deep breaths, thinking, “Where is this a bad thing?” If you could share a little bit, and Debbie your experience wasn’t great and I’m sorry to about that but I’m struggling with understanding.
The skepticism is in the assertion that it’s not the kid typing. That the message is being influenced. It’s the therapist or the teacher who is imparting a message or influencing the message because there’s a light touch involved and it takes different forms with different kids. A touch can be considered conditioning or influencing the communication, and it’s not the person as the author. That would be a dangerous situation to have it be that, “My kid said this.” No, he didn’t. There have been situations, court cases where an autistic nonverbal girl has accused people of sexual abuse. It’s like, “You’re going to believe her?” There’s reasonable doubt. Should you convict someone based on something that you are suspicious of? Did she type that or not?
When you have doubt, how horrible it would be to say, “He wants this. She wants that,” when they don’t. There’s a need for caution. If skepticism is used as the tool to discern truth from non-truth, then it’s valuable and nothing should be assumed hook, line, and sinker. The answer to me is not to get rid of it. The answer to me is built-in safeguards as much as you can and there are ways to do that to protect the person that you need to protect. There’s a reason behind the skepticism and it’s a healthy reason. It’s about addressing it though appropriately so you don’t throw the baby out with the bathwater to say, “No one should ever do facilitated communication because there is the potential for influence and abuse.” It’s missing the boat for me.
It’s the message that you heard. Regardless of where it came from, it was a beautiful message. For so many years, you were a Marketing Director. You had a successful career. You married in your 40s and you had your first son.
It was a plot change. Every script I had in my head for what the future would hold changed drastically.
You became the autism mom that you mentioned. From there, you had to become a different form of autism, not staying on that path of trying to fix, but accepting it and loving him, as a message that he gave you, which opened up to so many new things that you could do like starting Moms Spectrum Oasis.
I had a choice. Is all of this stuff going to crush me and leave me a puddle on the floor? Yes, it did for a long time. I was in a lot of pain and I was “Fix, fix, and fix,” and I was obsessed with that. Until my own healing and realizing that with all these plot changes to the script, being angry at God wasn’t getting me anywhere. If I chose to say, “Is this an opportunity to expand to work with the plot change instead of resisting it at every move which was useless anyway.” It’s like saying, “I hate that the sky is blue. I’m going to be miserable,” because it is. My son’s message is accept and it frees me up. I can then say, “I’m going to move out of a crisis and say, ‘I’m choosing to move out of crisis mode and into living my life mode. Also, picking joy and expansion every day, as opposed to the alternative.’” Ultimately, that is the only thing I can control as you said before.
You want it to be a resource to people that you didn’t have. Whenever they need it, you’re there for them and you offer all of these amazing offerings on Facebook. You have courses and different things that you do to help self-care for the mom. All moms need to take care of themselves. The oxygen first. You have to do that in order to be able to take care of others especially with a child with special needs. Many times, we neglect that. Rachel, do you have something you’d like to ask?
Heidi, I love your story and I love your journey. I love how you always ask the right questions. What I’m impressed with is you found this method to communicate with your son but you also were meant to be together to be able to draw that information out of him. You seem to always have had the presence of mind. That’s another beautiful part of the story. You enable the story, you’ve written the book, and you’re sharing the knowledge. I have a question. First of all, did you know about past lives? Did you believe in past lives? What was your exposure to that concept when your son wrote that?
I had read Brian Weiss. I knew about past lives. I hadn’t thought much about it. I certainly hadn’t thought of it in terms of me, my family, and my life. It was like, “That’s interesting. Next.” I never thought of it in terms of me or anyone in my family. I have to say I was shocked to hear my son type about this. He certainly had not heard that at home. I couldn’t imagine where he had read it, heard it or think about whatever to type about. Thank you for that acknowledgment, Rachel. I will say that is part of my message. All of us have that.
When my son said, “God is in my heart, and he will always protect me,” it wasn’t only about him. Each one of us has God and in our hearts, who will protect us if we listen. If we stop, get quiet, and feel. We all know. Each of us is the expert on our kid. We know what they need. Often the brain is, “What about this? What about that? That one says and that expert is.” How many times has it happened where someone said you should do A, B, C and your gut goes, “I don’t think so. They don’t know my kid. Maybe that’s brilliant for everyone else but that’s not for my kid?” We all have that.
I think I should trust my son’s guidance because you come from love, not fear, and that’s ultimately the choice, there are no mistakes. There’s only learning, “That doesn’t work? Okay. It doesn’t work, what else?” “Maybe not now or maybe not as much or too little.” You’re coming from love. It’s okay. Whatever you do, is right. It’s not about or wrong. What is the guidance? That is spiritual guidance. Thank you for the acknowledgment that I was present with him. You are too with your kid.
It’s the knowing in the moment of what is needed now. It begins with self-love. The wisdom is, love thy neighbor as thyself. It begins with us. We are doubting our worthiness and our enoughness. We forget that we are each made in God’s image. We each have God in our hearts. Do we remember how powerful we are in our own lives and in our kids’ lives? Our kids feel it. Just as we know our gut, they know that mom’s okay, upset, or whatever. I talked about this in the book. We have the spiritual umbilical cord.
Even if we didn’t physically give birth, there’s that connection and that knowing. Don’t lie. Be authentic, feel what you’re feeling and it’s okay. You’re human. If you’re angry, and you want to kill that kid, don’t do it. You can feel it and you can say, “You are driving me nuts and I’m putting myself in a timeout because you’re making me crazy right now.” They know that’s true. They know that’s true and they know mom is speaking the truth. Therefore, they are safe because you’re not, “I’m fine,” and you’re not.
Not to put you on the spot, Debbie, but can you relate to what Heidi is saying?
I love everything that Heidi is saying and I can totally relate. I also wanted to add one thing and maybe it is in your book already but in Judaism special needs people are a higher source and they are revered and treated like a special and higher source. That’s a beautiful thing. I don’t see that in other religions or and that’s the message, too. If you trust it and you see who they are, you realize all the things that you learn from them are the things that you would never learn from anybody else.
What are some things that you’ve both learned? I know Debbie, you’ve talked about being present to me. Can you both share some things that you’ve learned from your sons? Debbie, you can go first. You’ve talked to me a lot about him being present, he’s happy, he brings joy and he doesn’t know that COVID is around and that everyone is struggling. He even had COVID, right?
He did not.
I’m sorry. I thought he did.
You reminded me that we have talked about this and he sees the world through rose-colored glasses. He doesn’t know that there’s hatred in the world, there’s war, there’s judgment, or people judging him. He has an inner sense that we don’t have that he can find those amazing, beautiful people in this world. He finds them for me and I get to have them after and know them after. I’ve got the goosebumps because he has an inner sense of who’s a beautiful, loving and caring person in this world.
He gravitates. I know that with my family, he gravitated to my younger daughter right away. Not that she’s more loving than any of my other children but she does have a special caring soul. When they were little, he hugged her right away. What do you mean? People that he will gravitate.
When I go out every day with him, I get to meet these incredible people who gravitate towards him and he gravitates towards them. This happened and it happens often but this particular person, I’m so blessed that we met her. She met my son. I was trying to get a vaccine for him because I haven’t been able to send him to school and that’s been a real stress on me, our lives, and our marriage. I went to a vaccination center, where we’re not signed up.
I pushed my way through the COVID police into the parking lot. Several people came out to the car to try to say, “I’m sorry but you have to leave.” The third person that came out to try to get us to leave the parking lot was this woman. She’s a nurse. I opened the window, my son was in the backseat and he looked at her and he said, “I love you.” She looked at me and she said, “My father was a special needs teacher my whole life. I have a soft spot for special people. I’m going to do my best to get him vaccinated.” That’s not even the end of the story.
It turns out that she is a children’s book author and she writes beautiful books. One of them is called, I See. They’re all different, I Am, I See, I Love. I’m not sure all of them but one was about mirrors and what you see in the mirror and what other people see in the mirror. It’s a children’s book, but it’s so beautifully done. She and I now have a relationship that we’re going to carry forward forever. I adore her and I’m so grateful to have her in our lives.View a plot change as an opportunity to expand. Click To Tweet
Thank you for sharing that. That’s beautiful. Rachel, you’re getting emotional. Do you want to share?
It’s such a beautiful story. My husband’s older brother has special needs and he now lives in a community, Camphill Soltane, outside of Philadelphia. He has trouble communicating but he does do a version of sign language. If you know him, you can understand the sounds and the signs. I can see that moment with you and I envisioned that I was that nurse and if I were that nurse I would be like, “I am doing whatever I can.” It spoke to me.
I was going to add one thing because my husband is the brother. He grew up that way and his older brother lived in their house for twelve years. What was upsetting is that he had to do everything independently. There were no schools for him to go to so she would get someone who could teach him karate for balance or she could find one person, but he didn’t have a community. Every time she visited places, it was so upsetting for her until she found this place, Camphill, which is based off of the Waldorf Philosophy.
My husband’s brother is still in this community but it’s interesting for the siblings. I’ve noticed that my husband, while he has infinite patience for his brother, others, he seems to have less patience because we’re all capable, and you should be able to do this. It’s funny how he’s evolved. There’s the other side of the sibling that I feel that it has made him such a caring person. As an adult, we do so much for his brother’s community. He’s an incredibly sensitive and loyal person. He’s always looking out for the underdog always.
Heidi, can you relate? On the two levels of your son, Eric, as well as what has Ethan taught you?
Rachel, I love hearing that story of adult siblings and the positive impact because I was always aware of the heart-wrenching isolation and hurt of a younger kid dealing with this and the bullying. If you’re not my friend, I’m going to tell everyone about your weird brother kind of thing so it was hard for him. He’s this incredibly compassionate, wise, young man who is always looking. He was called out for an unexpected act of kindness at his high school. He was caught doing something good and didn’t even know. Someone had dropped their books in the middle of cafeteria madness and he stopped to help this kid. No one else was and everyone’s flying by and he was helping this guy. A teacher saw it and nominated him for this thing and I was like, “I love that and that’s him and I pray that the experience has helped him as well as caused him pain.”
What you were saying Debbie, I was a glow in your story. Your son and my son are clearly connected by more than a name. Although it’s a great name. It means foundation and enduring. The name Eitan in Hebrew is like a rock, the foundation. I’m grateful. We didn’t know he had autism when we gave him that name and I’m grateful we gave it to him because I hope it will support him as his foundation. I felt in your story and if everyone leaves with one thought it is the power of love.
It is the power of choosing love. This is not corny and only for a kid story. Every day, the infinite power of choosing love and that’s what our kids are teaching us especially special needs kids. Debbie, what you said about Judaism honoring special needs people. I do quote, in the book, I have a lot of quotes from different people, I have the Lubavitcher Rebbe saying, “People with autism don’t want to be bothered. They can’t be busy with people because they’re busy with God.”
The Rebbe knew and it was because of him you’re in Chicago. I don’t know if you’ve heard of Friendship Circle. The Friendship Circle is sponsored by Chabad, created by the Rebbe because it’s all about special needs people as higher souls and they are here to guide us. In my prior life, I was an English and Comparative Literature major. When you study literature, one of the first things you learn whether it’s the English language, or world literature, when you want to know who speaks the truth, first of all, in any literature, who’s the narrator? Who’s talking? Whose voice is that? Am I believing it? Is it true? Who’s talking? Who is that? That’s number one.
Number two, when you want to know the truth, you ask the fool or the child. People who are outside every day, hustle, bustle power structure, zero-sum transactional stuff, who speaks the truth? Often, the person who has no ax to grind and no agenda sees. If you speak with Lisa and she tells you what all the kids are typing, it can all be summed up to we’re here to love each other. Love is all that matters. Love is all there is. When you’re confused, “I don’t know what to do. The future? The past? This one. That one? What do I do right now?” You take a breath and breathe. You go within the wisdom that lives there.
100% of the time, the answer will be rooted in what is the more loving thing to do right now? That is your answer. Including buying a car, including what breakfast cereal to buy, including during COVID, “He’s not meeting the goal and he’s not following the homework assignment and he’s not following this schedule.” What would love say right now? What will bring more peace right now? Maybe we want to listen to music together and forget the agenda. All of us, it’s in our DNA. We’re programmed when we listen to it, to listen to that loving place. Our kids demonstrate that for us. They are our mirrors and our guides to see this opportunity every day.
We talk on the show like Glinda the Good Witch in The Wizard of Oz, “You have the power in you all along. You just have to find it. It’s there.” With all the episodes, we talk about tapping into that inner goddess and tapping into the power and love that’s there. Thank you so much for sharing all of these amazing messages of hope, power, love, and surrender. I’m getting so much out of this conversation about making choices and taking care of yourself. I would like to touch on before we end about your initiatives and what you’re doing to help other women. Can you share a little bit about that and what your future plans are, and we’d love to know how your son is doing?
I’ve created Moms Spectrum Oasis as the umbrella to hold up and be the foundation for all the various initiatives underway. Whether it’s groups that I’ve been forming autism-specific but also expanding out realizing that my son’s messages are for humanity not only for the autism world and to have both populations cared for. If people go to my website, it’s being still worked on but if you go to HeidiRome.com/grateful, you can sign up and I can certainly keep you posted as I continue to hold monthly gatherings similar to this.
It’s where people get to talk about whatever is coming up for them and to talk about real-world practical guidance. It’s a place to be seen and heard and held if you need support in any way. Part of the beauty of this is that it’s the cycle of giving and receiving. Wherever you are, in any moment, one second you’re giving, and the next you’re receiving. It’s complete replenishment because that is the natural order and the natural law.
Especially when moms and women come together, it’s empowering and beautiful. In terms of staying attuned to the things I’m doing, the easiest thing to do to reach out to me would be to go to HeidiRome.com and find out more about the things that might be appropriate and interesting to each person individually. To answer you, Karen, my son is thriving. He’s in a place after a lot of struggle and that’s a whole other story. It’s a lot of, “What’s the right place for him? He’s not learning, he’s upset, he’s in distress, and he’s melting down and five times a day in an emergency room. Should we call the police?” It was hard and now his needs are met and he’s in a place of thriving.
The name of the book is You Just Have to Love Me. In there, I realized that the pivotal moment for me was not about, “Am I a good mother making decisions? If I fixed them, I’m a good mother.” Once I said, “Coming from love. What does he need? What is his experience? What does he experience that he needs in his everyday life?” That changed everything and made life better for him and for me. Miraculously and magically, we found the right solution for him at that time. We moved from being a dark horse at the back of the stage, he came forefront. “Here it is. Here’s what he needs right now.” That’s the magic that happens when we shift into that love thinking and what that person needs. He is thriving and I am meeting my needs. Part of that has been to create this place to be with these wonderful, amazing holy women doing noble work. It’s so nourishing. It nourishes my soul to be with you.
Debbie, go ahead.
This is probably something that Heidi I should speak to you alone about. This is something that haunts me every day. What happens when I’m not here anymore?
I get you and I’m going to cry.
It’s the same answer, Debbie. What would love do right now? Therefore, I have started to look to create what he will need, what exists, what resources are out there. I’ve started to put in place the creation of something new that may not exist. The umbrella of Moms Spectrum Oasis will cover, for the sake of a working term, what I am calling Ethan’s Village. It has to start somewhere and it has begun. Let there be light. We are creating where he can live for the rest of his life to thrive, be happy, be protected, supported, and have his needs met. We can absolutely talk online. You are not alone. All special needs moms share that deep worry, deep commitment, and certainty that it will be okay because we will make it okay. Let’s talk about it.
Debbie, I know that we’ve talked about that, too. You and your husband have talked about something as well, a place that can support this and have a safe place for your children as adults, as they get older to go to and keep them safe and continue living the way that they can live. To be protected and supported. Thank you for being vulnerable to sharing your stories. For both Heidi and Debbie, I’m glad that I connected with you, too.
Thank you, Debbie.
Debbie, I hope it was okay. It was last minute but I was like, “You have to come.” I had this gut feeling. I know it changed the interview in a sense but it’s so important. It shows and demonstrates my mission of what I want to do in supporting women. It helps me feel that I’m on the right track because I love I always feel in a past life I’ve been a Jewish matchmaker because I like to connect. I hope you too will continue your connection. I have a feeling you will and you’re going to make some great things. The two of you making an Ethan’s Village might be out there.Love is the tool to empower ourselves. Click To Tweet
Rachel, thank you as well for being vulnerable with your story and sharing your outlook on your husband on how he is now and how he’s learned with his brother. Also, sharing the love. Back to George Benson’s The Greatest Love of All, “I believe that children are our future. Give them love and help them lead the way.” If we can do that for each other, for our children, and for ourselves, that’s the greatest gift. Thank you so much for joining us on the show.
This was amazing. I also want to thank the women who are not necessarily in the special needs world are our sisters on this journey. I want to let them know how needed they are and how appreciated they are like that nurse. Each of you in this arena today was like that special woman who showed up when asked when brought in and you said, “I’m here for you. I don’t know what I’m going to do but what do you need?” That is living love and empowerment for your sisters. It’s also the giving and that is what is going to shift our world and create. It’s you, that nurse and there’s my buddy. My other Ethan, I love you. I want to acknowledge everyone on the show.
Can I say something?
That message of the women here. You can’t even imagine how powerful you guys are for us in our lives. I want to thank you.
I love you, Debbie. I’m hoping this will inspire. We live life and we have things that we’ve gone through. Why not share it? I know this is going to sound so crazy or silly but one of the guests asked a woman, “Where did you get that sweater. It’s so pretty.” The woman’s like, “I don’t remember.” We don’t want women that say, “I got it at this store. It cost this much and this is how you can get it, too.” It’s not about being better than or jealous. We want to support. I know that’s such a silly example but it rings true. We want to help each other in any way that we can and I love that message out to people who are not dealing with a special needs child but they can provide that love and guidance and support by a simple, “I hear you and I’m here to help you.”
This goes back to the beginning of this message. Viewing a plot change, a life plot change, as a transforming opportunity as an option to be expanded is Ethan’s message. It’s for all of us. Who here has not had a life change, a job you didn’t get, the friend who disappeared, the divorce, or whatever? How many crazy things have happened? “That’s horrible, things are different or the world has changed.” We all as human beings have experienced the script not going according to plan. There’s a Jewish Yiddish expression, “Man plans and God laughs.” We can plan and it’s not going to go like that. As humans, the message is for all human beings to instead of being a victim of the situation, how do we empower ourselves and know that love is that tool to empower ourselves. The situation that we all might embark on or encounter every day.
Welcome, everyone to the Favorite Things portion of the show and we’re here with our amazing loving guest, Heidi Rome. We’re going to talk about things that bring us joy and happiness and make us feel good. We’ll start with Dena. Dena, did you bring something that smells yummy?
It’s not even about this episode but it’s brand new. I went to visit The Mart and we’re fortunate to be changing a few things in our home. We were in a showroom and this lovely gentleman that runs the showroom was talking through lots of things and fixtures. The long in the short is, I have some polished nickel in my bathroom that I cannot bring back to life. It’s like, “It is what it is. I’m not replacing it. It’s fine.” He said, “No. I have a product for you.” He sent me all the links to Amazon to get it. It’s called Flitz and it works. I’ve been polishing away small things that make you happy. My bathroom feels brand new and I’ve tried everything. This is my little gem of the day.
I’m freaking out about that because I cleaned my sink and it almost caused a divorce because I took off the beautiful shine of how it was and it’s awful. My husband came out and said, “What did you do?” I can’t get it back to normal. It’s interesting when we say normal whatever the new normal and get it back to how it originally shined.
I’ll send you his email to me because there’s also a wax layer, but naturally, it was polished up some silver. The bathroom fixtures were not being replaced. That wasn’t in the budget. That’s not what we were doing but now I feel like they’re brand new.
Thank you for sharing. Alyssa, how about you? What did you bring for show and tell?
I’m hoping I’m not hijacking Rachel’s but because we both have the same thing and I don’t know what she’s bringing. I am wearing a bracelet and Rachel has one, too. I found this company online. It’s called Ubuntu Life. We were talking about amazing women, noble work, empowering women, communities and this seemed to speak to me. It’s a beaded bracelet closed by pulling these things. They make them in all different colors and they all say love. They are made by Maasai women in Kenya. The company was started by two pastors. One in Austin and one in Kenya. How did they meet? I don’t know. The story is on the website but the profits go back to these women.
To my understanding, these are women whose children had grown and they wanted to be creative. They wanted to make money and they wanted to do good work and spread the artesian community that they were part of and their work to the world. There are a lot of initiatives under this company. If you go on the website, they have a variety of different products but their bracelets are cool. I love wearing it. I also love it. It’s red. We’ve been speaking of Judaism and I feel like I’ve got this red Bendel on my wrist when I go out into the world, but they make all beautiful colors. That’s my favorite thing for the day.
You got one for Rachel for her birthday.
Mine is not deep. It’s loving a different way. It’s lipstick.
We love good lipstick.
Dena always shows us good products. Everyone does that but for this episode, I’m doing a product. I always remember the name and at this moment, I’m blanking out on the name. I hope I can read it.
I’ll talk about mine. I used to fight against this ritual. I thought that something was wrong with me. I didn’t get it but now I embrace it. Heidi, it’s like your message. I surrender to it and now I love it. It’s my afternoon nap. I always napped when I was younger. My mom said she would take me to her canasta games or her council groups. She’d put me on a couch in someone’s house and I would fall asleep for a couple of hours. I was that third child that went everywhere but I would always nap.
As I got older, I would resist and I would be like, “No. I have to go, go, go. I cannot nap.” I decided to give into it. I love it. Around 3:00 or 4:00 I closed my eyes and twenty minutes later, I wake up like clockwork. I could be in the car when I fall asleep but I feel so refreshed and replenished. When I don’t get that nap, I’m irritable around 5:00 or 6:00. I love my nap. That’s something I highly advise people to do. I’ve done research on it and I found out that those quick power naps are good for your brain. The Millennials are all doing it so now I invoke because I’m getting that power nap in and it’s great. I highly recommend it. Rachel, what’s the lipstick called?
It’s called Black Orchid by Laura Mercier. I have not met someone that this color does not look good on them because it morphs into your skin coloring but for me, I feel it gives just kissed look but it doesn’t look like I have a lot of lipstick on.
Put it on, Rachel. It looks like it’s black.
It’s a deep purple. It’s more than a hint of color. It’s love in a whole other way.
I love the love. Debbie, did you bring something to share?
I have these books that I got from my nurse friend Katie Mullaly. First of all, they’re illustrated beautifully. The poetry is wonderful and the messages are what makes it the most powerful. It’s all about knowing who you are. This one is called the Land of I AM, which is the one about the mirrors. You guys can get it. She has a website and they are beautiful books. She’s coming out with a third one. I’m looking forward to that as well.
Is the first one called the Land of NOW?
Yes, and they’re children’s books. They have a message.
Children’s books are so powerful. Because I teach preschool, I’ve mentioned that I wish that adults would read children’s books more often. Heidi, what you mentioned in the show about children shows. They’ve good shows the good quality shows that have those underlying messages that we all need to hold on to as adults. Thank you, Debbie, for sharing that. Heidi, what did you bring?
You might laugh at me, but that’s okay.
No. There’s no judgment here.
I love baby Yoda. I think he is the cutest little thing. I did go a little bonkers and I bought a baby Yoda picture frame. It holds photos.
Baby Yoda is wise.
He’s wise and cute.
It’s apropos for this conversation because baby Yoda is a wise creature that’s in the shell of a baby. Upon looking you would think he doesn’t know what he knows and he knows so much. I hope I’m saying to your children. Upon first glance, you might say, “That person doesn’t know anything. They can’t. Forget it,” but they are so wise and so gifted. That’s a great message.
It’s the people we often dismiss or say the thing we need to be listening to.
I’ve learned so much on Grateful Goddesses even in our favorite things. I’ll try them all out. I’ll order those books, that lipstick and I love the bracelet. Dena, for sure I’m going to polish up to save my marriage. He’s over it. He’s gotten past that. Thank you again. Blessings to everybody for joining us.
- Moms Spectrum Oasis, LLC
- You Just Have to Love Me: Mothering Instructions From My Autistic Child
- Facebook – Moms Spectrum Oasis
- Camphill Soltane
- Friendship Circle
- You Just Have to Love Me
- Ubuntu Life
- Land of I AM
- Land of NOW
About Heidi Rome
Heidi Rome is an autism mom mentor and the founder of Moms Spectrum Oasis LLC. In May 2020, she launched her book, You Just Have to Love Me: Mothering Instructions from My Autistic Child, which hit #1 New Release bestseller status in the Parenting Children with Disabilities, Disability Parenting, and Special Needs categories on Amazon during the pre-order period. Heidi has been featured in the Huffington Post, Princeton Community Television, West Essex Tribune, AM970 The Answer and iHeart Radio, 24/Seven Magazine and NJ Kids on the Go/Special Needs Guide, and other media.
Whether speaking, consulting privately, teaching courses, leading groups, holding retreats, facilitating circles, or leading staff/employee autism motivational training, Heidi’s key message of “Take a Breath and Breathe” is for struggling moms who are so focused on being a “good parent” and doing their best for their special child that they neglect their own self-care–a decision with severe consequences for each member of the family. Heidi shows overwhelmed parents how to choose a happier, more empowering path toward the family’s wellbeing.
“The most important thing you can provide for your child is a calm parent with a healthy, balanced perspective. Rested, nourished, and ready to face the countless decisions on how to best raise your differently-wired child. To get to that place of peace and balance, you’re going to need community around you: Like-minded parents with similar journeys and perspectives who care about you, want to support you, and can guide and encourage you as you go.”
~ Heidi Rome, speaker, Autism Mom Mentor, founder of Moms Spectrum Oasis, and author of best-selling book, You Just Have to Love Me.
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